My Child, My Gift
My Child, My Gift: A Positive Response to Serious Prenatal Diagnosis (Complete Book)
Because the Confraternity of Penitents has a commitment to uphold the value of human life, no matter how compromised, and to assist women in crisis pregnancy situations, we include the full text of this book below the Testimonial section. The book is available for $4.95 in print form, with photographs, exclusively through the CFP Holy Angels Gift Shop on this link. Bulk prices are available upon request.
We recommend that penitents obtain a copy of this book and give it to their priest, deacon, bishop, problem pregnancy center, ob-gyn, and others who will be seeing women experiencing a poor prenatal diagnosis. With so much pressure to terminate pregnancies where the baby is diagnosed with a disability or fatal condition, it is imperative that this book reach the parents before a termination appointment is made.
I have a very special hero. My hero is my little brother. His name is Joe. My little brother passed away when he was five days old. Joe is my hero because he showed me that not everyone is here forever. When he died, it also showed me that I am a very lucky person because not everyone has a little brother in heaven that always watches over you. The five days I spent with him were the best five days of my life. We thought he was only going to be here over night, but we were wrong. We had a lot of fun with him. I fed him, got him dressed, and gave him a bath. The night he was born, I could not sleep. Then the next day we had to let my mom rest so I took care of Joe. Then a couple of days passed and my principal told me that we had to go to the hospital because something happened. I got there and Joe had passed away. When I heard the news, I felt like I was empty inside and very lonely, but for some reason, I kind of knew that he would always be with me. That's who my hero is.(Alexandria M. Hassell, Joe's sister. Joe was diagnosed in utero with anencephaly.)
Joseph, Alexandria's brother,diagnosed in utero with anencephaly
My Child, My Gift is an important resource for parents who, prior to the birth of their child, receive the news that their child has been diagnosed with a serious illness or disability. Understandably, this can be a time of many questions and uncertainties for parents. For clergy, religious and counselors seeking to provide pastoral care and guidance, this book will be a great help in upholding the dignity of each and every life, and the truth that every child is a gift from God.
Seán Cardinal O'Malley, OFM Cap., Archbishop of Boston
If Ob's and geneticists would pass this book along to parents upon diagnosis, perhaps fewer would feel that they are expected to terminate. And even better, if the diagnosing professionals, themselves, would actually read, "My Child, My Gift", perhaps they would begin to understand what a disservice it is - to natural maternal love, life itself, and hope - to persistently recommend termination. We have a chance here to really make a difference in the lives of countless families by ensuring that newly diagnosed families have an opportunity to read this book. Thank you Madeline, for this wonderful contribution to the Culture of Life!
Monica Rafie, founder of BeNotAfraid.net and mom of a child prenatally diagnosed with life-threatening, complex heart defects.
“Where is the instruction manual to motherhood?” Finally you hold it in your hands. What began as a booklet to encourage pregnant women who have been told disconcerting news that their child may have a fatal, threatening or disabling diagnosis, has at long last been assembled in book form. This volume is a must read for each parent, grandparent and friend. Madeline Pecora Nugent has answered every question asked regarding the pains and joys of motherhood. She also addresses queries that most of us never thought to ask, but need to know the answer to in order to be capable to comfort a loved one, a spouse or even to console yourself when you beseech to know the truth; if you’ve done or are doing the right thing regarding conceiving, carrying, and nurturing your child. Madeline’s words are written to mothers who crave honest counsel and anticipate earnest guidance.
To call this book “Every mother’s Bible” would sound irreverent. But sincerely this is undoubtedly the most profound and complete guide to understanding what love means at the heart of becoming a mother. I challenge you to find a more poignant compilation of genuine personalities that capture the spirit of a mother’s unconditional love recorded on a single page. This treasure piece is essential to occupy every woman’s library. Congratulations Madeline and thank you for stirring my heart and confirming that what I do as a mother is as it should be.
Terri Green, Author of Simple Acts of Kindness and mother of 22 year old Kara who lives with severe Cerebral Palsy.
After reading the first few pages of your book, I immediately knew that this book was written for people like my husband and me. It has been such a blessing to have this book minister the beauty of all God's children. . . . Thank you from the bottom of my heart for ministering to me and for your prayers. I will keep you up to date on my baby's precious life. God bless you.
I think parents need to research the after-effects of termination. There is little statistical evidence on long term effects, but what little can be found is pretty compelling. The key in this whole thing has been to listen to my heart, and that is something doctors do not take kindly to anymore. Intuition and inspiration are not scientifically quantifiable, so people are reluctant to trust them. Parents need to trust their own judgment even if it conflicts with medical advice. To do not just what sounds logical, but what feels most peaceful. I wish there were easy solutions, but there are not. Even when there is just one marker of a potential genetic disorder, doctors are SO negative, and so ready to offer termination as a means to make sure there is no problem! What an illusion that is! Not only are they compounding a problem with another, but there ARE no guarantees. Birth accidents cause cerebral palsy, babies develop respiratory distress, premature labor occurs, disease goes undetected. The only security in life is to take things as they come, and handle them as best you can. At least then you have a clear conscience and can go forward without added burdens. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
Sidney Faith, born with a lethal form of dwarfism, lived 18 minutes of love in her parents' arms
While we were at the doctor's office, they gave us some literature. There weren't any testimonies about keeping the baby or having the baby and placing her in a home or up for adoption. The only option seemed to be abortion. I think if there were some stories that gave some kind of hope it would be possible to choose something other than abortion. My children know they have a sister in heaven, but they do not know how she died. It is very difficult to discuss Josephine (that's her name) with them. One reason is that I hate having to lie to them and I know that one day I will share the truth with them. Too many people know the truth, so one day they will also know the truth. One of the saddest things about this is that if Josephine died naturally, I would be able to share her with my other children. (We have 5 other children). My greatest wish is for others to listen to stories like these. I try to tell some of my family and friends how much I regret the abortion when I get the chance to talk about it. (Francesca, mom of Josephine who was diagnosed with multiple disabilities and who died by saline injection to the heart prior to "pregnancy induction" at thirty- six weeks gestation)
Upon my baby's diagnosis I was given a booklet that was not very helpful at all. The overwhelming majority of the cases in the book decided to terminate their pregnancies. There were only a couple of stories of carrying to term, so that in itself said a lot. I definitely could have used a book with LOTS more stories of people who chose to carry their babies despite a bad diagnosis, and their reasons why and how they found the strength. (Jewell, mom of Joyann who was born with anencephaly)
I have read My Child, My Gift also, and found it extremely helpful, it was the first time I got a sense that there would be some joy in our baby's birth, despite everything, and that was true in the end. (Posted to an Anencephaly Support On-Line Board by a mom whose baby was diagnosed in utero with anencephaly)
Arianna, born with anencephaly, lived four days of love with her parents and all her family. Many healings were wrought in the family because of Arianna's birth.
I think parents need to research the after-effects of termination. There is little statistical evidence on long term effects, but what little can be found is pretty compelling. The key in this whole thing has been to listen to my heart, and that is something doctors do not take kindly to anymore. Intuition and inspiration are not scientifically quantifiable, so people are reluctant to trust them. Parents need to trust their own judgment even if it conflicts with medical advice. To do not just what sounds logical, but what feels most peaceful. I wish there were easy solutions, but there are not. Even when there is just one marker of a potential genetic disorder, doctors are SO negative, and so ready to offer termination as a means to make sure there is no problem! What an illusion that is! Not only are they compounding a problem with another, but there ARE no guarantees. Birth accidents cause cerebral palsy, babies develop respiratory distress, premature labor occurs, disease goes undetected. The only security in life is to take things as they come, and handle them as best you can. At least then you have a clear conscience and can go forward without added burdens. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
The timing of your book couldn't be better. As of right now, women/couples are not given the available options when they receive the horrible news about their unborn baby. As was the case with me, I was told I "must terminate." My doctor was extremely difficult the entire time. In retrospect, I realize that I took him down a road that he would rather not have traveled down, due to his own personal biases (and I'm sure also his fear of malpractice, etc). With all the sophisticated prenatal testing available, women need and are entitled to hear ALL of their options, not only the termination option. And if they choose to continue the pregnancy, they should be given the appropriate referrals for support. (Donna, mom of Jonathan who was born with Potter's Syndrome)
For most of us, confronting the unknown and facing those things over which we have no control makes us fearful. But courage is not facing obstacles without fear – it is facing obstacles DESPITE our fears. Knowing we did everything possible for our child regardless of the outcome can give us a great sense of peace and relieve us of the “what ifs” that could haunt us in the future. We can realize strength within us that we never knew existed. (Debbie, mom of Braedon who was born with hypoplastic left heart syndrome)
"God's gifts are never what we expect. The trick is not to be fooled by the wrapping paper, but to open the gift."
-- Paul and Nancy Cullivan
Down Syndrome and Spina Bifida
Thank you so much for this book.
When my son was a newborn, I met a young counselor at a pregnancy aid office who treated me like the new mother I was when his older sister was born. He was very small, being born a month early, and he has Down syndrome. I don't remember what brought me to her office, only that I seemed to fall back into the mainstream world when we were talking. I think if we had not met, I would not have realized so early that my son's diagnosis had thrown me into some kind of out of sync subculture as his mom.
As I was preparing to leave the office, I thanked her for being so natural and authentic, or whatever set her apart from everyone else I had met. She told me that she was born with Spina Bifida, and had been diagnosed only a few years earlier. She was mildly affected and that delayed her diagnosis, although the condition caused challenges that were significant enough that she was relieved they could be explained when she found out.
She said that not being diagnosed at birth caused her to have many opportunities that she would have missed otherwise, and that she was also aware that if a prenatal test had been available she would most likely not have been born at all. She said that gave her a very different perspective on babies with disabilities and prenatal testing. It seems to me as though something far beyond that made her the person I found that day, but of course we will never know.
Seeing the web page about My Child, My Gift, reminded me of that life changing meeting. Thanks again for your book.
Pam Wilson, Seattle, WA
Jonny (upper left) was diagnosed in utero with Down Syndrome. After he was born, his family found him so delightful that they adopted three other boys, all with Down Syndrome, pictured here with their older sister Maddie.
Defects incompatible with life in kidneys, heart, and bladder
My baby was born still on Easter Sunday 2007. Some of his organs didn't develop properly, and he couldn't have lived outside the womb. He died some time shortly before birth. The autopsy showed that his kidneys, bladder and heart didn't develop properly. They don't know why this birth defect sometimes happens. The doctors were amazed he lived all the way to full term (42 weeks). If a baby lives past birth with this, they usually die within the first day or so. I'm so thankful he died with me and not in a NICU!
We are so grateful for the time we had with him. Pregnancy is a special time that God has given to parents - especially mothers. We get to know our child with increasing intimacy as we spend more time with them. God in His Love for each one of us has given us parents to be examples of His parental Love for us. Seek this Love from God and you will know how to care for your child. We have lost our child, but God has given us special knowledge that our son is with Him in heaven and that He has a special intimate relationship with our son in heaven. We know that Jesus touched our child while still in the womb to show our Thomas who He was and how Thomas could love Jesus. Ask Jesus to touch your child. Ask Jesus to heal your child if it is His will. Jesus Loves your child just the way he is.
Please consider that the doctors are not always correct in their diagnosis. Many parents who choose life are surprised to find the diagnosis incorrect.
Sadly some abort their children when they learn their baby has a condition not compatible with life. I just don't understand why. I'm so glad for the time we were give with him from Jesus (Keith and I seriously suspect Our Lord gave us a little extra). He lived out his life as Jesus wished. I pray all parents would give their children the same chance. How can we know what Jesus does with these children in the womb? Their lives, however short, have a purpose according to God's plan, too. If we had known beforehand that Thomas had this condition, we still would have let him live for as long as God willed.
So thank you for all of your prayers!
Holly Bodoh, Milwaukee, WI
Many defects incompatible with life
BABY ALEXANDER ROBERT WAS BORN APRIL 18TH-AFTER AN EASY DELIVERY -5 LBS, 13OZ. HE PASSED INTO THE ARMS OF OUR LORD,3 DAYS LATER SURROUNDED BY HIS LOVING FAMILY.
HE HAD MANY DEFECTS-BLINDNESS, DEAFNESS, BRAIN DEFORMITY, AND A HEART DEFECT, TO NAME A FEW.
PRAYERS WERE ANSWERED HOWEVER, IN THAT THE BABY GOT TO GO HOME IN HOSPICE CARE AND HIS PARENTS AND GRANDPARENTS WERE THERE AND GOT TO LOVE HIM AND HOLD HIM EVERY MIN OF HIS SHORT LIFE. IT GAVE EVERYONE TIME TO BOND WITH THIS DEAR LITTLE ANGEL.
HE WAS BAPTIZED AND HAD A FUNERAL IN WHICH THE PRIEST PUT EVERYONE AT EASE AND WAS A VERY COMPASSIONATE PRIEST. BEN & CHRISTINE SAID THEY WOULD NOT HAVE DONE THIS ANY OTHER WAY. THE JOY AND LOVE THEY FEEL FOR THEIR LITTLE PRECIOUS ONE WILL REMAIN IN THERE HEARTS AND MEMORY FOREVER!
WHEN THEY ARRIVED HOME, HOSPICE WAS WAITING FOR THEM AT THE DOOR.! THEY TOOK CARE OF ALL THE DETAILS FOR THE BURIAL AND EVERYTHING.
THEY ARE NOT ANGRY, BUT FULL OF JOY AS TO HAVE MADE THIS DECISION TO SEE THIS TO THE END. NOW CHRISTINE AND BEN WANT TO HELP OTHERS IN THIS SITUATION. THEY ARE IN A SUPPORT GROUP AND FEEL GOD CAN USE THEM IN A SPECIAL WAY. THESE 2 AGENCIES HELPED THEM SO MUCH! "NOW I LAY ME DOWN TO SLEEP" AND "MISSING GRACE". THE WHOLE EXPERIENCE LEFT THEM WITH SUCH PEACE IN THEIR HEARTS KNOWING HE IS IN GOD'S LOVING ARMS!
THANKS SO MUCH FOR YOUR PRAYERS!
YOU GUYS ARE THE GREATEST!
So, I finally got my hands on a copy of your book (just two weeks ago was the first time I'd seen it), and I LOVE IT!!! It is just perfect...not judgmental and just SO compassionate and lovely. It will most certainly steer women to the spiritual guidance they SO DESPERATELY need when faced an adverse prenatal diagnosis. If you impact one woman to change her decision to terminate, you have saved a LIFE...amazing work. I truly believe, as you do, that many women make this decision quickly and out of fear.
Although I knew my decision on diagnosis, your book surely would have lifted my spirits through the sharing of these stories and real-life situations, like mine.
Jennifer's son, Mikey, diagnosed in utero with multiple, serious physical problems. Jennifer was under great pressure from her doctors to terminate.
I ordered three copies and will be ordering more--already gave it to a lady whose neighbor got a Downs diagnosis at five months pregnant. . . . Thanks so much for this wonderful resource. . . . Your books are going faster than any other on our Respect Life Month table - I put one out at a time and it seems whenever I check back they are gone!! I am so grateful this information is getting out there - and thankfully we have a VERY supportive/active pastor and staff at our parish. I know many lives will be changed...many saved as well!! Thanks a bunch!
God Bless, Kathleen McCusker
Tess, diagnosed in utero with Down Syndrome
Last week I spoke at a women's retreat for a group of women from Allentown, PA. One woman in the group is a long-time friend of mine who was the first person I know personally to have a child with a severe pre-natal diagnosis. Ruth was told her baby would not survive outside the womb but Nathan lived 12 hard, long years. Ruth and her husband had one daughter prior to Nathan and three more daughters after Nathan's birth. Year after year, Nathan lingered but Ken, Nathan's dad, shares that he was personally drawn into a relationship with God because of Nathan's life. That was his purpose. There is so much to their story but I will leave that for Ruth to share sometime soon, hopefully.
I took several copies of My Child, My Gift with me and Ruth was eager to read her copy. She called me this afternoon to tell me that she wept through the entire book, able to relate on so many levels with so much within the book. She wishes she had a support system 25 years ago, family, friends, church, resources were absent or non-supportive then. She felt completely isolated and yet continued to press on. Nathan passed away just about the time my daughter, Tess, was born. That was thirteen years ago and Ruth is finally able to get some healing, thanks to several factors of God at work in her life at this time. One of these factors is My Child, My Gift.
Thank you, dear Madeline, for being obedient to the call of God on your life and making this My Child, My Gift happen!
Sorprendente! después de haber tenido a nuestra beba hace veincicinco años, es increible descubrir en los testimonios de ¨My Child My Gift¨, ¨Mi Hijo Mi Don¨, los mismos sentimientos, ideas y pensamientos. Qué importante es comunicarse con quienes vivieron la misma experiencia.
Gracias a Dios, no estuve sola, pero pienso que hubiera facilitado mucho si hubiera conocido el libro o la página, a pesar de no existir internet.
De ahora en más, no estoy más interesada en los doctores ni en quienes nos hicieron sufrir más que tener un hija limitada. Ahora deseo profundamente recordar todo el enriquecimiento que nos legó nuestra querida María Lía y compartir todo lo que aprendimos, uniéndonos a quienes deseen respetar la vida. Vale la pena!
Maria de la Paz Maroto de Nadale
I purchased your book in February and was very glad I did. I gave birth to a daughter in April with Spina Bifida, and hydrocephalus, who is doing great. Aside from a two week stay in the hospital and two surgeries, she is just like any other baby; she just has a lot more Doctor's visits for check ups.
My parents were not very supportive at all. At first they thought I should terminate my pregnancy which I could never have done. My mother has totally changed her view since my daughter has been born and is now very supportive. People are definitely scared of the unknown. No one in my family or my husband's knew anything about Spina Bifida so I think they expected the worst. I have since lent your book to several people. It made me realize that there are a lot worse things than Spina Bifida. Today people tend to use a prenatal diagnosis as a death sentence which is very scary. My daughter's neurosurgeon guessed that around 25 % of Spina Bifida babies are aborted.
Thanks for writing such a great book, I think it will save lives,
Dylan, diagnosed in utero with hydrocephalus and given a very poor prognosis. His mother proceeded with the pregnancy, expecting Dylan to die soon after birth.
wanted to let you know about something your readers may not know. I am a celiac, which means that I am intolerant to wheat, oats, barley and rye, and anything made from them. If I eat them , the villi in my intestine are stripped, leaving me unable to absorb certain nutrients. This problem is genetic, and can be symptomless; it can also result in miscarriage and trauma to a baby in utero. If a pregnant mother has this undiagnosed condition, it can result in neurogenic defects in her child, because the mother does not absorb essential nutrients through her intestine, most notably, iron and folic acid. It may be that a mother who delivers a child with anencephaly may have this condition, but that it is undiagnosed. Celiac disease is 98% undiagnosed, and is present in 1% of the population, about as many people as are diabetic. Please encourage mothers who have had children with neurologic defects to get tested for this. Any mother who has children with Down's syndrome should also be tested. I hope this information helps prevent birth defects.
Full Text of My Child, My Gift
My Child, My Gift: A Positive Response to Serious Prenatal Diagnosis
By Madeline Pecora Nugent
The full text of this book is on this page. Print copies of My Child, My Gift are available for $4.95 per book plus shipping. Books may be ordered in bulk at a reduced cost per book. See My Child, My Gift in the CFP Holy Angels Gift Shop for ordering information.
As a former pro-choice obstetrician-gynecologist who had little regard for the sanctity of human life, it was only through the grace of God that my desire to protect the unborn, and help their mothers at the same time, occurred when I asked the Lord to come into my life in August of 2000. Since then I have dedicated my life to serving God by volunteering as medical director of three pregnancy resource centers: A Woman's Concern, CareNet of Rhode Island, and Woman To Woman Support Network of Middletown, Rhode Island. For years, I have. been waiting for a resource which I could offer my patients faced with a difficult prenatal diagnosis. My prayers have been answered in Madeline Pecora Nugent’s My Child, My Gift, A Positive Response to Serious Prenatal Diagnosis.
This book is a comprehensive guide for parents who are unfortunately given the “bad news” regarding their pre-born child with either an ultrasound or laboratory diagnosis of a potential or real congenital problem. It explains to them both secular and religious faith-based strategies on how to emotionally, psychologically, and spiritually prepare for and assimilate the multiple and various emotions they will have to reconcile, as well as how to deal with the mixed messages they will be receiving from family members, friends, physicians, and their own inner conflicting feelings.
Madeline utilizes both her personal experience and multitudes of interviews conducted with parents given severe prenatal diagnoses to convey the message given by Jesus Christ, to explain to His disciples why a man was born blind, “from birth.” They asked Him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “Neither this man nor his parents sinned; he was born blind so that God’s works might be revealed in him” (see Jn 9:1-3).
I have come to believe that every life is precious in the eyes of God and should be also in the eyes of man. God is sovereign over all life and has an eternal purpose for all His creation. King David clearly declared God’s love for all pre-born children when he wrote:
“For it was you who formed my inward parts;
you knit me together in my mother’s womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
that I know very well.” (Ps 139:13-14)
I would like to thank Madeline for her relentless love for life, especially the life of the pre-born with a severe prenatal diagnosis. Her passion to “[s]peak out for those who cannot speak” (Prv 31:8) is completed by her love and compassion for the parents who are struggling to “defend the rights of the poor and needy” (Prv 31:9).
May God continue to richly bless her and her mission to convince mankind of God’s moral will regarding the sanctity of life which is found throughout His Word beginning in Exodus when He declared, “do not kill the innocent or those in the right, for I will not acquit the guilty” (Ex 23:7).
For His Eternal Glory,
Mark X. Lowney MD, FACOG
Fall River, Massachusetts
May 16, 2007
Scripture cited throughout the book is from the New Revised Standard Version (Anglicized Edition).
All human life is precious, and the birth of a new baby is just cause for wild and exuberant celebration. Sadly, however, the birth of a baby who is considered “different,” as a result of one or more medical diagnoses, is often perceived as a “tragedy” by medical professionals and many in general society. As a result, the usual new-baby celebration is quashed, along with the hopes and dreams of the baby’s parents. When a baby’s potential differences are diagnosed before birth, the situation devolves even further: physicians, other experts, and even family members often urge the mother and father to terminate the pregnancy. Little thought is given to the joys and contributions this baby may bring to his/her family, or the world, in general. Instead, the focus is on “protecting” parents from the anticipated disappointment, grief, medical bills, or other difficulties this child’s birth may cause.
But on a daily basis, the love, concern, and joy of parents whose children are born with disabilities or differences explode the myth that parents need to be “protected.” Their children—regardless of how long they live and regardless of their medical diagnoses—bring joy to their families and make the world a better place, by teaching all whose lives they touch. In this book, Madeline shares the stories of many of these parents and their precious children.
This book can enlighten not only parents and extended family members, but also medical personnel and others who hold positions of influence. And I hope this book will cause us to examine the perceptions that drive our actions. Consider, for a moment, the physician who recommends the termination of a baby with disabilities or differences. He believes he is doing “what is best” for the parents and the baby—a baby who is believed to have no potential. But what would this same physician do, for example, if his own two-year-old child were injured in a car accident or were diagnosed with a serious medical condition? Would the doctor not demand that everything possible be attempted in order to save his child’s life? Why is the life of a baby not yet born or a newborn any less valuable than his two-year-old child’s life? Would the doctor not continue to have hope, regardless of others’ opinions? Would he want others to “protect” him from the disappointment, grief, or other difficulties his child’s condition might cause?
Deep soul-searching is necessary for us to eliminate the beliefs that the life of an unborn or a newborn baby is less valuable than others. Who has a crystal ball? Who can predict the future? Who can know, with absolute certainty, that a diagnosis is correct, that having a certain condition means the baby will live or die, and/or that a baby will never achieve this-or-that? No one has the right to deny a child and his/her family the hopes, dreams, and joys that are inherent to human life. And in my twenty years of experience in the disability field, I have met many parents whose children have defied the odds, made liars out of professionals, and made their families proud!
When my own son, Benjamin, was born seven weeks prematurely, the physician patted me on the shoulder, his eyes filled with pity, and muttered, “Well, I guess you can take him home and do the best you can…” Rather than feeling sad, I felt anger—he was insulting my baby son—and I was determined not to let others’ opinions nor my son’s diagnosis of cerebral palsy (and a few other conditions) rule his life! Today, Benjamin is a successful college student who was just inducted into Phi Theta Kappa, the national honor society for community colleges, and he recently won a national film award. Despite needing a power wheelchair, other assistive technology devices, and a variety of supports and modifications, he has always lived an “ordinary” and very fulfilling life. As a child, he was in “regular” activities, like Cub Scouts, T-ball, and drama classes, and was in general education classrooms at school (instead of being segregated in special education classes). His diagnosis cannot define who he is, nor his potential!
For too long, our children have been described as having “birth defects.” What a poor choice of words—and this choice has frequently resulted in the deaths of many children. In today’s society, if we find a “defective” product in our homes, we return it to the store for a replacement or dump it in the trash. A history of language indicates that the word “defective” was not applied to human beings until the birth of the Industrial Revolution. Prior to that time, shoes, as one example, were lovingly made by a cobbler’s hands, and each shoe was unique. But with the rise of machinery and assembly lines, all shoes were expected to be “perfect,” and those that were not were labeled “defective” and were discarded. Somehow, society began applying that standard to human beings. Our children may be born with congenital disabilities or other conditions, but these certainly do not reflect “birth defects” and our children are not defective.
Some children may only be with us a short time, but their lives and their contributions are no less valuable than children who may live to grow old. I will add my testimony to that of others in this wonderful book: my life and the lives of my husband, daughter, and son have all been enriched because of what we have learned and experienced as a result of my son’s condition. There is not one thing I would change about my son: he is perfect just the way he is, as are all children, regardless of the diagnosis or prognosis.
Our children need us, and we need our children. Our children also need us to have great expectations for them, for whatever time we are privileged to have them with us. And we need to learn from them—our children are our greatest teachers. Their lives and the lessons in this book provide much-needed enlightenment on the value of all human life.
Parent, trainer, and author of Disability is Natural: Revolutionary Common Sense for Raising Successful Children with Disabilities
Woodland Park, Colorado
May 16, 2007
The room was quiet, too quiet. There was not even a sound emanating from the ultrasound machine. The radiologist was avoiding my gaze as she intently studied the screen. I redirected my head, shifting my eyes to my husband. I smiled a hopeful smile. Suddenly, the radiologist turned and bluntly addressed us, "I see gross anomalies with this baby. We'll have to call your doctor." In an instant, my dreams of a beautiful, precious baby evaporated and I was plummeted into a swirling nightmare. Inside, I was drowning, gasping for air, choking on the bitter knowledge that something was very wrong with my baby. Although the sun was shining and all around me bustled with life, the storm inside me raged and torrents of tears rushed into my pillow. Yet God did not abandon me; for, by His grace, I was rescued. I realized that this baby was my child, my gift, to love unconditionally for as long as I would have her. (Doreen, mom of Gianna who was born with Trisomy 13)
You've received devastating news that your precious unborn baby has a fatal condition or physical or mental limitations. If only you could wake up from this nightmare. If only the diagnosis were wrong. If only your baby could be cured. Your mind races through "if only's." But there is only "what is."
Now you face"what will be."
You can legally choose to end this pregnancy and, with it, your child's life. Or you can choose to continue this pregnancy until its natural end. Much has been written about ending your pregnancy. This booklet is about continuing it.
SOME FOLKS I KNEW
When I was in high school, the general practitioner's daughter gave birth to a daughter with Down syndrome complicated by physical conditions. The family nicknamed her Little Pumpkin Head and loved her to pieces until she died while still a youngster.
About that same time, another doctor's wife gave birth to Joey, another Down syndrome youngster who grew into a boy so active that his parents had to heighten the fence around their yard so Joey wouldn't climb over it.
After I married, I wrote a newspaper article on Ben who was in his sixties and fighting terminal cancer. Two days before he died, I spent the night with Ben as one of many offering respite care to his family. Through the night, Ben's entire life seemed to parade before him, and he would call out, "Jesus, help me."
A few years later, I saw a photo of a three year old child with two lower limb deficiencies and immediately had a sense that she was our daughter. We adopted Kay-Marie who today is a high school graduate with a career in floral design.
In 2005, I received a phone call from a friend whose grandson Joseph had been diagnosed in utero with the fatal condition anencephaly. Hospital staff had given her daughter literature about "pregnancy interruption." She asked me to write a booklet about birth. Shortly after agreeing, I met a second couple whose unborn daughter Arianna had been diagnosed with anencephaly. Joseph was born first and lived four days. Arianna was born by Caesarian section on her due date. She, too, lived four days. Both children had a stream of hospital visitors, both were fed, both seemed to recognize their mom's voice, both had beautiful funerals followed by pot luck dinners, and both forever changed the many people who met them.
Today Down syndrome, limb deficiencies, anencephaly, and over 800 other adverse conditions can be diagnosed prenatally. As many as 80-90% of the parents of these children choose to "interrupt the pregnancies." Those who don't are thought to be heroic by some and foolish, deluded, or ultra religious by others. However, such adjectives are wildly inaccurate. Parents who choose to bring compromised babies to birth are ordinary parents who want to give their children every possible chance. They know that they'd never "interrupt" Ben's life once his diagnosis of incurable cancer was known, so why "interrupt" their baby's life? Such parents understand that love, not intelligence, makes us human. They know that physical and mental limitations mean adjustments, but folks can live full lives with those adjustments. They sense that their child deserves nurturing, not death.
I only wish that, before I die, I can get across to one person that they must not close the door on the gift of their handicapped child. They are being given something wonderful. The doctors say, "Let's do an amnio. Let's see if the baby is missing brain cells." What are brain cells? So what if Joey had a minimum sized brain? He could give love, and love is what matters. If I had to do it all over, I would. People say, "What did I do to deserve this child? Did I do something wrong?" My two handicapped children have helped me grow spiritually. Today folks look upon suffering as bad. The suffering you embrace is the suffering of the diagnosis, of professionals and other people who think you should just end it all now. I look at all these people and I think, "You are not blessed like I have been blessed." (Erin, mom of Joey who was born with Trisomy 18 and Patrick who was born with autism)
COMING OUT OF THE CLOSET
While writing this booklet, I received an email asking if the booklet was going to be "pro-life." The couple didn't want to share their story about bringing their baby to birth unless I were going discuss termination as an equal "loving choice." As a parent of four living biological children, four miscarried children, and one adopted child with limb deficiencies, I know a little about parenting. Here's a condensed form of my reply:
Since 1974, I've counseled women in pregnancy crisis and also counseled some who terminated because of it. Every woman who faces a crisis pregnancy is under extreme pressure, and the desire to "get things back to normal" can be overwhelming. I know the fear, pain, and despair that these women feel and understand how much support they need. I've seen the end results of all choices--continuing the pregnancy with rearing the child, adoption, and terminating--and I honestly believe that termination goes against a woman's strongest instinct to nurture and protect her young. Termination is chosen out of terrible fear and lack of external and internal supports, but it violates the female soul.
Having grown up on a farm, I have seen dogs and cows give birth and nurture dead young, trying to get them to nurse and to rise. I have never seen an animal destroy its injured or dying young. When the mother animal finally realizes that the young is dead, she begins to whine, low, or moan in instinctive mourning. We humans are mammals, too. Our female instinct is strong. In nature, no woman would destroy her young, no matter how sick or deformed they were. She would do all she could to nurture and sustain them.
For women who terminate, I feel only love and compassion. But I can't say that termination is a good option. I know that women can think that it is, because doctors, family, society, and even the women themselves can list good sounding reasons causing the baby's death is preferable to letting him live. But "head" reasons don't reach the heart of the woman who aches instinctively to protect and nurture. When women terminate, more than the baby dies. Something very primitive and tenderly beautiful dies in the mother. And something very primitive and tenderly beautiful is taken away from the rest of us.
I know that women who terminate often say they are at peace. They say they made a loving choice and have no regrets. They may feel that way until they die. But I've seen too many other women push past the rhetoric and fall apart because they terminated years before. Termination ends a life that could have gone on much longer. We don't know what gifts that child would have brought in those subsequent days, and that's the question that eventually lodges in a mother's heart.
LOVE AND SACRIFICE
Life is a great web in which one plucked strand reverberates throughout the whole. Everything in nature, including the human spirit, grows stronger through adversity. When parents trust more than they fear and allow their babies to be born, we all grow a little stronger in our commitment to one another.
Human mothers are not assembly line workers who allow only perfect products to pass inspection. Each mom's baby is unique and precious to her. To deny, minimize, or ignore a mom's instinct to nurture and protect her young, no matter how compromised they may be, is to war against her soul.
Women are stronger and wiser than society wants to believe. Women humanize the world because we know how to truly love. Love demands sacrifice, and mothers know all about sacrifice. A mechanistic, productive, worldly mind cannot understand why a woman would continue a pregnancy with a baby who has certain difficulties. But love sees more clearly than reason. Reason looks with the mind, but love looks with the heart.
Jennifer followed her heart with Mikey.
When I was 20 weeks pregnant, we learned that our worst fears had come true. Mikey’s condition was diagnosed as “cloacal exstrophy,” an extremely rare birth defect affecting the bladder, urethra, genitalia, large intestine, spine and lower extremities. In addition, he had a kidney that had stopped growing and functioning. It was recommended that we terminate the pregnancy. We decided to continue on.
During my 28th week of pregnancy, a follow up ultrasound detected no amniotic fluid. We were informed that Mikey’s only functioning kidney had quit working. They told us to expect to lose Mikey in the womb or within days of his birth. They reminded me that termination might be better than continuing on. With consultation from a neonatologist and perinatologist, we made the decision to go to term and to deliver vaginally. Doctors couldn’t see any benefit to delivering via C-Section. It was also determined that it would be best not to monitor the baby during birth. They didn’t want to find the baby in distress and have to do an emergency C-Section for a baby who wouldn’t live. .
The anxiety I experienced is indescribable. I prayed that I would make the right decisions. I feared that I’d bring a child into the world who would only live to experience pain and suffering, and I ached to welcome him into a world of love and comfort. I wondered if it would be more peaceful for the baby to end things, but the thought of not giving him a chance was devastating. I tried to put my religious beliefs aside to make unbiased choices. However, I learned quickly that I had to entrust my son’s fate to God. I just wasn’t big enough for this. The doctors assured me that they would keep our son pain-free and that he’d always be peaceful. It brought me great comfort to know that I still held hope for my unborn son and that I had entrusted his life to God. .
All I remember is utter silence when Mikey was born. I thought he had died. The doctors whisked Mikey to the corner of the room, assessing the situation. A few minutes later, we heard a faint cry. I’ll never forget the relief I felt. A nurse brought Mikey over to us. I can hardly remember anything but trying so hard to engrain the memory of his face in my mind. He was a beautiful baby, and I thought that this may be the only time I would ever see him. A team of surgeons operated and found that his bowel had attached to his bladder. He was born without an anus, so they made a colostomy. He also had a mild form of spina bifida, so the neurosurgeons untethered his spinal chord. The doctors still say they’ve never seen an anatomy quite like Mikey’s. My amniotic fluid was gone because Mikey was recycling it through his own little body. His only good kidney was indeed working. I will never forget the day the nephrologist told us “this kid is going to make it!” My husband and I were completely dumfounded. It was our happiest moment ever!
I am glad that we gave our child the chance he deserved. Today, Mikey is an amazing toddler, doing all the normal things that kids do. If we didn’t tell someone about his “problem” they would never know that he wasn’t “normal.” Mikey has brought a joy to our lives that we never knew before. Even if Mikey had not made it, I could live with myself as I did everything possible to leave matters in God's hands. It was a maternal decision. I am responsible as his mother for giving him every opportunity possible. I am responsible for protecting this child as I am pregnant with him. What is the value of each life? God makes those decisions. He decides how long you are going to live. There is a reason for that baby being there. Mikey opened so many closed doors. He made me a more compassionate person. I don't look at situations the way I used to. You really understand the value of life and the value of each day after you go through something like this. I was listening to a country western song about a guy who gets diagnosed with something or other. He said, "Wouldn't it be great if everyone lived life like it was their last day?" That makes sense to me. We don't know how many days we have with Mikey so we try to make each day an incredible day. (Jennifer, Mikey's mom)
Not every story in this book ends with a living child. Mikey's life is tenuous. His single kidney appears to be failing. However, this book isn't about babies who live and babies who don't. It's about courageously giving babies a chance to live as long as they can. Jennifer and her husband gave Mikey that chance.
A serious prenatal diagnosis robs you of the baby you thought you had. But you never really had the baby you thought you had. You really had the baby you have now. An older book on parenting a child with a disability states, "You can believe that your child's condition is a death blow to everything you've dreamed and worked toward until now. Or you can decide that you will continue to lead the life you'd planned--and incorporate your child into it." I'd like to add, "Or you can trust that the future will be better than what you planned because this particular child will be in it."
Luke's life was a journey without end. There has been much more joy than sorrow, believe it or not. I miss my baby, but he did have a wonderful life. All he knew was love, and he accomplished his purpose of being sent to this earth. We try to continue to share his message of God's love for us and our need to accept His plan for our life and not fight against this plan. For those of you starting this journey, you will never be the same. You will be better. It is a hard journey but our babies are more than worth the effort. We don't look back in regret. We continue to look up in faith. God Bless (Sue, mom of Lucas Adam who was born with anencephaly)
Today's strength is enough for today. Strength for tomorrow will be given when tomorrow comes. Look through the lens of a mother's love to bring your child as far as he or she can go. Do not be afraid. Trust your instincts and fight for your child. This book, and the parents who share herein, will support you.
Madeline Pecora Nugent
 Stories shared by parents are in their own words. Some stories have been condensed.
 Simons, Robin. After the Tears: Parents talk about raising a child with a disability. Denver, Colorado: Children's Museum of Denver, 1985, preface (no page number).
CHAPTER 1--FINDING OUT
"Endure and persist. This pain will turn to your good by and by." -- Ovid
I have a plan for Jonathan
Beyond all wishes and dreams.
I have a plan for Jonathan
Greater than all that seems.
When I created the universe
Jonathan was joy in my mind.
Singing our song of creation,
United to all mankind.
. . .
Together we embrace all love
And pain of every kind;
Our plan of love for everyone,
Transforming all mankind.
To know the gift of Jonathan
Is to know his life in me.
Fantastic love! Fantastic joy!
For all eternity.
. . . .
–Monsignor James A. Brassil (Selections for a poem for Jonathan who was born with Potter's Syndrome)
Either you or someone you know has received a serious prenatal diagnosis. How can you cope with the unsettling transition from where you were before the diagnosis to where you must go? Perhaps the way to begin is to know that others have been where you are.
Learning that your unborn child has severe difficulties catapults you into a parallel universe where you are dealing with crisis and uncertainty while everyone else seems blissfully busy about the everyday.
Celine is our second child. When I became pregnant, her brother was only five months old. This caused me a bit of stress, since I was still adjusting to a new baby, and the idea of another one was overwhelming. Maybe because I was preoccupied with my own feelings, I was not really enthusiastic about the ob visits, the ultrasounds, shopping for baby things, etc. All of this changed at our 22 wk ultrasound. Suddenly, the baby became the center of my universe. (Monica, mom of Celine who was born with hypo-plastic right heart syndrome)
When you went for your first routine ultrasound, you were probably expecting to find out the baby's sex and size. You never thought that something might be "wrong" with your baby.
We were so relieved to see our baby moving. The tech pointed out the heart and spine and everything except for the brain. She went to look for the doctor. We stayed in the room talking about all our plans for this child. The doctor walked in and said, "Your baby has anencephaly. The brain never formed." My world stopped. I remember asking if this meant our baby could die and she said yes, it would definitely die. I can't even begin to write of the emotions of that day or of the pain. (Sue, mom of Lucas Adam, who was born with anencephaly)
I was rather anxious before the ultrasound – I just wanted to make sure everything was ok. You know, count the fingers and toes and watch him (or her) wiggle and kick. I figured it was normal anxiety and I was being silly. Little did I know. The technician kept looking for kidneys in the baby and couldn’t find them. That’s when my heart started breaking. The doctor threw out a few words like Potter's and oligohydramnios. Potter's is a condition that is completely incompatible with life outside the womb. She told us that we will survive, though it will be a tough road. We saw tears in their eyes, too. We were scheduled for a more detailed ultrasound. I don’t remember anything except crying in my husband’s arms. We were in shock. We closed in to ourselves and told everyone that the ultrasound had been rescheduled. We had to absorb the situation some first. (Anna, mom of Joshua who was born with Potter's Syndrome)
When you receive a serious prenatal diagnosis, you are overcome with anger, confusion, disbelief, denial, or grief. You may wish you were dead or that your baby were. You may try to bargain with God. "Let it be me instead of my baby." Your mind is too numb to process the information. How can you survive the next twenty four hours much less the distant future? How can you endure the waiting?
I spent hours on the internet looking at Trisomy 18, and everything pointed to the fact that our baby was most likely to be stillborn, or if she were born alive, she would likely live only days, hours, or even minutes. How do I even deal with this? I spent a lot of time hugging my other children, praying, and of course, crying. The praying was hard, because I didn’t know what to pray for. The emotions were really intense, and they kept changing. I was amazed at how angry I was about being pregnant and how much I hated it at that moment. I felt like it was a constant reminder that my baby was going to die. It seemed like such a waste to be pregnant when my baby was going to die. And it was almost unbearable to think about those who didn’t know and who were going to ask me cheerful questions about the pregnancy. How could I endure this? I just wanted it to be over. Eventually, I got exhausted from crying and actually felt a lot better. Later that evening, searching the internet as usual, I found the Carrying to Term pages and saw a section about early emotions that said that it is common to hate the pregnancy for awhile, but that it would pass quickly. That made me feel better (hopeful) about it, and that feeling did pass in a couple of days. (Mindy, mom of Abigail who was born with Trisomy 18)
That night I was haunted by horrific visions. I tried to pray and find comfort, but I would wake up and want to flee. I kept thinking of my baby's nose; we were told that, besides the holoproencephaly, our daughter had no nose. How would I ever find the courage to gaze upon my daughter at her birth? I had no strength to persevere and my tears flowed incessantly. I wanted to run and run and bring along a pre-term labor so I could be done. I felt so alone. (Doreen, mom of Gianna who was born with Trisomy 13)
You need time to process the diagnosis without making any decisions until you can think clearly.
The doctor described our daughter just as she looked when she was born. I was in shock. At that moment, if they had taken me to an abortion room, I would have trusted them that they were doing what was best. As it was, the doctor said, "Go home and think about how the baby is different." (Patricia, mom of Jessica who was born with limb deficiencies of both arms and both legs)
You may be in what one parent called "nothingness." Nothing exists in your mind except your child
When I received my baby's diagnosis, the book they gave me was full of a lot of stories of people who terminated their pregnancies and only a couple of stories of people who carried their babies to term. It was hard not knowing/realizing that other mothers out there DO carry their babies, too. It seems so hard to plan on carrying to term anyhow right after the diagnosis, but with time it becomes do-able. Moms need to give themselves some time before making their own decision. For me, the experience of carrying Joyann to term was worth it all. I enjoyed my time with her so much. I never regret a moment. (Jewell, mom of Joyann who was born with anencephaly)
Your feelings toward other pregnant women and healthy babies may have suddenly changed.
Right after the diagnosis, I was sitting in the waiting area. Another woman walked in, obviously pregnant. Normally I would have asked her how far along she was. I did not. I just had this sudden awareness that I was now in a different club than she was. She was still bright with expectations; all my hopes of caring for a child had just been taken away. To have started a conversation would have just distressed her. Oddly, I did not really envy her, nor did I resent other women who carried newborns in the grocery store. I did not begrudge them their child, but I did look at them and wish that my daughter might have the chance to do those things with me. Seeing them did sometimes cause me to feel saddened or wishful, and to wonder if they really knew how much of a miracle a child is. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
I had a hard time with obviously pregnant women. I hated my doctor's appointments. I would go in praying to still hear a heart beat but also wanting this nightmare to be over. (Sue, mom of Lucas Adam who was born with anencephaly)
Imagine the worst case scenario and picture yourself dealing with that. Then you will feel prepared for that and anything less.
You may ask, "Am I responsible for this?"
The radiologist said, "Here is his nose, here are his eyes, and normally you would expect to see a head behind them." What a lousy way to announce the devastating news of anencephaly! I was stunned! I put my hand over my ears and cried out to tell him to stop! I immediately turned to my midwife and said, "Carol, this is all my fault. This is because of the medication I took early in my pregnancy!!!!!." (Ann Marie, mom of Loren Joseph who was born with anencephaly)
This was my third baby, and I thought, "What if this is real? How do I tell my family? Will everyone accept her? When she comes out, how will I react?" I kind of fell apart at that point. For a good portion of the evening, I felt as if there was something I did that may have caused it. (Annalee, mom of Brooke who was born with nodules for fingers and a boneless thumb on her left hand)
Self blame is not only unhealthy; it is also false. In Loren's case, many moms took the same medication that Ann Marie had taken and without any serious effect. Brooke was affected by amniotic band syndrome for which there is no cause and effect.
Moms with excellent prenatal care have children with severe problems.
Since I had experienced three previous miscarriages and preterm labor in the latter of all my pregnancies, I made sure to take the proper vitamins and eat a healthy diet. At the beginning of my second trimester, I limited my activities to avoid complications of preterm labor. By adhering to this discipline, I believed I would have a healthy child. (Doreen, mom of Gianna who was born with Trisomy 13)
I felt a great need from the beginning of the pregnancy to not do anything that might hurt the baby. I took no meds but Tylenol, ate very healthy, and even went through two miserable sleep studies to get CPAP prescribed to improve my oxygen levels at night. I have the assurance that I did not do anything to add to Sidney's burdens. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
Then I heard the word "anencephaly. Are you familiar with it?" I said immediately, "Yes, but I was taking folic acid. What does this mean?" They said, "Of the babies that are born with anencephaly, only about half of them are born alive. Most are stillborn." (Jewell, mom of Joyann who was born with anencephaly)
Time is too precious to waste on self-blame. Blame pulls the focus away from the time you have with your baby.
You may ask:
Are the doctors right?
What can be done?
What is this going to do to my life? My family? My plans?
How am I going to handle this?
Is God punishing me?
How should I act now?
Then I started having strange thoughts and feelings like maybe my baby wasn't really alive and maybe people wold think I wasn't pregnant anymore. I wondered if people would think I shouldn't act pregnant anymore. (Mary Sue, mom of Luke Daniel who was born with anencephaly)
Will I be able to look at my child?
Yet, practical thoughts worry me: how will we react at the sight of the wounded head? Anouk is born at 5:21 p.m. The midwife just put a little cap on her head and I can finally hold her. She is alive! Is she going to start breathing? The world around me stops and the most important thing is my daughter. Although I clearly know that she is going to die, I am so happy. Joy fills the room around us; joy and peace. Anouk starts breathing gently: uncertainly at the beginning, but then in a more and more regular way. She is so tiny, especially her head. She looks like the three others did at the birth. After our parents' visit, I remain alone with Anouk. Now I am ready to have a glance under the bloodstained cap. The wound is awful but belongs to Anouk and does not shock me. The room is so quiet and I am so happy that Anouk is alive, but I must confess that I will be soothed when she dies. She certainly cannot live. (Monika, mom of Anouk who was born with anencephaly)
When we were told Sidney had a form of potentially lethal dwarfism, I researched the various conditions that could cause it. Some had very obvious defects: club foot, cleft lip, bulgy eyes and forehead, a bloated and swollen body, misshapen limbs, and other very visible and distressing problems. Could I look past the abnormalities and still love my child? This must be one of those unspoken insecurities in many, if not all, parents--can they look at a child, one who looks like people they have pitied or felt revulsion or disinterest toward, and love them because they are their child? I went online and looked for pictures of babies with the problems mine might have. Some of the defects were horrifying at first. But if I kept looking, then after a moment or two, there was just a baby there, and I found my heart was touched. I knew that I COULD love my child. After all, I love the child whom I feel inside me; it is only her exterior I do not yet know. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
You may feel convinced that your baby is going to be fine.
One night Phil came home from work and declared, “Honey, we are going to set up the bassinet and get ready for Maria to come home. If we believe that she will be healed, then God will heal her.” I had already made funeral arrangements, but we decided to concentrate on praying for a miracle. I believed that Maria was going to be perfectly normal at birth. “I tell you solemnly, whatever you ask for in prayer, believe that you have received it, and it will be yours, says the Lord” (Mk 11:23,24). I confidently clung on to these words. I typed up a novena to Blessed Margaret of Castello, a woman who was cast out by her parents for her severe deformities, and sent it to everyone I know. I asked that they pray it for 9 days and if they would like to begin it again, all the better. I also requested that they please make copies to pass along to others. We began receiving cards and letters from people we did not know, saying that they were praying for us and for little Maria. This child had hundreds upon hundreds of people on their knees. Maria died in utero about 4 p.m. and was born four hours later on December 21, 1995. Maria had spina bifida and a hole the size of my palm in her back. She was also bent at her hands and feet. She resembled the crucified Christ – the One Who came and gave His life for us. I was holding in my arms one who gave of her life for others. How privileged I was to be her mother! Maria lived a perfect life. She existed nine months in her mother's womb and went directly to her Mother and Father in Heaven. She never felt pain or sorrow. She never shed a tear, never had to experience a grueling death. She only knew love, warmth, comfort and peace. (Terri, Maria D.'s mom)
Maria's parents believed that Maria would be "perfectly normal." But she was not. Does God not answer prayer? Or does He sometimes give a different answer than the one prayed for?.
Journeying with a child with multiple disabilities is a life-prayer. We delight in the silent milestones and learn to take little steps and to delight in them. It is not the apparent, transitory successes that mark the validity of our prayer, but how faithful we are to the journey. And the journey is worth taking--worth embracing—worth living for a life-time. My son Christopher had contracted beta-strep in my womb. Deflated lungs, infection, sepsis, and five weeks in a neonatal facility on 100% oxygen would eventually leave him mentally retarded and crippled for life. I had toxemia and was hospitalized 11 days prior to his birth and I had been on some pretty potent anti-depressants during pregnancy. And now God was asking me to trust him and to take care of this child. I had been blessed by a very supportive husband, but he worked 16 hours a day. And there was so much uncertainty. But God was merciful and loving. He showed us day by day the path we should take. We had to be willing to surrender Christopher's fate to the loving Creator.. This child taught us dear lessons about suffering and resilience that have taken us through difficult family times and renewed our love for one another. He would never offend God—he was a living saint. He rarely complained of his disabilities trusting in God to give him a new back, brain, and legs when “we came back to life again” on the Last Day. I have tried to grow in patience with well-intentioned others who saw me carrying a cross, that I knew was sheer blessing. Christopher was that blessing beyond blessings and I could never live without that beatitude in my life or that source of virtue. Amen! (Mary, Christopher's mom)
WHERE IS GOD?
Not every parent believes in God. If you do, you may be angry with God. Tell God your feelings or write God a letter. Seek guidance in your faith.
One morning I read the following verse: "For the perishable must clothe itself with the imperishable, and the mortal with immortality. When the perishable has been clothed with the imperishable, and the mortal with immortality, then the saying that is written will come true: 'Death has been swallowed up in victory. 'Where, O death is your victory? Where, O death is your sting?'"(I Corinthians 15:53-55) Because I believe these words, I will be able to face the following months confidently. It is not the expectation of a miracle which helps me to endure everything, but the assurance of the baby’s resurrection and eternal life. What are eighty years of life (if she would live as long as an average person) compared to eternity? (Monika, mom of Anouk who was born with anencephaly)
Why did this happen? No one can answer that question. But you are asking it because your child's condition seems unfair, even wrong. Yet the strange and wonderful thing about "bad" is that it often brings about "good" that would never have otherwise happened.
Megan and Kate are much, much better people because of their sister Kelsey. They are nice to kids in school, reaching out to people. Kelsey has really enriched their lives and my entire family and Jack's entire family--they recognize that their lives have totally changed because of Kelsey. She has touched so many people's lives. There was a guy at church whom we didn't know who came up to us a few years ago with this huge Easter basket and he said, "I just want to tell you, Kelsey, that I come to church every Sunday and I see you with your family. I see you looking up at the lights and talking to your family. You helped me get through this terribly difficult year. I wanted to get you this Easter basket." I was amazed that here was somebody sitting across the church from us that I didn't even know. Kelsey was an inspiration to him. There was a woman in church who introduced her daughter who had disabilities Her daughter was in her fifties and her mother was in her seventies. The mother came up to us after church and said, "I wanted you to meet my daughter. I've never brought my daughter to church before, but I've been watching you for a long time and I saw that people were accepting your daughter and that gave me the strength to bring my daughter to church." Now I see her regularly there. There was another mother with a Down syndrome daughter who is probably in her thirties. The mother brought her daughter to church regularly. She saw Kelsey going up with the Confirmation students and she said to me after Mass, "Kelsey can make her Confirmation?" I said, "Of course." She said, "My daughter never did." I said, "Is that something you think she would like to do?" And she said, "Oh, definitely." So we got her hooked up so she made her Confirmation along with Kelsey. All those years ago, it wasn't something people were doing. But now they see Kelsey and they say, "Why not?" (Chylene, mom of Kelsey who was born with CMTC syndrome)
DISABILITY: NATURAL PART OF LIFE
Being pregnant with a child with a serious difficulty forces you to look at how you think.
"The beginning of successful lives for children is our unconditional belief in them and their potential for success. For many parents, this belief is often conditional, based on conventional wisdom and the system. For example, a parent may think a child can only be successful if or when he learns to walk, talk, take care of himself, or whatever. Or we may think success will only come when or if we find the appropriate treatment for her condition (medication, surgery, cure, or whatever).
"When we believe our children's success is dependent on external remedies, we're delivering our children's lives and their futures into the hands of a society that will continue to marginalize them because of their perceived imperfections and deficits. In addition, we're preparing for failure. For the "if" or the "when" may never happen. . . .
"What does it mean to unconditionally believe in your child and his future? It means that, right now, regardless of your child's label or the severity of his disability, you believe he will be successful and will live the life of his dreams. . . ..Many of us have a generalized attitude that, "I'll believe it when I see it." But when it comes to our children, we must adopt the attitude, "I'll see it when I believe it."
"When we accept disability as natural, we think differently and behave differently. As parents, we begin to treat our children differently. We don't see them as a collection of body parts that need improvement; we see them, sometimes for the first time, as whole beings. This causes us to rethink what's really important."
Disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to enjoy the opportunity to live independently, enjoy self-determination, make choices, contribute to society, and experience full integration and inclusion in the economic, political, social, cultural, and educational mainstream of American society. -- The Developmental Disabilities Assistance and Bill of Rights Act
Your child may be very seriously compromised. What abilities might he or she have?
· The ability to elicit compassion
· A strong will to live and succeed
· A perpetual innocence
· The ability to make others stop taking life for granted
· Peace of body and spirit
· The gift of overcoming great obstacles
· The grace to bring families and friends together in support of the parents
· The talent of eliciting totally selfless love
Parenting a child with difficulties is a journey and an adventure, mostly mundane, frequently jarring, sometimes sad, and occasionally mystical. All such journeys begin with a dream. And so does this one.
THE DREAM CHILD
Every parent has dreams. We might imagine that our child will become a great missionary, doctor, lawyer, parent, sports figure, journalist, educator, author, manager, entrepreneur, or cook. However, the child may have entirely different dreams, talents, and interests. Parents have to modify their hopes for their children, and you are a parent. You need to grieve the loss of your dreams.
These are the children that mothers do not "dream" about, yet these are their greatest gifts, beyond what we could ever dream. These are the children who will transform many lives. (Doreen, mom of Gianna who was born with Trisomy 13)
The child of your dreams is not be the child you've conceived. However, the child you conceived knows nothing about your dreams. She does not feel hopeless, disabled, or incapable. Nor does she know anything about diagnoses or predictions. She's happily tumbling and kicking, achieving what is normal for her and developing her unique abilities.
The key to good parenting is to crawl inside your children's skin and see the world through your children's eyes. Then you will strive to have their dreams, not yours, come true. Your unborn child has goals. They are to be warm, comfortable, and playful. When your child is born, the goals will change to being held, caressed, fed, changed, burped, and walked with. If your child lives, his goals will change. He will have certain dreams when he is ready. She will reach certain milestones on her own schedule. Help your child to become all that he or she can become. That is the goal, the journey, and the gift.
I knew from the minute I saw her. And what once would have devastated me somehow changed me. This was MY baby, not some "retarded child" I was seeing on tv. I was not anguished about MY child with Down syndrome, but about the many children with Down syndrome who had mysteriously come through my life prior to her, small messengers whose presence I had never acknowledged. I was ashamed. I loved this baby without reservation. I was already learning about my own prejudices. I knew I had better start learning, and fast. I told everyone who would listen about the Down syndrome. I was so proud of this child, I actually surprised myself. She attends a regular preschool program, potty trained before she was 3, and is a very independent little kid. She is funny and spirited, stubborn and witty. She whistles little songs all day long. She idolizes her big brother. She loves to draw, and at 3 can put all the details into a drawing of a face. She is rather amazing, but then she is mine so I see her with a touch of prejudice. (Michelle, mom of Ciarra who was born with Down syndrome)
Adverse prenatal diagnosis has changed your life. You are on a journey on which many have walked before you and many will walk after. Each journey is a bit different, but all are alike in one way. If you follow your little one's lead, you will come to recognize your child's unique abilities. You will know the gift of your child. I have not been able to find one mother who continued her pregnancy in the face of adverse prenatal diagnosis and who regretted her decision.
When Nathan was first diagnosed the blow was incredible. Because this is a fatal disease, there was that aspect to deal with, along with the fact that he would not be able to walk or talk or go through any of the developmental milestones other children do. I was in what felt like a gray fog for several months. I just went through the motions of life. I was very sleep deprived because Nathan wasn’t sleeping, plus I was grieving for my son. I do remember one day suddenly realizing time was ticking by. I wasn’t enjoying my sweet baby, nor Emilie or my husband—I was just marking time. This isn’t how I wanted to live my life, nor how I wanted to spend the precious little time Nathan probably had on earth. I wanted to enjoy every moment. So one day I just woke up and started living life again. I figured the thing to do was to fight his many illnesses and make the most of whatever time we had, giving him absolutely the best life we could. (Jennifer, mom of Nathan who was born with Menke's Disease)
Remember Aladdin's lamp, the magic beans, the frog prince? Aladdin was about to toss away an old lamp because it was so tarnished and bent, but he rubbed it and out popped a magic genie. Jack traded the family cow for a handful of beans that his mom threw out the window in disgust. Overnight the beans grew into a bean stalk that reached to a giant's treasure trove above the clouds. The frog prince sought a princess to kiss him so that he could turn back into a handsome man. What do these fairy tales have to do with your baby? They remind us that the apparently worthless and ugly is the avenue to untold value.
Your baby is not a label, a diagnosis, a syndrome, or a condition. He is a magic lamp, an enchanted bean, a frog prince.
Our world came crashing down in a matter of minutes. Our baby was no longer our baby, instead, in the medical community, she became a 'fetus with a fatal defect.' (Christine, mom of Grace Ann who was born with Trisomy 18)
So how did I react when I heard the news of our son? Even though choosing to abort his life was never an option for me, I still had a choice to make: to see him as a burden, a problem, or to accept him already then as a gift. I cannot explain why, but at that crucial moment I knew that I would accept my son just as he was intended to be. I responded with the words, “We would welcome such a child.” I felt completely at peace, and in a sense almost honored at being given this child who would be truly “special.” (Edad, dad of Benjamin who was born with Down syndrome)
If you can view your child as a treasure in disguise, the time of waiting for your baby's birth will change from a time of dread to time of joy. You will embrace the wonder of your child alive within you, and you will be able to face the future with hope.
The decision to carry my Joyann to term was a process, honestly. I knew that once she was out, if I changed my mind, there was no putting her back. I decided to go the natural way, let Joyann decide the day she would be born. As the weeks flew by, I was really glad I had decided to carry Joyann to term. The women on the internet were so loving and helpful and understanding. I also read a lot, wanting to know everything I possibly could about anencephaly Finally the day to meet Joyann arrived after nearly 5 months of waiting! (Jewell, mom of Joyann who was born with anencephaly)
My pregnancy was hard both emotionally and physically, but each kick from this little life showed me it was worth it. I felt this was the only time I was going to have with this child so I was going to enjoy it as much as possible. (Sue, mom of Lucas Adam who was born with anencephaly)
WHO TO TELL
We live with our choices. Women who end their pregnancies find that those who urged them to do so are generally nowhere to be found support-wise months and years later. On the other hand, those who bring their babies to term have the support of family and friends, through the years.
We decided to tell everyone at church and at work, thinking there would be less awkwardness if we were open about it. We did it mainly via email and by telling a few people whom we asked to tell others. That let everyone know. We also told people not to be afraid to talk to us. The response was overwhelming. The people who shared hugs, tears, words of support, and prayers were invaluable to us. For the most part, we were able to talk with everyone very matter of factly. Many people commented about how “strong” we were. We knew that it was because of all the prayers on our behalf and the peace, comfort, and strength provided by God. We trusted that God would comfort us and help us through this so that we could some day join our daughter in heaven. (Mindy, mom of Abigail who was born with Trisomy 18)
Choose carefully who you will spend time with. You deserve supportive friends.
Through the mother’s ministry at my church, I discovered the friendship possible between women who love the Lord. We truly are sisters in Him. My fourth child was conceived the same month that the mother’s ministry began. I was twenty weeks into my daughter’s pregnancy when the doctors informed us that Clare Catherine had a severe birth defect, which would make it impossible for her to survive for more than a few minutes outside of my womb. My husband and I were devastated with grief. What would I say to people when they asked about my baby? How would she be received? Would people begin to avoid me, or avoid mentioning my pregnancy? I was afraid that I would end up alone in my suffering. But I decided that I would speak openly about her, that I would rejoice in her as a beloved child of God, and that I would make the most of the brief time I had been given to cherish her. What a miracle awaited us! My sisters in Christ fell in love with Clare, too! They entered fully with me into the joy of life and the pain of death. They would pat my belly and ask, “How’s our Clare today?” with smiles on their faces and tears in their eyes. They even organized a baby shower to celebrate Clare’s life, and I have never received more heartfelt gifts. My sister SueAnn gave Clare a velvet gown with matching dress shoes, saying, “Every girl should have a party dress.” Jeannine and Therese found a haloed silver dove to represent her patron saint, Clare of Assisi. I received many picture frames and photo albums and from Ann, a little baby pink rosary that Clare later held at her funeral. Mirna wrapped up a big box of diapers, saying, “I believe in miracles, and I’m praying for one for you.” (Elizabeth, mom of Clare Catherine who was born with anencephaly)
 In this book, either the male or female pronoun will be used at random, with the understanding that either sex child is meant.
 Kathie Snow. Disability Is Natural: Woodland Park, Colorado: BraveHeart Press, 2001, p. 229.
 Ibid., p. 231.
CHAPTER 2 -- TESTS AND TERMINATIONS
God never shuts one door but he opens another. -- Irish Proverb
I’m sitting here remembering your beautiful face
And longing to hold you once more.
My love for you will never cease
It’s you that I’ll always adore.
My child, please know that I miss you so much
And the pain inside me still grows.
Our time together was way too short
The reason, only the good Lord knows.
I know that you’re now in Paradise
And yes, that brings me great joy.
But I’m your mom and it’s hard to let go
Because you still are my little boy.
So pray for me, son, for my heart to mend
For it always will be filled with sorrow.
Time does not diminish my love for you
I’ll miss you yesterday, today, and tomorrow.
By Renee Pierson
Prenatal testing is both a blessing and a burden. A blessing because knowing that your baby has difficulties can help you plan ahead. A burden because knowing about your baby brings with it pressure to "decide."
WHY SCREEN ALL PREGNANT WOMEN?
The Genetics Center, which offers "straightforward answers to common questions" via the internet, has this question and answer:
Why screen all pregnant women?
During a pregnancy, every couple is concerned about whether their baby will be healthy. Fortunately, over 95 percent of babies will not have any significant health or learning problems. Two relatively common disorders, Down syndrome and spina bifida, most often occur where there is no family history of these disorders. Since they are both serious conditions that can be prenatally diagnosed in the early stages of pregnancy, screening can be very helpful for any pregnant woman.
The site goes on to discuss what will happen if the test results are abnormal.
If an abnormal screening result is obtained, a couple may be asked to consult a geneticist, who will obtain a detailed family and pregnancy history, review the results of the screening tests, and help the couple and the obstetrician decide how to proceed with further testing.
The information sounds innocuous. However, an "abnormal screening result" may prompt a doctor or geneticist to advocate pregnancy termination.
Based on the level two ultrasound, the doctor felt certain that our baby had Trisomy. He was insistent that I have an amnio to confirm the diagnosis. At first I resisted due to the risks involved with amniocentesis, but the doctor pushed me to have it done, to definitively rule out Trisomy. I was sent to a genetic counselor who told us all the horrible things Trisomy babies deal with. He strongly encouraged us to terminate. Even if the baby lived, he would have all these complications. When we told him he would not terminate, he said that they could not help us and we were on our own. (Sandy, mom of Casey who was born with Trisomy 18)
The perinatologist, who was somewhat sympathetic, asked us, "What did we want to do?" and offered her help. A bit confused, I asked her what she meant. Well, of course, "Did we want to terminate?" (Doreen, mom of Gianna who was born with Trisomy 13)
The attending physician sent us to the genetics counselor. The counselor emphasized how horrible and fatal the condition was. We told her that termination was not an options. I asked her if she had any support for me. She said she would get back to me and give me the name of someone who had a child like this. I am still waiting. (Christine, mom of Grace Ann who was born with Trisomy 18)
Every single one of the doctors came up with same diagnosis of Potter's Syndrome and they all recommended that we terminate the pregnancy. (Donna, mom of Jonathan who was born with Potter's Syndrome)
Certain tests are accurate only if the exact time of conception is known.
Michael researched the triple screening test and learned that the results were only accurate if the blood test is given knowing the actual weeks of gestation. There was no way my doctor knew the actual gestation of our baby. Yet she informed me in a very matter of fact way that we had a problem. I think of parents who rely on the results of the triple blood screen tests and trust their doctor's advice to consider aborting their baby. They don't realize that the tests are reliable for detecting healthy babies but unreliable for detecting abnormalities. Too many women have relied on the test results and aborted what they thought was a baby with an abnormality only to learn afterwards that the baby did not have any abnormality. Not to mention that the message being sent to society is that disabled people should be eliminated and that parents should be spared from raising these children. Why can't we just accept people the way they are, with their differences? (Lisa, mom of Brady who was born without any disability)
If first tests indicate a problem, doctors will schedule additional tests. Some mothers refuse these.
My doctor said there was a problem with the baby's bowel. He wanted me to undergo an anmiocentesis and I refused. It became a battle of the wills. If I had the amnio, the doctors would have discovered Joey's Trisomy 18 and they would have pressured me to abort. I wanted to avoid that pressure. (Erin, mom of Joey who was born with Trisomy 18)
I remember refusing the alpha-feto-protein test, saying, "No. That would just give me one more thing to worry about." The nurse kept pushing the test at us. Finally, my husband blurted out our religious beliefs and said we wouldn't terminate even if something was wrong with our child. The nurse then said, "Oh, so you'll take whatever God sends you?" and we said "Yeah," then left, a little annoyed. (Jewell, mom of Joyann who was born with anencphaly)
By 7 months, I had preeclampsia. The baby was measuring small. The following month the doctor sent me to a geneticist. The geneticist suspected Trisomy 18. I was 30 weeks pregnant. My doctor began to monitor Maria with a continuous sonogram and to treat my preeclampsia with bed rest. The geneticist informed me of the perils of Trisomy 18. She and my OB were persistent in trying to persuade me to have amniocentesis to positively identify the baby's genetic disorder. It was suggested to me that positive identification would lead to induction of labor and subsequent birth. I knew this would kill her. Since I had recently re-read the Holy Father's encyclical on the vocation and dignity of women, the significance of the dignity of the human person was fresh in my mind.. To allow them to determine the diagnosis of Trisomy 18 positively would be a direct assault against the baby's dignity as a person. My husband and I chose to make the doctors go blind--to treat me for preeclampsia and allow God to bring Maria to birth in His time. (Jeanne, mom of Maria G. who was born with Trisomy 18)
Amniocentesis comes with a risk of miscarriage. Some parents do not want to take that risk.
As for Emmil, we didn't know through the whole pregnancy whether or not he had Down syndrome. We did NOT get any further testing. The doctor told me to get the test just so I would know for sure to alleviate stress. I knew that there was a risk of miscarriage and I wasn't about to risk that AT ALL (Ashli, mom of Emmil who was born without Down syndrome)
Doctors often assume that parents choose follow up tests in order to terminate if a serious problem is confirmed.
As no therapeutic intervention yet exists to cure D(own) S(yndrome) (Author's Note: or most other prenatally diagnosed conditions) or ameliorate some of its manifestations in utero, prenatal screening and diagnosing have almost exclusively existed to allow women the option of terminating their pregnancies. Knowing this, health care providers have historically operated under the assumption that if a woman consents to prenatal screening or diagnosing, she must believe that having a child with DS (Author's Note: or other prenatally diagnosed condition) would be an undesired outcome and wish to terminate her pregnancy if such a diagnosis were made prenatally. The results of this study indicate that this is not true for all women. Consequently, health care providers should appreciate that many women consent to prenatal testing with ambivalence or no intent whatsoever to terminate.
My husband and I thought our son had Down syndrome because of what a perinatologist told us at a 20-week appointment. The nuchal fold was chubby, and he said that only 1% of the children he saw with our son's measurement DIDN'T have DS. meaning 99% did. "Go ahead and get an amnio today so you can take care of it as soon as possible," he said. I think he was a little disappointed when I told him I'd let him take my arms and legs before I'd let him take my child. (Ashli, mom of Emmil who was born without Down syndrome)
HOW INFORMATION IS PRESENTED
We generally trust the medical community to present factual, unbiased information. However, the presenter's personal bias may color the way information is presented.
"There's definitely a feeling out there that a life like this is not worth pursuing to the end of the pregnancy. I don't know how we've come to this end, but we have. A large portion of the obstetrics community believes these lives are less worthy, in the sense that babies that appear to be normal are, in a sense, more worthy. . . . You can speculate on the reasons as much as I can. Is it abortion on demand? Even the March of Dimes; healthy baby program -- the March of Dimes does a tremendous amount of good work. But the promotion is based on identifying and eliminating unhealthy babies. Somewhere, we have developed a definition of healthy and, in pursuit of 'healthy,' there are babies deemed unhealthy. Their moms are strongly steered toward termination." (Dr. John Wagner, "Witness to Love: The Short, Beautiful and Inspiring Life of Grace Ann Nugent," 5-11 January 2003, p. 17)
I anxiously asked him what the treatment was, and he matter-of-factly said, “There is no treatment; you must terminate.” My doctor made an appointment for a more detailed sonogram. The radiologist also recommended that we terminate. We saw several other specialists, including perinatologists. Every single one came up with the same diagnosis of Potter’s Syndrome and they all recommended that we terminate the pregnancy. (Donna, mom of Jonathan who was born with Potter's Syndrome)
"Termination of pregnancy has become the de facto management of choice for lethal fetal conditions, and health care providers as a group may be more favorably disposed to this method of management than either the general public or pregnant woman herself. Others have speculated, and our own experience has suggested, that if a specific model of prenatal care for these patients is instituted and explicitly presented as an option, the number of patients choosing this form of management may increase. Therefore, some providers may question the wisdom of committing resources to an approach possibly encouraging what they perceive as a 'less than optimal' parental choice."( Dr. Nathan J. Hoeldtke and Dr. Byron C. Calhoun, "Perinatal Hospice," American Journal of Obstetrics and Gynecology, September 2001, p. 528),
In simpler words, most of the medical community believes that the best way to deal with "lethal fetal conditions" is termination of the pregnancy. The same might be said for other conditions which are not fatal or not immediately fatal. These would include Down syndrome, sickle cell anemia, cystic fibrosis, muscular dystrophy, limb deficiencies, hydrocephalus, and any number of conditions involving correctable organ defects. For example, 90% of babies who are diagnosed in utero with Down syndrome are aborted even though Down syndrome is not a fatal condition.
Obstetricians often have little direct contact during their training with children who have developmental disabilities Physicians often distance themselves from their own personal beliefs in a commitment to provide balanced information for the new mother. A survey of 499 primary care physicians revealed that 63% reported that they "tried to be as unbiased as possible about delivering a prenatal diagnosis." Thirteen percent reported that they "emphasize" the negative aspects of D(owns) S(yndrome) so that parents would favor a termination, 10% actively "urge" parents to terminate, and 10% indicated that they "emphasize" the positive aspects of DS so that parents favor continuation and 4% actively "urge" parents to continue the pregnancy.
Just look at these statistics again. Twenty three percent of obstetricians interviewed purposely present a diagnosis of Down syndrome in a negative light, so that the parents will "choose" to terminate. That's one doctor out of four. Your doctor may be that one.
The emphasis on "preventing" illness or birth defects has come to mean preventing people who have certain illnesses or birth defects. Kathie Snow, mother of a child with cerebral palsy, warns, "Do not let a disability label or a doctor's prognosis convince you that your child needs to be changed. She doesn't need to change or be changed; society needs to change. Your child is fine just the way she is. Your child is perfect. If you don't believe that, change the way you think! Change your definition of perfect; don't try to change your child. Either all of us are perfect or none of us are." "Your belief in your child and his potential has a greater influence over his success than his disability." We obtain medical care and services, not to "fix" our kids, but to help them realize their potential.
To be a mother of a child with a disability is not for sissies, but there is good news-- it will change you. I wondered if I could be a good mom. Could I actually cope with all of the doctors, the trips to the emergency room, the surgeries, the testing? There were times when I didn’t think I could. I did. This was my son, my flesh, a blessing, an opportunity to raise a child that I had borne to love and to cherish. I assumed I would do all of the teaching, but this young man has taught me how to continue to be a good and better person altogether. I owe this to my son, who, twelve years ago, was born with such a dismal prognosis that his life would not be worth living. A life that could not possibly be of any benefit to himself or others, a life that, without given the chance, would have been lost and what a much emptier place this world would be. (Ashley, mom of Nick who was born with spina bifida)
DIFFERENCES IN PERCEPTION
Doctors tend to see babies as clinical diagnoses while mothers tend to see them with love.
When I was 20 years old, I, although pregnant, left my abusive boyfriend. When I went to the doctor, the health care workers said things like, "What do you plan to do about this pregnancy?" In my mind there was only one thing I could do-- have a baby. In the 6th month of pregnancy I had my first ultrasound. I'll never forget the words. "Your baby has an abnormality in the brain." At my next ob appointment a women doctor proceeded to explain that I would be better off if I terminated the pregnancy. She told me my baby would be retarded, and that a termination would be best for him. His condition was called hydrocephalus, (fluid on the brain). I was determined to have this baby even if the whole world was against it! Another doctor recommended that I have labor induced at 32 weeks, so that a shunt could be put in his brain to drain off some fluid. I told God that I would love my little boy and accept him no matter what. God did give me a healthy baby; the surgery was never needed. Although he still has hydrocephalus, it has caused no problems. Dylan is almost 9 years old now, and how I would love to take him to the doctors and show them the little boy the world would be" better off without." (Shellie, Dylan's mom)
Widely used by doctors, The Catalog of Prenatally Diagnosed Conditions (Third Edition) by David D. Weaver and Ira K. Brandt, MD's (Baltimore, Maryland: The John Hopkins University Press, 1999 with periodic updates) lists over 800 conditions that can be diagnosed in utero. The text also details how to make the diagnosis. Compare this clinical description of a terminated "fetus" diagnosed in utero with "Urethral Obstruction Malformation Sequence," which includes "Posterior urethral valves" with a mother's description of her son with the same condition:
The fetus reported by Nevin and associates (1983b) also had distention of the bladder, abdomen, and ureters, and hydronephrosis; diagnosis of trisomy 18 was made. After termination and an autopsy, the fetus was found to have double-outlet right ventricle with an overriding aorta, ventricular septal defect, and hyoplastic left atrium and ventricle. There was no neural tube defect present. (The Catalog of Prenatally Diagnosed Conditions, p. 180-81)
At the perinatologist's office, our son was diagnosed with a rare condition called posterior urethral valves (PUV). The perinatologist also suspected either Down's syndrome, Trisomy 13, or Trisomy 18. It was suggested that we terminate the pregnancy. We decided to seek treatment options. In my 33rd week of pregnancy, I went into early labor and had to deliver our son via emergency caesarian section. A team of pediatricians began working right away on our 6 pound 14 ounce precious little Tanner. Tanner had only one very underdeveloped lung that would not be able to support life. This was a direct result of the PUV. We spent the next 36 hours holding Tanner and loving him. Although I knew my son was dying, I had never been happier in my whole life because he was the greatest gift I had ever received. I would do it all over again just for those wonderful 36 hours that we had with Tanner. (Renee, Tanner's mom)
Here is another description from The Catalog of Prenatally Diagnosed Conditions and then a mother's thoughts on her child born with the same condition:
Holoprosencephaly (Includes Aproscenephaly; Cebocephaly; Cheilognathopalatoschisis; Cyclopia; Ethmocephaly) . . . Aprosencephaly . . . The infant reported by Reynolds and Waldstein (1989) had microcephalus, a bony defect of the calvarium in the center of the forehead, a diamond-shpaed opening in midface, a single fused ocular structure, absence of the nose, small philtrum and mouth, and absence of the premaxilla. At autopsy the cerebral hemispheres were absent and replaced by separate cystic structures, the prosencephalon was represented by an ovoid mass, and there was absence of the crista galli, cribriform plate, and the first, second, fourth, and sixth cranial nerves. (The Catalog of Prenatally Diagnosed Conditions, pp. 96-97)
I will never forget my Gianna moving and growing inside of me. I loved her so much. I knew that her birth would bring her death and I did not want to say good-bye. I prayed for three things: for acceptance of God's will, for great good to result from her life; and that she would have a nose (because of the holoprosencephaly, she was supposed to have a large cleft between her eyes and an open hole where her nose would be). Praise be to God, she was born with a nose and my children were able to meet her and we have pictures hanging on our wall of her. I also know that a great good will come from this. She has already affected many lives. She has had so much impact on me. God is transforming me. Everyday I pray that God will guide me. For the first time in my life, I am truly listening to His call and have my ears and heart awaiting His direction. (Doreen, mother of Gianna who was born with Trisomy 13 and holoprosencephaly)
Doctors are capable of considering as worthless even normal babies who are unwanted by their parents:
We had a 24 week gestation baby born today. Mom came into the emergency room with pain early on, wouldn't answer questions of gestational age since little pre-natal care. .Baby born early afternoon. Good MD took right to warmer. Spontaneous cry,(little boy), only needed oxygen, no CPR. When Pedi NICU Docs arrived, were told Mom didn't want baby. But this attending MD said, "I have a patient here, and he's good. I think we need to go forward.." So, despite the fact that one fellow in OB reminded us all Mom hadn't wanted baby right now, we did everything. (Judy, an ob-gyn nurse)
If a doctor is willing to forego treatment for a premature but healthy, yet "unwanted" baby, what might be the response if the baby has a serious health issue?
A euphemism is the substitution of an agreeable or inoffensive expression for one that may offend or may suggest something unpleasant. Euphemisms are very common in dealing with serious prenatal diagnosis. Terms that traditionally refer to pregnancy and birth are applied to what traditionally has been called abortion. This makes abortion sound like birth.
We were given 2 choices: we could terminate or we could continue the pregnancy. Most women terminate. "Could you, my doctor, do the termination?" "No, you would have to go to the Women's Center." "But that is an abortion clinic!" I finally understood. Termination was abortion! In my shocked mind I had not understood that! I need to hold my baby not have it torn apart in pieces! "In that case we can induce labor but would have to inject a solution into the baby's heart to stop it before inducing." I can't do that! That would cause my baby to die! (Sue, mom of Lucas Adam who was born with anencephaly)
Is your doctor suggesting birth or abortion? Ask your doctor, "Are you suggesting termination so that my baby will be born alive and have the maximum chance of survival or so that my baby will be born dead or dying?" Birth's intent is to bring a living child into the world. Abortion's intent is to bring a dead child into the world.
The Level Two ultrasound showed that my baby did have anencephaly. They said my baby wasn't "really alive" She was only able to live through circulation in the umbilical cord. I asked, "How can she move and kick then???" They said it was all due to the circulation, and that made no sense to me. They likened me to her life support. I thought of patients on life-support, lying motionless, out of it. That isn't my baby! She moves at will and is very much alive. Joyann would punch out on my stomach, and my husband would push in that spot, then she'd go "bam bam" real hard back in the same spot. Seems to me, if it was all random, sporadic movements, the baby wouldn't be able to move in very controlled movements like that. I feel the doctors just want to "dehumanize" our babies, so they can justify ending their lives. The perinatal center offered a D&C, saying one doctor "may be able to pull the baby out in one piece." I said, "Certainly not!" They then talked about induction, of giving birth to the baby after they medically induce labor. I thought it sounded better than abortion. I gave them permission to see if my insurance company would cover the procedure. A few days later, I got a phone call saying it was arranged for me to deliver my baby! I said, "I'm not ready yet!" They pushed me, saying, "It has to be done before 24 weeks." I said, "The perinatal center said I could be induced at ANY time in my whole pregnancy." "Well, the hospital won't do it past 24 weeks." It started to sound like termination to me. (Jewell, mom of Joyann who was born with anencephaly)
Many parents want to continue a pregnancy while their medical team wants to end it. The parents think about the positive outcomes of giving birth while the "experts" paint a bleak picture. Parents are looking for support and information while doctors are pressuring them to decide quickly. Is it any wonder that many parents conclude that termination is a necessity?
The doctor did another ultrasound and confirmed what the other hospital had seen. He told us that the best thing was a selective reduction, which is injecting the sick baby with saline that will kill him. He didn’t explain to us more options or ask us to think about it. We were in shock and scheduled the procedure for 4 days later. I remember sobbing and thinking that we were going to have to end our baby’s life. My husband was inconsolable; we keeping thinking back at the images on the monitor of the babies and their little hearts beating, but we thought that this had to be done to save the other twin’s life. That Tuesday we went to the hospital. The nurse brought the babies' images up and I started crying - I asked her what the sex of the sick baby was and she told me "A boy." Our son - our beautiful son - we were never going to hold him or tell him that we loved him. The other baby was a girl - our daughter - she would never know her brother or play with him. The doctor could see how distraught we were and he asked if we were sure we wanted to go through with it. I looked at him puzzled and said: “We have a choice?” He then explained that there was a possibility that both babies would abort and that it is quite possible to carry both twins full term but that the anencephalic baby would most likely be born dead or die within minutes of being born. My husband and I agreed that it was not up to us to make this decision – who were we to take the life of our son - to not give him a chance - miracles happen every day. So we left with both our babies. As long as they were inside of me I would make sure they were okay. (Jennifer, mom of Matthew who was born with anencephaly and his twin sister Emily)
THE WHY OF TESTING AND TERMINATION
Doctors, geneticists, family members, clergy, and friends may suggest termination. Why?
They want to alleviate your suffering.
The attitude of doctors seems to be that the woman can't handle an adverse diagnosis so they want to take it out of the woman's hands and they think she will thank God for their intervention. They don't give women any credit for being able to handle the baby. But if you have the baby, once the baby dies, you want to do it all over again. (Erin, mom of Joey who was born with Trisomy 18)
They think you can forget about this baby and try again, and the sooner the better.
She told me that my child’s prospects of even being born alive were slim and that if he were born he would have no quality of life. She told me that there really were no alternatives. She told me that I was doing the right thing, and I could be pregnant again and have a healthy baby. She turned back around with an appointment book to schedule an abortion. (Stephanie, mom of Chandler who was born without any disability)
They are concerned about your physical stamina or mental health.
I also went to see a councilor as I was very worried about how the kids would handle me carrying to term. He advised me not to go through the pregnancy as I had a diagnosis of depression and he was worried about my mental and emotional health. What about my mental and emotional health if I had to live my life with the knowledge that I consented to kill one of my children? He said not to worry about the kids as they would adjust to whatever and would follow Doran's and my lead. (Sue, mom of Lucas Adam who was born with anencephaly)
They think you can't handle a child with a health problem.
My family thought I'd have a nervous breakdown, that carrying the pregnancy to term would destroy me. My family didn't think of me as someone that selfless. I think carrying to term is something most people would not do so they can't grasp why someone would do it. It really challenges their belief system, makes them ask how far are they willing to go. Andrew was born and he lived five days. He did not have nearly the amount of problems that doctors thought he would have. We were able to hold him and it was beautiful. He died on Easter and it was a gift, an incredible journey. I feel like the odds which the doctors gave me were manufactured. They tried to encourage me to end the pregnancy. Most of these babies will be born if given a chance even though they may not thrive. Doctors think that women can't handle it. (Emily, mom of Andrew who was born with Trisomy 13)
They fear that your family will be harmed by a child with a health problem.
They fear they cannot meet the needs of the child. I am nobody special. I had no experience with cancer when I had to learn to care for Alex who got leukemia. I have a little experience with some issues that Sidney may face, but know nothing about feeding tubes or breathing support. But I know I can learn. And I trust the doctors and nurses to teach me well before they send me home. (Laura, mom of Sidney, born with lethal dwarfism)
They don't want the child to suffer.
They fear that the child will not have a good quality of life, and that their condition may cause them suffering, or that treating the condition may cause suffering. We did not want to subject Sidney to needless suffering. But pain that could give her life, or that would help her live better, would be worth it. Quality of life for babies is an issue of love. If they can give and receive love, then life is good for them. Babies who suffer butare loved, live because they choose to. I do not want my baby to suffer, but I do want her to live the life she is fighting to live. I want to make sure that while she fights, she is loved, held, and cared for. When she stops fighting, we will let her go. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
They don't know how they can handle supporting you during the pregnancy or after the baby is born.
I told my obstetrician that we wanted to continue the pregnancy and give our child the best possible chance. He told me that we were taking the “harder road.” I asked him three times if he would follow me for the duration of the pregnancy. (He had never had a patient willingly choose to continue a pregnancy with a fatal diagnosis.) He said that he would follow me, but I could sense some reluctance. I asked him for resources including support groups for women who choose to continue their pregnancies. He said, “There are no groups like that available.” I asked for the name of another mom who had continued a pregnancy. He replied that he did not know any. I felt very alone. (Donna, mom of Jonathan who was born with Potter's Syndrome)
They want to lower hospital and insurance costs. These costs will be minimal if you terminate. However, if you give birth to a living baby who requires treatment, the costs could be very high.
The results of the blood test prompted the doctor to order an amniocentesis and ultrasound. It was fully paid for by the State of California, as would be the abortion. I was given a consultation, warning me of the risk for a woman my age giving birth to a child with a disability. This process was about Ben as a long-term expense to the state versus a short-term expense of an abortion. This would be the first of many experiences that would be a clear reflection of attitudes in the policies that guide the lives of people with disabilities and their families. My life's work would become a challenge to those attitudes. (Terry, mom of Ben who was born with multiple disabilities)
They want to study your baby clinically.
Most of these babies are terminated. Doctors advise that parents terminate, then agree to an autopsy so they can "study the condition and learn more about it". They do NOT want the parents to continue the pregnancy and try to help the baby LIVE, which would certainly teach them MORE about the condition than dissection ever could. Such an attitude is unfortunately common. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
If you are carrying twins or triplets and one of the babies is compromised or dying, people may fear that the presence of the dying baby will threaten the lives of the sibling(s). This is not true.
The ultrasound was being made, first the baby at the right, then the baby at the left and then everything went silent. One baby had anencephaly. She would certainly die, either before if not soon after birth. In my thirty second week of pregnancy, Anna and Tess were born. At first I was afraid to look at Anna, but she was beautiful. She lived four hours and will always be in our hearts. When we came back to the hospital after the funeral, we immediately went to our daughter Tess to hold her close and to share our grief. Tess is 4 years old now and a lovely child with a heart of gold. I am proud to be the mother of my two girls, and I believe that some day we will meet again. (Tineke, Anna's and Tess's mom)
Many professionals may fear that you might sue them if you continue your pregnancy. You cannot sue if you end the pregnancy because, even though the pressure to terminate may have been very strong, ultimately the decision is yours. However, if you proceed with the pregnancy and you feel that your baby was improperly treated, you could sue the physician, hospital, and/or other professionals for malpractice.
The routine ultrasound revealed that Andrew's brain and stomach were completely full of fluid. The doctor said, "It looks like the baby is compromised and has hydrocephalus." I already had two children with Down syndrome (our first born and then her brother whom we had adopted) and I wanted to continue the pregnancy. The doctor said, "The baby looks so compromised that it could effect your health. You need to get an amino to be sure." The amnio revealed that the baby had Trisomy 13. The likelihood that he would make it full term was 10%. I was fine with those odds. I just wanted to nurture my baby and, if he didn't make it, I would honor his life in utero. All information from the doctors was really negative and disappointing. Our pediatrician was horrified. He saw "lawsuit" written all over this. (Emily, mom of Andrew who was born with Trisomy 13)
Many people have accepted a utilitarian philosophy that every human being ought to have a minimal "quality of life" or "health." Babies with severe health conditions require "too much money" and may never be able to "to produce" or "be useful." One doctor termed this attitude "handiphobia," that is "fear of people with handicaps."
Today I was reading an article about ethicist Dan W. Brock at the University of Rhode Island’s tenth Honors Colloquium lecture November 19. “Society might be better off if it prevents the birth of blind and severely disabled children.” Blindness and severe cognitive dysfunction are two disabilities Brock would prevent. Ben was born deaf-blind. His cognitive and physical disabilities would gradually reveal themselves. According to Brock, “Preventing a severe disability is not for the sake of the child who will have it. Rather, it is for the sake of less suffering and loss of opportunity in the world.” I see things from quite a different point of view. (Terry, mom of Ben who was born with multiple disabilities)
They do not value the lives of those who are disabled and can't imagine that some people do.
"Of course, no one wants to adopt a defective baby " This was said with much emotion (and not much charm) by an older gentleman in a class at a local university. Since I had told the story of my daughter Karen, born with Down syndrome and a severe heart defect, the pro-abortion students were extremely vocal about the personal and societal justifications for aborting a baby like Karen. Hence the statement about no one wanting to adopt a "defective" baby. "Happily, sir", I told the senior student, "you are wrong. Even back when I had Karen, I found out from the National Down Syndrome Association that there was a list of people waiting to adopt a baby with Down syndrome. Just last night," I added, "I found a new website for matching prospective parents with children who had chromosomal and physical defects." The student refused to believe that this could be true. (Nancy, Karen's mom)
People may believe that the baby has no soul, is not a person, or is not human yet.
We remembered this passage from the book of Psalms. "You formed my inmost being; you knit me in my mother's womb. I praise you, so wonderfully you made me; wonderful are your works! My very self you knew; my bones were not hidden from you, when I was being made in secret, fashioned as in the depths of the earth. Your eyes foresaw my actions; in your book all are written down; my days were shaped, before one came to be. How precious to me are your designs, O God; how vast the sum of them!" (Psalm 139:13-17). We knew that God made Arriana just the way she is and that His ways are perfect. (Stephen, dad of Arianna who was born with anencephaly)
Some do not have a strong faith in God or in a Power higher than themselves.
The thought of abortion did cross our minds when we reached a low point, but that passed and we trusted that God knew what he was doing when He created this child. (Patricia, mom of Jessica who was born with limb deficiencies of both arms and both legs)
NEGATIVE EFFECTS OF TERMINATION
Some parents terminate their pregnancies without remorse. That is not always the case.
There is no more devastating experience in a woman's life than to have her child destroyed in her own womb. The loss will never go away. The fact of a deceased child is just as real to the mother who had her child aborted as it is to the mother who sacrificed to save the life of her child but who tearfully stands beside his grave. With one exception; the guilt of a mother who has aborted is overwhelming, and especially so when it has been denied. (Joan, mother of an aborted child).
Parents who terminate may be left with regrets and the nagging feeling that you did not do all you could have done for your child.
Josephine had a heart defect and a rare chromosomal disorder. A genetic doctor explained that, if our child lived, many surgeries would be needed to correct muscular and skeletal problems. Our baby would be severely physically and mentally retarded. Her physical features would be distorted and deformed. I had never been so afraid. One of the doctors stated that we needed to discuss our options. I thought she was referring to what needed to be done at the time of delivery. She was actually speaking of abortion, or “terminating the pregnancy”. My mind was reeling. My first response was “no way.” But somewhere between that moment and that evening, I had decided to kill my beloved child, my Josephine. At 36 weeks- 9 months-- pregnant I laid in a clinic while a doctor injected my baby’s heart with something to stop it from beating. I then went into labor before I was supposed to, and the doctor had to inject my baby again in order to make certain that she would definitely be dead when she wasdelivered. It was the most selfish act I have ever committed, and I regret it every single day. I have come a long way since then. But I hurt so much. I still can hardly bring myself to speak to Josephine, my daughter in Heaven. I still cannot forgive myself for what I’ve done. Why didn’t anyone tell me that I would carry around this guilt and sorrow? Why wasn’t I informed that my “choice” would cost me so much, emotionally and physically? Why didn’t anyone remind me that a sick baby needs her mother to care for her and love her? (Dina, Josephine's mom)
Your spouse may not initially be supportive of carrying your baby to term. It takes time to adjust.
My husband thought that I was out of my mind for two months. I had to go forward with or without his blessing. It was a very stressful time in our marriage. Eventually my husband became really, really supportive. He is so proud of Andrew and in love with him, and now he totally understands why we went through to birth. (Emily, mom of Andrew who was born with Trisomy 13)
The news given by the doctor didn't leave me feeling anxious until the baby's father said, "We will have an abortion then. Life would be too hard for the baby." Today Ben's dad loves his son deeply, but the journey he is on is quite different than mine. (Terry, mom of Ben who was born with multiple disabilities)
Fathers, too, can be adversely effected when they end their child's life.
We went for a sonogram at about twenty three and one half weeks. Emmanuelle was diagnosed with a brain anomaly which included seizures and clenched fists. I don't see clenched fists. I don't see seizures. All I see is the most precious beautiful profile of a little girl looking skyward, eyes bright and open, the most beautiful of my three children, with her hands in front of her as if she is praying. This is the image etched in my mind forever. I let the doctors kill my daughter via a huge needle, a shot to the heart through my wife's belly as she lay sedated. I sat nearby, quietly praying to the Lord, "Save her soul." The doctor had taken a picture of Emmanuelle. I suppose it is a picture of her lying dead on the table. I have not looked at the picture. But I know exactly where it is. I will always know. The grief is unbearable sometimes. Does the fact that I murdered my daughter show on my face? (Eric, Emmanuelle's dad)
Prenatal tests are usually accurate. But sometimes they are not.
My pregnancy was rough, my boyfriend was not very supportive. Once I saw the ultrasound at 18 weeks I was in love! Then my world came crumbling down. The baby I had thought of terminating months earlier, whom I had grown to love, would possibly be born with birth defects. My ultrasound showed a dark spot on the heart, enlarged kidneys and thickening of the neck, which are characteristics of Down syndrome. I was at greater risk because my uncle has Downs. They couldn't guarantee me a healthy baby without an amnio, which I refused, because of the miscarriage risk. I was told I could terminate up to 23 weeks if my baby was to be mentally impaired. My boyfriend and I decided to hope and pray for the best. Shane William was born, 3 days late and perfect. (Bonnie, mom of Shane who was born without Down syndrome)
In September of 2001, my whole world changed. The first blow was the terrorist strike on 9-11. I began to question the security that I had held so dear to my heart. In the weeks that followed, my doctor told me that I was pregnant. My husband and I were struck with disbelief. We had taken precautions. The early months of my pregnancy were grim. My husband. lost his job. We were forced to survive on my income. My son, who was two, was diagnosed with a seizure disorder. We lost our medical insurance. My daughter was three. We finally found state funded agencies that would assist us in finding insurance. After enduring this struggle for three months, my husband found a new job and I went for my ultrasound alone. The ultrasound technician said that most likely the doctor had predicted the wrong due date. So I was scheduled to come back in two weeks. It appeared that my child was a good candidate for Down syndrome and that my child's stomach was outside of his body. I had miscarried my last child and the emotions of that time came rushing back. One week later they added the possibility of toxoplasmosis, and water on the brain. I couldn't understand why God would let this happen. I lost my daughter and now I was going to lose my son. Even if I didn’t lose him, how could I take care of him? I already had a child who took so much energy dealing with his disabilities. The genetic counselor recommended an abortion. I asked her, "How could I even consider killing my child based on a theory?" She suggested an amnio which would confirm any doubts. I asked why this would not be performed before recommending an abortion. She told me in cases such as mine there is little doubt so it is unnecessary, but they would do it if it eased my mind. I was also scheduled to see a pediatric cardiologist. The cardiologist found a hole in his heart that should close up by the time he was born, but couldn’t tell us that for sure. We were offered information on the abortion process once again. When the amnio and blood tests results were in, the genetic counselor told me that the tests came back negative, but there were strands of genetic defects that are undetectable. I was to come back for further testing. Everything came back in our favor. The doctors ordered another ultrasound. The new diagnosis was Dwarfism. I was scheduled for an induction (three weeks after the due date). My son was born 5 pounds, 12 ounces, 19 inches. Chandler's head was swollen. His soft spot was enormous. The CAT scan came back fine. Now Chandler is 18 months old. He has not only met his developmental goals, he has exceeded them. My child has no signs of any of the disabilities that were predicted for him. (Stephanie, mom of Chandler who was born without any disability)
Consider prenatal test results to be "probably correct." Accepting the diagnosis enables you to make plans for the future.
 Skotko, Brian G. "Prenatally diagnosed Down syndrome: Mothers who continued their pregnancies evaluate their health care providers." American Journal of Obstetrics and Gynecology (2005) 192, p. 675.
 Skotko, Brian G. "Prenatally diagnosed Down syndrome: Mother who continued their pregnancies evaluate their health care providers." American Journal of Obsetetrics and Gynecology (2005) 192, 670-71.
 Kathie Snow. Disability Is Natural: Woodland Park, Colorado: Braveheart Press, 2001, p. 63.
 Ibid. p. 64
 Merriam-Webster On Line Dictionary definition. m-w.com/dictionary/euphemism'
 Dr. Carlo Bellieni, neonatologist, in his course "The Myth of the Perfect Child," given at the Regina Apostolorum Athenaeum's School of Bioethics. From a Zenit News Agency internet release, 16 December 2005.
CHAPTER 3--DEALING WITH DOCTORS
If you do not hope, you will not find what is beyond your hope. -- Clement of Alexandria
You Were Worth It All
You were our first child and it was so very exciting
When we found out that you would soon be arriving.
There was much work to do
To get ready for you
And we thanked the Lord for His wonderful blessing.
But when the day came for the ultrasound
We found that our whole world turned upside down.
Some said we should terminate
And not leave it up to fate
They thought we could just bury the past in the ground.
But we were determined to do all that we could
Because being your parents we felt that we should.
There were many amnio-infusions
And two in-vitro operations
Whatever we could do to help you we would.
Finally the day came when you were born
But when you arrived the doctors looked forlorn.
We didn’t hear you cry
Our minds went awry
And we felt like our hearts had been shattered and torn.
They whisked you away before we saw you
They told us that they would do all they could do.
We prayed to our God
Our strength and our rod
For the fear that we felt we never before knew.
Soon they took us to see you in NICU
And our hearts overflowed at the sight of you.
In our eyes you were perfect
You definitely were worth it
And we got to spend 36 wonderful hours with you.
Now that you are gone we have no regrets
Just happy memories we’ll never forget.
We’re proud you’re our son
But your job here is done
We’ll be together again soon but not just yet.
Renee Pierson, mother to Tanner
One mother of a child with severe difficulties noted that every parent of such a child is a pioneer. Every parent is striking out into uncharted territory and discovering things others have not discovered about children with their condition. You must become your child's advocate.
Your doctor and medical team are crucial, but they are human. Some doctors have difficulty seeing patients as individuals, families as unique units, and babies with difficulties as worthwhile humans. They may view you as a "case" rather than a person, thus distancing themselves from you . They want successful outcomes but may consider them impossible in your baby's regard. "Underneath it all, people are primarily afraid of failing. Professionals are not so different from you and me. We're all afraid of the unknown; we're all afraid of failing. Most of us try to avoid situations in which we might be uncomfortable or unsuccessful."
Then, after moving, I had to find a new OB doctor. None of the doctors would accept me as a patient since my baby had anencephaly. They said I’d have to go to a perinatologist in a nearby city. I didn’t want to drive all that way. I didn’t even have a babysitter for my son. Then I found another doctor in the phone book that said high risk and called them. They accepted me right away and he is a wonderful doctor. I’m so thankful to God that I found him (Mary Sue, mom of Luke Daniel who was born with anencephaly)
Take along a tape recorder when you visit your doctor. Tape recording often encourages a doctor to stick to the facts. You can listen to the words over and over, to process them fully and make clearer decisions.
If a physician refuses to allow a tape recorder, consult another physician.
Parents are often given statistics and probabilities. Here are some questions to help make sense of these:
How accurate are these statistics? Is this information based on current data?
Do these numbers pertain to MY child’s exact condition?
What are the numbers based upon? How many individuals were in the study?
Are these statistics for THIS specific hospital and doctor?
What is the experience of the entire team?
What is the timeline of the statistics? Are we talking about survival in the hospital or after discharge?
Who are the top 3-5 experts in this field? How can I find their studies and contact them?
Who is giving me this information and what motivations might he or she have? How is the information being presented?
How often is this condition incorrectly diagnosed?
Is amniocentesis necessary? Will its findings change the treatment options? What are its risks to my baby?
What would you do if this were your child? On what factual information, beliefs, ethical views, professional, and personal experience do you base your view? Have you ever personally faced this dilemma?
If you are told that the pregnancy could become life threatening, ask the following questions and tape record the responses.
What are the life threatening conditions?
What are my chances of developing each one, in percentages? In other words, please tell me that there is a ____% chance of my developing this condition if I continue.
On what do you base the information and percentages?
What would be the signs that the condition you describe is developing?
What would be the signs that this condition has become life threatening?
What is the danger to me of waiting to see if this pregnancy will or will not actually bring me to the brink of death?
Doctors can be casual in unsettling ways. If your doctor calls you by your first name, call her by her first name. It is demeaning to be called Beth if you must call your physician Doctor Green. If your doctor starts to make small talk about your family, make small talk about his family. Being personable goes two ways.
You may also hear any of several authoritative comments.
You have to decide quickly.
Ask: Why? What if we wait?
You need to trust your doctor.
Ask: How many cases like this have you seen? May we speak to other parents who have had children like this? How many babies like this have you delivered? I am going to seek another opinion.
Too much information will be confusing so don't research the condition
Ask: Do you think we are too stupid to understand what we may find out? How could more information be confusing when we are already terribly confused with very little information?
You don't really understand what you are dealing with. You are in denial.
Ask: Are you saying that, because I have hope and because I want to move forward with the pregnancy, that automatically means that I am in denial? Why do you find it hard to believe that we want to give birth to and nurture our child?
My Obstetrician/Gynecologist had been treating me for non-ovulation and had often rebuked me when I would ask her to let me go off the pill just to see what happened. It seemed her attitude was that I should have accepted my infertility and enjoyed my career and sexual freedom. The fact that I was pregnant seemed to annoy her. She estimated I was three months pregnant and took blood to screen for Down syndrome among other conditions. My doctor called to let me know that our baby was going to suffer from severe Down syndrome. She delivered the news in a tone that seemed to say “I told you being fertile and having children was not as wonderful as you thought.” She suggested Michael and I discuss what we "wanted to do". I told her that we would be having our baby. She insisted that we seek counseling in order to “cope.” She also suggested I have an amniocentesis. I said that we would not need an amniocentesis. She certainly made me feel I was making poor decisions. She treated me with a minimum degree of respect. I should have found a doctor that supported our decisions and helped us celebrate our baby’s birth. (Lisa, mom of Brady who was born without Down syndrome)
Your baby is suffering.
Ask: What evidence do you have that our baby is suffering or will suffer? What can be done to alleviate suffering?
Completing the pregnancy will endanger your health.
Ask: What to you mean by "endanger?" What are the odds of my developing that condition? May I see the statistics? What are the signs that I am developing a problem? What can be done if I do? How mild might the problem be? How severe?
Walter and I felt my doctor was just “going through the motions.” We did not feel that he really understood what we were doing. And we also felt that he may be concerned about his own liability. We reassured him that we would not sue him, .that we wanted to give our baby the best chance and that we wanted to have a little time together to collect memories. He softened to some degree, but he just did not seem to fully “get it.” He told us that our baby may not survive childbirth, and he told us “I do not want to do a C-section on you because you already know the outcome. I’m also concerned about the medical risk to you.” After many, many conversations with him and prayers and support from those at hospice, we chose a C-section if our baby’s life was in danger. We wanted to do everything we would have done for our other children. We let my doctor know of our decision. Now he REALLY thought we were crazy!!! He told us he was getting some resistance from some of his colleagues and the hospital staff where I would be delivering. Once again, Mary, director of Pediatric and Bereavement Services at the Hospice, intervened on our behalf. (Donna, mom of Jonathan who was born with Potter's Syndrome)
Completing the pregnancy is emotionally unsound as your grieving will be too intense.
Ask: Is this your opinion or has this been proved by medical research? How can you know how we will grieve?
The baby is going to die anyway so why not end it now and try again?
Ask: Are you telling us that, if our four year old were diagnosed with terminal leukemia, we ought to end his or her life at the time of diagnosis? Would you give this advice if your mother received a diagnosis of terminal cancer?
Your child will never____________ (fill in the blank--go to Harvard, hold a job, have a family, walk, speak, etc.)
Ask: Are you measuring the value of life by what a person can potentially achieve? Are you therefore implying that all people who cannot ___________________(fill in the blank as the doctor did) ought to be terminated? If your child were disabled in a car accident and could never do _____________ (fill in the blank as the doctor did), would you terminate him?
My son Nick was born 12 years ago. I can recall the sounds and smells of the hospital, the look on the faces of the nurses, the dismal prediction of my son’s life given to me by the pediatric neurosurgeon on call, my feelings of hysteria and confusion. His predictions of my son’s quality of life could not have been more dismal if he would have walked up to me with a piece of black construction paper and told me “this is your son’s life”-- how dependant he would be on others, how he could not possibly be able to walk or have any meaningful function of his body, I never, and I mean never, accepted that as fact. I listened carefully to everything I was told, I read every bit of literature about spina bifida I could get my hands on, but I settled within myself that “we would see.” My son has undergone many painful surgeries and, while I would not choose this for my child, this is my son. His life by some standards may not be easy. I would be hard pressed to name someone that had an easy time in their lives, regardless of disability. I’ve learned in twelve years of being Nick’s mom many wonderful lessons. What does my son feel like having a disability? He’s a happy young man. He doesn’tspend his time feeling sorry for himself. I see him pushing himself beyond all limits that others have placed on him. (Ashley, mom of Nick who was born with spina bifida)
Your child will be a burden on society.
Ask: Are you saying that our child is not worth what it would cost to treat him or her?
Your baby may have to endure _____________ (fill in the blank with "a lot of tests and procedures," "mental retardation," "physical disability," "people staring," etc.) so why make him or her suffer?
Ask: Are you saying that there is no medication for these tests and procedures? Are you saying that the benefit of these procedures is negligible because they might cause suffering while they are being done? How do you weigh the value of a procedure against the outcome of improved health? Do you believe that it is better to be dead than to live with mental or physical disability?
At my fourth month prenatal exam, the doctors said, "We see one hand and the left hand looks like it is missing some digits. It does look like she has a thumb, but we don't feel there is any bone in that thumb. This could be caused by amniotic band syndrome which is very common. Fibrous amniotic bands are floating in the uterine fluid, and, if these wrap around a limb or digit, they can restrict blood flow and cause damage." They brought a counselor back in. They did say, "You have options. You can terminate this pregnancy." My husband and I said, "Options? We are talking about a perfectly healthy baby except for a few fingers missing. There are no options here. We will be here to talk with her about it." (Annalee, mom of Brooke who was born with nodules for fingers and a boneless thumb on her left hand)
Your other children will be effected because your baby will never be a real participant in family life.
Ask: How do you know what this child's influence on our other children will be? What proof do you have?
My own children have grown in compassion and understanding from being exposed first hand to Alex's needs, so I do not fear that I am placing a burden on them by bringing Sidney to our family. I feel instead that I am giving them something precious that will help to set them apart in a good way and make them better parents, better friends, and better contributors to society. Giving my kids this valuable experience will teach them to handle adversity in their lives, care better for their own children, face death if need be and know they can survive, and to care for the elderly in their lives better than they could otherwise do. These are things you cannot teach by just telling them. They must experience the rewards of giving of themselves to someone who can give nothing back except love. This is why I want Sidney to live long enough to come home. Because I know that she can help our family be a better family. (Laura, mom of Sidney, who was born with a lethal form of dwarfism)
It will be a financial and emotional drain to care for this child.
Ask: Are you familiar with the financial and emotional status of our family that would cause you to say this?
A high percentages of marriages with a disabled child fail.
Ask: Are you aware that the same number of marriages fail when pregnancy termination is done for disability?
You may not be told that:
Your child with a fatal diagnosis could be born alive and live for a short time after birth.
You can speak with other parents who have borne children with the same condition as your child.
You can receive help from parent support groups.
There are false positives for some of the prenatal tests.
No one can tell with certainty the degree of disability or deformity.
Many doctors have never seen or treated a child with your condition and do not know what to expect.
No one can tell with certainty what your child will be able to do or how long he or she may live.
Menke's Disease is a fatal genetic disease and we were told Nathan would not likely live to see his second birthday. He was very, very small all his life, and at his death (age 14) he weighed only 16 pounds and was only 36 inches long. But this made him portable, very handy since he couldn't walk, anyway, and it made him all the more easy to hold him and love him. :) Despite all these problems, he was the happiest, most sunshiny child you could ever want to meet. His smile caught everyone by the heart, and held them there. (Jennifer, mom of Nathan who was born with Menke's Disease)
There are many parents who have given birth, knowing in advance that their children had this same condition.
Having a child with difficulties strengthens some marriages.
There is absolutely no question that our marriage got stronger. I would go through a period of having a really hard time and Jack would be the strong one and then we would flip flop and it seemed like one of us was always holding the other up. Kelsey was our second child. Megan, our first, helped us stay focused and get out of the hospital and do fun things. We knew we had to have a life for Megan. We have some friends who ended up divorcing but I think a big part of it was the mother. Suddenly the other children were not getting attention and her husband was not getting attention because she was going to travel the world to make her son all better. (Chylene, mom of Kelsey who was born with CMTC syndrome)
MEDICAL LIBRARIES AND ON LINE INFORMATION
You will want to obtain up-to-date information on your child's condition. Your physician may not be able to supply this.
I also telephoned the midwife, and like my uncle, she urges me to continue living normally and to give this baby everything I would give to a healthy child. She gave me a website address on anencephaly. (www.asfhelp.com). I can see for the first time pictures of newborns with anencephaly and the testimonies of the affected parents. This helps me during the following days knowing that I am not alone. People have lived through the same experience, and it is not completely crazy to keep the baby. If the world cannot understand our decision, God does. (Monika, mom of Anouk who was born with anencephaly)
Much information is on line and in medical libraries. Keep searching until you find what you need. Share the information with your medical team.
I found this web site to be very helpful: www.bladderexstrophy.com. Also the book, Living with Bladder Exstrophy, that I ordered through the Bladder Exstrophy website. I found the chat via this website the most helpful. It connected me with others living through a similar experience. I also frequented our local medical library where there was an expert librarian who pulled information from websites and bookmarked medical journals for me to read. Medical libraries can be a big help. Usually the person working there really wants to guide you to the best resources. (Jennifer, mom of Mikey who was born with cloacal exstrophy)
There is a technique to finding information via the internet.
When faced with a poor diagnosis, you want to know all you can about it, and you want to know how to find hope. This is a combination of medical, and technical info. I start with a Google search, because it generally turns up the best medical searches.
To get started, use the common term. For instance, "dwarfism". This will return hits of pages which are geared toward giving basic information. This is also how you find out what the medical term is for a condition or symptom.
If you really want to dig deep, then use the medical term as the search term. For dwarfism, that would be "skeletal dysplasia". This returns hits aimed more at the medical community. It also means you may be buried in technical terms. You can do a search on Google for the term you do not understand (time consuming), or if you can find a page that is in eMedicine.com, you can highlight a word and it pops up a dictionary window with a definition in it. Best though, is to just buy a medical dictionary. They are cheap. Bookmark the pages that you think are worth looking at again.
When a negative prenatal diagnosis is presented, it may only be a collection of featuress. We were told our daughter had short limbs, a constricted rib cage, ventriculomegaly, potential heart abnormalities, and that I had polyhydramnios. These features can be part of several types of short limbed dwarfism, but most are in the "lethal" or "semi-lethal" neonatal types. Because we knew that the condition was a type of skeletal dysplasia, we were able to search on that. But often you have to start with the feature, and learn what conditions might contain that feature.
Even when you know the condition, it is wise to research the features separately. This helps you understand what each one means, and what treatment might be available. It also helps you to understand what else your child might have if the condition was misdiagnosed. Other diagnoses with similar features are called "differential diagnoses". On professional medical pages you will often find differential diagnoses listed, and you can research those also to understand what other conditions are similar. Treatments are offered for some similar conditions. . .
When using a search engine, to get varied information you really have to go 5-10 pages deep. You also need to change your search terms in as many ways as you can think of - we researched "skeletal dysplasia", "curved femur", "bowed femur", "lung hypoplasia", "thanatophoric survival", and other combinations. I wanted to find not just the standard rhetoric, but the few pages that said something just a little different. It is only as you research more deeply that you find examples of the few exceptions, the ones that lived a little longer, the ones that were misdiagnosed, or the times when the condition was not as severe as first thought, or new treatments for less common conditions.
One other source of hopeful information is personal pages. Those are usually buried pretty deep on the search engine pages. These pages, and sites which contain personal stories, are so very encouraging, because they give day to day examples of living with both the diagnosis, and the child, and they contain a range of outcomes. Reading them can help you to face the range of possibilities and to know that if that family could survive it, then you can too, even if you do not want to have to.
Researching can be VERY discouraging. Most medical information available on negative prenatal diagnoses is extremely termination oriented. A lot of the case studies are on aborted fetuses. Much focus is placed on the poor chances, and very little is given on the exceptions or the times when it turns out good. 99% of what you find will depress you. But if you can persevere, and focus on the little bits you find that are good, that 1% that is hopeful may be the difference between you seeing your child as a lost cause, and seeing that there is a chance for them to accomplish something exceptional. In fact, the medical community does not give much attention to the kids who make it. They seem to gloss over that. They say no child with thanatophoric dysplasia ever lived without a respirator, but I found two who did. They say that no child with Trisomy 13 has ever lived past the age of 6 months. I found a child who was two years old with it.
Even though some days were so discouraging as I found only the same negative information, I am so glad I was able to search the net for information, because it provided the few grains of hope that I needed to believe my baby had a chance, no matter how small. And it prepared me to deal with her issues if she can in fact make it. I know what support services she is likely to need, and I know that even though I do not want to have to learn some of what I will need to learn to care for her, that I can face it and do it. (Laura, mom of Sidney who was born with a lethal form of dwarfism/)
Medical journals can supply much information, too. You may be able to research these at your local library and request copies through interlibrary loan. Many medical articles are on line.
For just about every condition there are a number of medical journal articles. Just plug in the subject in the (browser's) search bar. Various articles will come up, and then you just have to dig through them for helpful information. I steer away from websites that are agenda driven or merely devoted to general childhood illness, family medicine, etc. I want websites that give verifiable, reliable MEDICAL information, with sources and references that are well-documented. If I am looking for treatment information, I gather a good number of resources that appear to be reliable and verifiable, and then compare the conclusions and look to see if there is a consensus. I look at credentials and to see if the information is current. I look to see if the information presented seems biased or more of a personal point of view. There is a lot of quackery and medical misinformation presented as truth, and it's important to stay away from that. Use good judgment and care in picking resources and checking documentation. (Jennifer, mom of Nathan who was born with Menke's Disease)
The more you know, the better you can prepare yourself and your medical team for your child.
I worried about the challenges and sort of spent a season lamenting the loss of the dream of a normal child. I admit I didn't want Down syndrome, but I wanted my child, THAT child, and if he had it, then we'd all live with it. We read books about Down syndrome to try and better acquaint ourselves with what our life was more than likely about to become. Basically we just fastened our seatbelts and knew that, come what may, love would find a way. That's what love is. (Ashli, mom of Emmil who was born without Down syndrome)
Search for a doctor who will support you and your baby. Having such a doctor makes all the difference in the world.
When we finally met our fetal cardiologist in person, we immediately sensed that she had a very positive approach. She spoke and behaved as though she wanted our baby to live. We believed that she would find a way to help us. She gave our baby a new diagnosis, HRHS (hypo-plastic right heart syndrome). We were suddenly introduced to the world of chambers and valves and spontaneously produced pencil sketches of our baby's abnormal heart. The diagnosis was easier to take this time around because we had a plan to pursue. Soon after birth, our baby would have the first of three open heart surgeries that would allow her heart to function with only one working ventricle. (Monica, mom of Celine who was born with hypo-plastic right heart syndrome)
I spoke with the pediatrician. He treated me like a rational intelligent human being, and discussed potential issues and treatments. He had no problem with our wishes to give our daughter the tools she needed to survive, without forcing her to survive, if she could. He was the first doctor who was willing to look at more than just the diagnosis and actually assess her as an individual. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
You may have to educate your doctor and hospital staff. Your doctor may never have delivered a child with your child's condition.
My obstetrician had never delivered a baby like this. My baby and I were going to be pioneers - and we needed to teach the professionals how to do this. My local hospital had never dealt with a case like this. My obstetrician told me to write up a birth plan which I did after much research. Several weeks later, my obstetrician got the amnio results confirming full Trisomy 18. He told me that he knew we were dealing with "only one patient now". He also said that we would have a regular delivery instead of a C-section. (Before Grace was diagnosed, my previous children were C-sections and she was going to be one, too). Also he said it wasn't important to monitor her. I left the office feeling uneasy. I called a "pro-life doctor". I told him I wanted to switch to him. He was friends with my OB, and told me that he would talk to my OB and to give him another chance. During the next visit I grabbed the doctor by the shoulders and said, "Look, if you don't see me and my baby as 2 patients -I can't work with you!" He said, "I know, I know, I talked with Dr. S. and he told me that you called him. I understand. All you want is to hold your baby for 5 minutes. You tell me what you want and I'll do it." From that point on, all the decisions revolved around maximizing the chance of having a live baby. My OB told me he will never be the same. Grace had a profound impact on the doctors that worked with us. My OB took my birth plan and distributed it to all of the nursery/ob staff and had meetings with them to plan the delivery. I met personally with the Head Nurse of Labor and Delivery as well as with the Head Nurse of the Nursery, Neonatalogist and VP of the Hospital. Much planning went into Grace's arrival. As the nurses told me, "Chris, there wasn't a protocol written to do this kind of thing. You wrote the protocol." (Christine, mom of Grace Ann who was born with Trisomy 18)
 Snow, Kathie. Disability Is Natural. Woodland Park, Colorado: BraveHeart Press, 2001, p. 74.
 Information on dealing with statistics is condensed from "Life and Death Decisions" by Debbie Hilton-Kamm, www.benotafraid.net/article.asp?id=19. Debbie's son Braedon was born with hypoplastic left heart syndrome.
 Alex had leukemia.
CHAPTER FOUR: PARENTING OPTIONS
Be patient with everyone, but above all with yourself. -- Francis de Sales
I admire my brother Nathan.
The reason is because he is handicapped and still is happy, and never complains.
He has Menke's Kinky Hair Disease.
It is a very rare disease, and it is a very hard word.
He is five years old right now.
Another reason I love him is because he almost died a few weeks ago!
He is patient and tries hard.
He is happy, cute, has a cute giggle, and he doesn't cry very much.
He's very gentle.
He is always sick but doesn't complain.
He can't do very much.
He can't talk or walk, but he really enjoys watching me dance and play.
He smiles a lot and he loves me a lot.
He likes people to sing to him.
Inside he is like everybody else.
He teaches me to be brave.
I love him and admire him very much.
Emilie Elisabeth Saks, age 7 (spring, 1987, published in Focus on the Family Clubhouse Magazine, 1989. The assignment was to write about their most admired person in their lives.)
Many of us like to be in control. Receiving a serious prenatal diagnosis can make you feel powerless.
Shortly after we received our news (that our unborn child had Down syndrome), severe panic attacks began to interfere with my sleep at night. Soon, they would hit hard and strong during the day as well. These were due to my own personality type. I like to have things under control and, if they are not under control, I want to fix it. And this was something I couldn't control. (Nina, mom of Tess who was born with Down syndrome)
It's generally good to be in control, but sometimes we can't be. It's important to plan, yet all of us have lived through unexpected experiences and have had to make decisions based on emerging information. Some of what we anticipated never happened, and some of what we never anticipated did happen. Right now, you can only make an educated guess about some of the many questions concerning your baby. Take one day, even one moment, at a time. Try to enjoy your baby now. You will live through the future when it arrives.
Grace was the most helpless creation - she brought out the goodness of people. Grace provided an opportunity for many people to love unconditionally. People couldn't do enough for our family. The hospital bent over backwards for us. My friends and family continue to support and love us. Grace did more in 2 months than some people do in a lifetime. She was pure love, and she experienced pure love. I thank God he blessed us with her. She was worth it all. (Christine, mom of Grace Ann who was born with Trisomy 18)
THE IMMEDIATE CHOICES
Every parent who receives an adverse prenatal diagnosis faces the immediate choices of how they will view the situation. Some of these choices are:
· To fear the future or to go forward in confidence.
· To grieve for your imagined child or to love your actual child.
· To be overwhelmed by questions or to research answers.
· To give up in despair or to fight discouragement.
Some days I was so discouraged. After a day of depressing reading, I wondered what difference it would make anyway. But each time I considered giving up and not trying to help her live, I felt so dark and awful that I knew it was not what I needed to do. I believe this baby was sent to me because I WOULD fight. I think she came to our family because we could accept her completely, and love her regardless of her limitations or how short her time. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
· To see this diagnosis as the end of your world or to see it as the beginning of a new world.
· To consider this pregnancy a disaster or an opportunity.
· To view your child as a genetic blunder or as a serendipitous gift.
· To focus on the pain in each day or to seize the joy.
First I didn't believe that our child had a fatal condition. I was always optimistic that there had been a big mistake, but I was not getting any bigger and he was not moving much. Then I went through a brief period of thinking, "What's the point? He's going to die anyway." Then I realized that if this baby wasn't going to live, this was my only chance to be his mom. I didn't know how much longer we had. I can look back and say I did everything to protect and nurture him the only way I could. (Sandy, mom of Casey who was born with Trisomy 18)
· To pinpoint the suffering or to transform the suffering into triumph
· To close in on yourself or to reach out to others who can help.
· To deny your feelings or to acknowledge them.
· To cave in to negativity or to shoulder through it to trust.
We had so little time left to enjoy her presence, but in that time, she taught us many silent lessons on the nature of love. During those last months that I carried Clare, my life was interwoven with intense joys and sorrows. Our Lord was so close that I expected to meet Him around every corner, and in fact I did, in the eyes and the words and the actions of the faithful people He placed in my path. (Elizabeth, mom of Clare Catherine who was born with anencephaly)
· To cling to your world or to enter your child's world.
· To do what others think best or to let your child show you what's best for him.
· To isolate your child or to fully integrate him or her into society.
· To see life with your child as a dead end or as an opportunity.
The decision on whether to carry or terminate was a hell no parent should have to go through. I have never believed in abortion, but my first thought was, "How can I get out of this?" I did think about terminating. Who really doesn't? I think I was in shock and am now glad I took time to think this decision through. I asked God for a sign. He literally gave me one. I drove past a church that always has a sign with a daily message. This day it said, "Regret looks back. Faith looks up." I knew then that I had been fooling myself if I thought I could terminate. Only God can decide when a life ends. I felt like I would be killing one of my children. I would not do that to my other kids. I did not want to look back in regret. My husband felt the same way. My pregnancy was hard both emotionally and physically, but each kick from this little life showed me it was worth it. This was the only time I was going to have with this child so I was going to enjoy it as much as possible. I also decided that I could be angry or that I could continually feel sorry for myself, but what would it change? If I accepted God's plan, I would honour my child more than if I were an angry mess. Don't get me wrong-- there were days I had a hard time even getting out of bed, but when I didn't have the strength to go on, I prayed and God sent me His strength. (Sue, mom of Lucas Adam who was born with anencephaly)
The first choices will drain your energy and poison your spirit. The second ones will energize you. You may not be ready to fully embrace the second choices now. Aim toward them.
I am fully aware of the “cost” of raising such a child, in terms of illness, education, and family support. We have already frequented cardiology, gastroenterology and audiology departments of local hospitals. There have already been plenty of sleepless nights as we struggle to keep him gaining weight; and this is just the first three months. But I also know that such children and adults draw out of us optimism, creativity, and patience in a way no “normal” child can. Such true “children” offer a reminder that the value of our life is not measured by what we achieve but by how much we love. The future will bring many more challenges but we are confident that, as we accept the gift of his life, we will see how our lives are enriched. Benjamin is a person, unique, whole, to be loved, who will bring to us far more than we can ever give him. (Eldad, dad of Benjamin who was born with Down syndrome)
SUPPORT ONE ANOTHER
It is critical that those directly connected to the baby's life support one another.
At 15 weeks gestation, we found out that one of our twin babies had died. At 19 weeks gestation, our baby daughter Lucy was diagnosed with an omphalocele, where the intestines develop outside the body. We were advised to abort. We were told that our baby would either be a real "inconvenience", or worse, she would die minutes after death. We decided that we would take her whatever way she came, and would not regret it. This is a poem I wrote to her after she was born.
As I sit at your bedside today, you, my beautiful 5 day old daughter, I think of your father.
I THINK OF YOUR FATHER, Lucy, the man who held my hand tightly as we saw your tiny, twinkling, blinking heart on the ultrasound screen next to the very small, still body of your twin.
I THINK OF YOUR FATHER, Lucy, the man who let me sob on his shoulder after the doctor told us you had a fatal birth defect. I looked outside her office on that gray day, my tears mixing with your father's as our dreams for you fell apart.
I THINK OF YOUR FATHER, Lucy, the man who refused to end the life of a child he may hold for only a few minutes after birth, as she took her last breaths.
I THINK OF YOUR FATHER, Lucy, the man who cried tears of joy as you entered this world, sputtering and coughing, the heavens opening up and shining on the 3 of us as you were bundled up and carted away for surgery.
I THINK OF YOUR FATHER, Lucy, the man who called me with a quavering voice, telling me you had made it through perfectly. We cried together.
I THINK OF YOUR FATHER, Lucy, a man who knows what is right and does it, who stands up against the evils in this world, who leans on his faith in God instead of the world's knowledge to give him what he needs to be the rock for his little family.
So, my little Lucy, when you don't know what to do, when the world is telling you one thing and your convictions tell you another, just do what I do. Think of your father. (Rachel, mom of Lucy who was born with an omphalocele which was surgically corrected)
Often mothers and fathers have different reactions to the pregnancy.
My husband felt more out of control. It is hard for men to see their wives suffering--they want to fix it but they can't. My husband could be detached from the pregnancy, even forget it for a few hours, but I carried our dying son around 24 hours a day. It was hard for my husband to watch me go through that. Men get over the pregnancy differently, too. It's not as intense for them. The hormones that get you ready physically and emotionally for the baby are still there even if the baby dies. The day of Casey's funeral my milk came in. All those chemicals get you ready for the job to do and you don't have it to do. It's not the same for the husband. The baby does not really seem real to them until he or she is born. (Sandy, mom of Casey who was born with Trisomy 18)
Talk to your spouse about what you are feeling.
Sidney's problems were so big, and so scary, my husband did not want to have to think about it. When I talked to him about her, he sort of tuned out and went away! One morning I told him that I felt like I had eight kids, and he had seven. I pointed out that he never spoke of her, had never said her name, and let him know how lonely and isolated I felt. At the time I was battling doctors to get them to acknowledge that she had value, and I needed his support, and told him so. He did try after that. He began making an effort, and it got easier for him to face things as he took the time to make jokes about my stomach, or to pat it as I went past. I have even heard him refer to her by name. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
One way to foster communication is by writing letters to one another. Each parent should tell the other the troubling things the other does or does not do. Set a date to be alone for several hours. On the day of the date, each buy a rose. Exchange roses and letters. Talk about the content of the letters and how to solve the problems shared.
Continue the communication. Have a date with one another weekly. No exceptions. Continue this practice no matter what parenting option you choose and whether or not your baby lives.
Your baby may not be expected to live long. Your main job will be to parent your child for as long as life remains. Your older children may have input on how they'd like their brother or sister parented.
The doctors and nurses tried to convince us to put Joey into a hospice--to not take him home but to visit him there. My husband thought maybe that was best for the other kids although I wanted to take Joey home. Our 15 year old daughter Nora said, "You have to take him home. He's our brother and he needs us. We need to know him." So my husband said, "Let's go get him." (Erin, mom of Joey who was born with Trisomy 18)
However, your baby may not have an immediately fatal condition. Your child may live for months, years, or maybe a life time. Later chapters in this booklet will discuss long range parenting. However, not everyone feels emotionally, physically, or spiritually qualified to parent a child with disabilities. Before your baby is born, you may want to explore alternate parenting choices.
Respite care means having others care for your child part of the day, either in your house or elsewhere. Check with community agencies regarding respite care.
Use temporary foster care if you are trying to decide whether or not to place your child for adoption or choose institutional care. Your government office can refer you to foster care services.
Parents have many reactions to adoption.
I could never give up my child. You are not giving up your child. You are making an adoption plan for a child whom you feel you cannot raise.
We conceived our child so it's our job to parent. Maybe and maybe not. Maybe you conceived this child so that someone else could parent.
Why would God have given us this baby if not to raise? We learn many things from our pregnancies and from all our experiences. There may be other reasons that God gave you this child.
I would always wonder what happened to our child. You can make an open adoption plan, keep in touch with the adoptive family, and know.
We have a little adopted daughter Hope who has Down syndrome just like our birth daughter Tess. Her birth mom's first reaction was, "I have to have an abortion," and she didn't really want to. Someone told her, "You don't have to have an abortion. Let me point you in the direction of adoption." Adoption is a greater option than we ever thought. We include Hope's birthparents in our lives. We were in contact the first year and we asked if her birth parents wanted to participate in Hope's first birthday. We went to their home town, and they invited friends and family, all who had given the birthmom a baby shower with gifts for the adoptive family. They were able to bring closure to their own grief. We are making plans for her second birthday and will have those folks attend also. The birthmother is now married. She and I had built a rapport with one another because no other two human beings are linked like we are because of this baby. The Lord has put it on our hearts to be as open as we are. (Nina, mom of Tess and Hope, both of whom were born with Down syndrome)
What would others say if we made an adoption plan? What does it matter? No matter what our choices, someone is going to disagree.
What would I say to others who ask about our baby? How about, "Our baby is happy with his (her) adoptive family and we are delighted he (she) is there, too."
How could I answer the question "How could you do such a thing?" How about, "Every parent does what is best for their child. This was best for ours."
How would I handle the guilt that someone else is willing to parent my child but I'm not? By not taking on any guilt. Everyone one has different abilities and talents. You are to be commended for admitting that you are not emotionally and/or and physically capable of caring for your baby. Adoption puts the baby first. You deserve our praise.
What will I say to our other children? How about the truth? Explain in terms your other children will understand why you made an adoption plan for their brother or sister. Assure them that this plan applied to this baby because it was best for him or her. Their staying with mom and dad is best for them.
What will I say if someone asks how many children we have? Say ____ with us and ____ being parented by others. Thanks for asking. How about you?
How will I deal with what others may think of us? Try not to second guess folks. For every person who thinks negatively of you, more will think positively. No one can please everyone. When you make a decision that is right for you and your child, you have nothing to justify and every reason to be proud.
Many families wish to adopt children with special needs. Agencies which specialize in special needs adoptions can put you in touch with adoptive parents. Talk to some of these families. You may understand better how they differ from yourself in parenting style. You can imagine how such parents will be a good choice for your child.
We visited 3 orphanages in 3 different towns (in Europe) to take pictures and get information about other children with disabilities and medical problems for our adoption agency. We visited a little girl who also has spina bifida. She was doing great and was up walking and talking. (The adoption agency) was able, later, to find a family for her and she is now in Oklahoma! We also visited the very large and well funded orphanage for young children. Sandy (from our adoption agency) had sent me a picture of a little girl there (18 months at the time) who didn't look very good. Her eyes gazed off in the picture and her head was huge and funny shaped. We had just a funny feeling about her. She also was diagnosed with spina bifida. Before getting to see her, we spent time with other children, one with Down syndrome, one who is blind and a few others - all are now in the U.S.! (Katie, mom of Karlee Rose, Benal and Nikki, all of whom were born with spina bifida)
Consult local agencies and private lawyers that handle adoption. Discern whether private adoption with an attorney or adoption via a certified adoption agency will work better for you. Adoption agencies provide counseling for birth and adoptive parents while lawyers generally do not, but a lawyer may be more willing to design a unique, tailor made adoption plan that will work for you. According to Dr. Byron C. Calhoun, MD, NATHHAN/CHASK (one agency that works for the adoption of hard to place infants and children) has "over 300 families in the United States who will adopt a child no matter what the problem or life expectancy." (letter from Dr. Byron Calhoun to Mrs. Kathleen M. Morgan, 15 March 2005)
Jonathan was followed a year later by our daughter Madeleine. Then by Jesse, Daniel and Justin, three baby boys with Down syndrome we adopted. When people express surprise that with our large family we would take on more with special needs, I tell them, "When we found out what a treasure we had in Jonny, we decided we wanted more." (Barbara, mom of Jonathan, Jesse, Daniel, and Justin, who were born with Down syndrome)
Sometimes someone you know will volunteer to parent or adopt your child. If you would never consider this, gently let the person know, being sure to thank them. If you would consider it, work with the potential adoptive parent and an adoption agency which will provide legal guidelines and counseling.
If you do consider adoption for your child, think through the following questions before your baby is born:
Do you want to hold and get to know your baby?
Do you want to breastfeed?
Do you want a voice in selecting the adoptive parents?
How much contact do you want with the adoptive parents after the adoption is finalized?
Do you want to take the baby home from the hospital?
If you don't take the baby home, where does he or she go until being adopted?
What will temporary foster care be like for your child?
What can be done to have your baby go from the hospital directly to the adoptive family?
At one time, institutional care was the norm for children born with certain difficulties. Today it is still an option.
Many fine homes for children with difficulties exist. Many of these are managed by religious groups. Visit some homes and see how the children are cared for. Learn how you can be part of the team that cares for your child. Feel comfortable with the home before selecting it. Not every institution is equal in the services and love it provides.
Some parents parent the child at first and choose institutional care later. The reasons for choosing institutional care are many. Some are:
· The parents are getting too old.
· The child is getting too large.
· The child's needs are increasingly difficult to manage.
· Parents feel they are unable to parent their other children well.
· Parents want the child in a safe setting as parents face their own demise and deaths.
Others may ask many of the same questions asked of adoptive parents. Refer to the above section on adoption on some ways to answer these.
You may wish to have someone else temporarily parent your child as a legal guardian while you finalize a parenting plan. A lawyer can advise.
Be at peace with your parenting decision. If you keep changing your mind, wait. Temporary foster care ore guardianship, or parenting your child yourself while you discern, can buy you time. Only when you feel comfortable with a choice for two to three months ought you act on it.
No matter what you decide, someone is going to disagree. Accept that this will happen and ignore it. Your decision will be right for you. Be at peace about it.
If you decide on an alternate parenting option, writing a letter to family, friends, and coworkers can help explain your choice and give others an idea of how to respond. The adoption agency or institution can assist you in composing such a letter.
A sample letter might read:
We cherish your love and support. Therefore we'd like to share with you our parenting plan for little (baby's name) who was recently born with (name of disability). After much discussion, counseling, and honest soul searching, we have realized that we did the best we could in bringing (baby's name) to birth. Now we want to do the best for him (her) for the rest of his (her) life. Realizing our own limits, we've lovingly chosen (an adoptive family, name of institution, or whatever plan was chosen) to parent (baby's name). We are delighted that he (she) will have the care that we just would not be able to provide.
You may wonder if you ought to mention our baby around us. Yes, of course! We love (baby's name) and he (she) will always be ours. Please wish us well and (baby's name), too.
We appreciate your accepting our choice and allowing us our privacy regarding the details.
Thanks for understanding.
You will experience some sense of grief when you choose an alternate parenting plan. The grief comes from several sources--you will miss your child; you may feel guilty for not parenting yourself; you may grieve the child you wanted to bear. You may also grieve for a changed notion of yourself as parent. Talk over your feelings with someone you can trust.
Don't allow Mothers' Day and Fathers' Day to be difficult. You made the best choice for your child. Celebrate these days in some way. Other holidays such as Christmas, Easter, Passover, Hanukkah can also be difficult. Send your child a gift on those days or, if you made a closed adoption plan, send a gift in your child's memory to a shelter or children's hospital.
 Simons, Robin. After the Tears: Parents talk about raising a child with a diffability. Denver, Colorado: The Children's Museum of Denver, Inc., 1985, p. 28.
CHAPTER FIVE: Sharing the News
"It is only possible to live happily ever after on a day-to- day basis." --Margaret Bonnano
Today my little baby sister Gianna was born. She was a month early and sufferered from trisomonial disorders. I went to the hospital today and saw her...she was alive and breathing and struggling to hold on to that gift most precious to each and everyone of us - the gift of life. Her little chest moved up and down and her little face had the expression that she was fighting as hard as she could in a noble battle.
She died today. My little sister left this world to move on to a better one. An innocent, fragile lovable human being; her struggles are over and she rests now in happiness and peace with God in Heaven.
How often do we take our lives for granted? We get so wrapped up in our own disappointments and failures, but we fail to realize that we have the greatest thing going for us. We are alive and can make anything out of the life before us. Each breath we take is a gift - life is short and while we have it we should do something good with it. My little sister had but a few hours, but she lived it out to the fullest.
Patrick Nagurny, age 18, brother of Gianna, born with Trisomy 13
You may not yet have told others about your baby's difficulties. You may wonder who to tell and how to do it. Begin with those closest to you, your other children.
TELLING YOUR CHILDREN
The first child to tell is the one in your womb. Your unborn child may not understand your words but he will sense your emotions. Talking to your baby also helps you to work through your feelings.
We learned much about anencephaly, but we still feared for both of our unborn children. We experienced sadness, grief, helplessness, but also happiness and hope. I tried to be honest to myself and to my unborn daughters. I spoke to them and tried to prepare myself and my daughters for what was going to happen. I told Anna I was very happy with her and very sad she could not stay with us. I told my daughters to enjoy each-other's company as long as they were together, because they had to say goodbye after birth, or maybe before birth. I told Tess to be strong and brave and that it would be difficult for her, too. I tried to teach my unborn children the colors, sounds and music through my own senses, while Anna was still alive. I needed to do this, because I was certain Anna would never enter the world she was supposed to be born in. (Tineke, mom of twins Anna, who was born with anencephaly, and Tess)
It's important to tell your other children the news about their sibling before they hear it from others who can color it in ways you do not like. Explain your baby's problems as best you can. Explain how these will effect the family. You do not need to tell every detail to your other children, but all you tell them should be true.
We decided to help Nathan and Sarah get to know her and be ready for what would happen. We encouraged them to lean over mommy’s tummy and say, “Hello, Abigail!” and “Wake up, Abigail!” At first, it was a very forced, false cheerfulness that we had with the kids. It was so painful to talk to her ourselves and to have them do it. But, over time, it became natural, and we started thinking of her as baby Abigail who we loved, not as baby Abigail who has Trisomy 18. The kids started hugging her and telling her “goodbye” when I left for work, and soon it just made me joyful and happy to see their love and to think of her, not painful like before. We told Nathan that Abigail was sick and might not live, and so at first whenever we talked about Abigail, he would ask, “but what about ‘might not live’?” One day, he asked, “if she dies, will we have another baby in a few months?” He also asked how long will she live? And one time he said, “Maybe she’ll be well for one day.” Sometimes it made me cry to answer his innocent questions and to think that he had to be asking those questions at his age. But he handled it very well, knowing that Abigail would be going to heaven to be with Jesus and that someday “he’d be old enough to go be with Jesus, too.” (Mindy, mom of Abigail who was born with Trisomy 18)
Older children who know something about abortion may wonder why you are continuing the pregnancy. Appendix F contains a parable called "Melody Fruit" which can initiate discussion.
Oh God, what do we do? There is not just me and the baby to consider but our other kids, too. How can I ask them to watch me for the next 5 months getting bigger and knowing that this baby was going to die? That is not fair to them and how could they cope? Could they cope with either choice? How could I "terminate" this baby and tell them? They would never understand. If I lied to them and just told them the baby died, how can I lie to them? My head was spinning. We had to tell the kids. It was only fair. We told them that the baby was sick and was going to die. We didn't know when and there was nothing that anyone could do. We did not tell them what was wrong with the baby as I felt that they may not be able to handle that right now. Abby immediately became upset and started crying. Joe avoided everything by asking the little boys if they wanted to play. Jake and Pete didn't understand what was going on. I knew they would need a lot of support, whatever happened. I tried to find out as much as I could about anencephaly and to find other people that had been through this but was unable to because of my inexperience with the internet. The genetic counselor was not much help. I wanted pictures to get myself and family ready. I could only find one pencil drawing which was helpful to show the kids but didn't meet my needs. Jake looked at the picture and said that he knew why the baby was going to die, because it didn't have a brain and you had to have a brain to live. He also struggled with why we would want to name this baby because if you don't have a brain you wouldn't know anyway. I explained that everyone needed a brain and when our baby got to heaven he/she would get one from God and so really would need a name. This worked for him! I would hear Joe crying to himself at night. He was very worried about something happening to me and needed reassurance. His grades began to slip and he became angry. We got very concerned when he lost all competitive drive with his sports and didn't seem to care anymore. We took him to a counselor and we talked. That finally helped. Pete accepted what was going on and one day climbed up on me and speaking to my stomach said, "Hello, little baby that is going to grow up in heaven." How beautiful! Abby also talked about her feelings to her friends and teachers and to us and she grieved normally.(Sue, mom of Lucas Adam who was born with anencephaly)
Not all grandparents, aunts, uncles, and other relatives can initially accept a child with difficulties. Unsupportive relatives can create a great deal of stress. You, as parents, may have to assert your right to see things differently than your parents or other relatives do. You are mature enough to make your own decisions and this is your baby, not theirs.
After I told one relative about the baby's condition, I could not believe the response...Well, you are over 40!" As if Gianna's condition was a result of a risk I had taken! And then, "Iit would be best to have this baby out of your body as soon as possible." I am at risk for pre-term labor and normally am required to drastically limit my activities. I was shocked that this relative would suggest that I encourage labor. This was the only time I had with my child! But then I realized that this relative was concerned about me and did not want me to suffer. (Doreen, mom of Gianna who was born with Trisomy 13 and holoprosencephaly)
Educate your relatives and try to be patient with them as they come to accept this new family member. Be totally honest and truthful. That way you show that you have nothing to hide or be ashamed of, you will not have to admit to untruths later, and you will open yourself up to finding support. If you feel that someone cannot respond charitably and calmly to certain details, don't share them. If asked, change the subject or simply say, "To us, that is a private matter."
Some comments border on accusation. You may hear, How can you bring that poor child to birth? Children shouldn't be brought into this world to suffer. How can you justify the cost? What's this going to do to your family (marriage, other kids, spouse)? You can't even handle things now. How are you going to handle this? What are you doing to yourself? Have you talked to the right people about this? I know what we would do if we were in this situation. I've seen babies with this condition and they're not pretty.
Don't argue. Folks who make comment like this do not want dialog. Take control by responding, "Thank you for your concern." If you are a religious person, you might add, "We're letting God be in charge." Then change the subject. The unsupportive person will soon get the hint that you are not going to justify or debate your decision.
Dealing with people who don't know about your baby's condition is sometimes easier than dealing with those who do know. If you don't want to divulge details, briefly reply to strangers' comments.
"How are you feeling?" "Fine."
"When is the baby due?" Tell them your due date.
"Is it a boy or a girl?" If you know, tell them.
"I bet you're excited." "We sure are."
People want to make things better. They may say things like "God gives special kids to special families" or "an angel touched your child" or "God wants to bring blessings to you and so He gave you this child." Some folks say, "It could have been worse" or "Well, at least you never have to worry about him or her _______________(fill in the blank with something negative that your child probably will never be able to do)" or "These children are always __________ (fill in the blank with a positive adjective like happy, sinless, good)." These well meaning comments may hurt or irritate you. A simple response of "Thanks. I appreciate your caring," acknowledges the comment maker's good will.
Emily acted like she could not hear, even with loud noises and screaming right by her head. When she had a hearing test done after the placement of her shunt, it came back that she had normal hearing but a delay in processing it in her brain. In the last 3 months, her hearing reaction has improved drastically. I have been told by friends, they don't know how I can handle it all with calmness; they would be going crazy. I look at Emily as a blessing not a burden or hardship. You just have to take things one at a time. (Sabra, mom of Emily who was born with enlarged ventricles in her brain)
People may say the wrong thing.
I knew that when I could bring my baby home, everything would be alright! I remember feeling upset that everyone was saying they were "SORRY"! Here I had just had a beautiful baby and all everyone could do was feel sad for us! I wanted to hear "CONGRATULATIONS" and all I got were condolences. A baby is a miracle! (Susan, mom of Victoria Ann who was born with spina bifida)
Work to forgive those who hurt with their words.
Sometimes the nurses didn't know our diagnosis and would make cheery inappropriate comments. Others just wanted to get away from me as if I had a disease they could catch. Accepting and trusting God was not quite enough. There was a choice in accepting with grace or accepting in anger and feeling sorry for myself. I chose to carry in God's peace and grace. That meant accepting not only the joys of my baby but also accepting and forgiving the stupid (for the lack of a better term) comments of those who were well meaning, those that didn't know our diagnosis, and those who didn't agree with my carrying a child who would die. I actually had comments of "no brain, not human". I was congratulated by many strangers who didn't know how my heart wept at their words. Others seeing me with my 4 kids said, "Not another one! How are you going to manage another one?" Oh, please God, I wish! (Sue, mom of Lucas Adam who was born with anencephaly)
You may also be praised beyond measure.
I have been called a saint for carrying Luke. I have been told by many that they couldn't do what I did. I am not a saint, and you don't know what you can do until you are faced with it. While I carried Luke, God carried me. That is what made the difference. It was not my strength but God's and that strength is available to anyone who asks. The secret is in the asking. (Sue, mom of Lucas Adam who was born with anencephaly)
PEOPLE FIRST LANGUAGE
People First language refers to what a person has, not what a person is. Use this language in talking about your child. (This is the language used in talking about the children in this book). People First Language separates the person from the condition. A person is not a condition.
Here are some examples of People First language:
"My child has annencephaly" rather than "My child is annecephalic."
"My child has Down syndrome" rather than "My child is Downs."
"My child uses a wheel chair" rather than "My child is disabled."
"My child has a handicap" rather than "My child is handicapped."
A good way to begin seeing your child in a new light is by journaling all her achievements. Begin today and, in time, your child's mission will become apparent.
God has created me to do Him some definite service. He has committed some work to me, which He has not committed to another. I have my mission. I may never know it in this life, but I shall be told it in the next. I am a link in a chain, a bond of connection between persons. He has not created me for naught. I shall do good; I shall do His work. I shall be an angel of peace, a preacher of truth in my own place, while not intending it if I do but keep His commandments. Therefore, I will trust Him, whatever I am; I can never be thrown away. If I am in sickness, my sickness may serve Him, in perplexity, my perplexity may serve Him. If I am in sorrow, my sorrow may serve Him. He does nothing in vain. He knows what He is about. He may take away my friends. He may throw me among strangers. He may make me feel desolate, make my spirits sink, hide my future from me. Still, He knows what He is about. (My Mission in Life, by John Henry Cardinal Newman)
You need a support system! Social workers, clergy, doctors, friends, psychologists, and psychiatrists can be helpful. Agencies provide information and assistance. Research these via the internet or consult some of the agencies listed in Appendix B of this booklet.
When things seem so hopeless, don't give up. There is help out there to assist you in keeping your baby. Lean on others for support. (Shellie, mom of Dylan who was born with hydrocephalus)
Through the internet, and sometimes through referral from others, you can find families who are awaiting birth or who have given birth to children whose condition is similar to that of your child. These families can be a tremendous support.
It's a miracle that God let Maria and I find each other, that our babies have the same condition and the same due date. She knows exactly what I am feeling and I know exactly what she is feeling. (Rosa, mom of Arianna who was born with anencephaly)
Brad and I found out at 16 weeks that our baby had spina bifida. We were devastated. The doctors and counselors gave us the worst case scenario and pretty much scared us to death. They told us we had two weeks to make a decision; do we terminate the pregnancy or go on knowing that our baby would be born handicapped. So the work began. We read everything we could get our hands on; we visited a neurosurgeon and pediatrician. We contacted the Indiana Spina Bifida Association for information. We visited a family who has a daughter with spina bifida. We prayed and cried and talked and prayed. Finally, just a couple days short of our 'deadline,' we had dinner with a high school friend of Brad's who is paralyzed and uses a wheelchair. His was an industrial accident, but we wanted to get his perspective. We asked him how he feels about his life now. He's a wheelchair marathon champion. He's happy and healthy and productive. Seeing life from his view, we chose to bring Karlee Rose into the world. (Katie, mom of Karlee Rose, Benal, and Nikki, all of whom were born with spina bifida)
I went to the internet and found SOFT (Support for Families with Trisomy). I did manage to find some mothers who had live births. Most brought their kids home to bury them within a short time. They were women of all faiths and they were glad they had brought their kids home. They had a lot of technical support to do that. I even talked to one woman whose child lived to age thirteen. Everyone was negative other than those people whom I contacted through SOFT. I felt like I was on another planet. However, you do what you have to do. I tried not to let the negativity get me down. (Emily, mom of Andrew, who was born with Trisomy 13)
Search, too, for adults who have grown up with the same condition as your child. Their insights can be particularly helpful.
I have Down syndrome. I am very smart and very bright. A Down syndrome baby is very smart, they can walk, talk, and have many learning skills. As a Down syndrome adult I am able to learn many new things and develop many new skills. It seems as though people do not understand that. People must understand that the Down syndrome adult has much talent and they are able to learn and grow as anybody else can learn and grow. The Down syndrome person can learn so much in life. They have special teachers who help them. We are able to read newspapers, work on computers and like myself write poetry and stories. The Down syndrome person has much talent and uses that talent to learn and do many new things. (Bob, an adult who was born with Down syndrome)
Confide in your employer. You may find much support in the work environment.
I work with a wonderful group of people who were there for me every single day. I could be myself with them and they accepted me and my baby unconditionally. My bosses were supportive beyond words. I am forever grateful for these wonderful caring people and owe them my sanity and my everlasting gratitude. (Sue, mom of Lucas Adam who was born with anencephaly)
If you need financial services, ask doctors, state agencies, and social workers to guide you.
GETTING THE NEWS DOWN INTO WRITING
Send out an email or a form letter to family and friends to let them know your baby's condition. Try to anticipate and answer all their questions. Let them know your plans and how you wish them to respond to you. Some folks will respond positively. Others may feel that you need to be alone or else are not sure what to say and won't respond.
I had let the school and my kids' friend's parents know. The kids were going to need all the support they could get. I also am very active in the school and all the kids know me and would be struggling to understand. Everyone pitched in to help my kids. There were many group hugs. I had many kids come up to me with questions and comments. How wonderful kids are in their innocence! I remember one little girl who in a very serious voice said, "Mrs Jorgenson, I am very sorry about that dead baby inside your tummy." Then she skipped off before I could answer. How much better than some adults that just plain avoided me! (Sue, mom of Lucas Adam who was born with anencephaly)
Once you understand the baby’s condition better, you may want to send a letter or email with ways that your family and friends can help you prepare for the baby’s birth. Often, people don’t know what to do in a situation like this, and they appreciate knowing how they can help. You can ask people to help you by:
· Finding other informational resources on the baby’s condition for you
· Watching your other children (if any) so you can make phone calls or go to appointments
· Making phone calls for you, or going to medical appointments with you
· Helping out financially or organizing a fundraiser for you if you will be traveling or need to cover certain costs
· House/pet sitting if you are going to travel
· Cleaning your house
· Making prepared dinners for you prior to, or after the baby’s arrival
· Organizing a blood drive - either for the general pool, or for a directed blood donation for your baby (ask your physician about directed blood donations.)
· Adding you and the baby to prayer lists
· Throwing a baby shower for you, if you would like. Some parents decide that they prefer to wait until the baby is home and then have a baby shower/welcome home party. Others want to proceed as normal and have a baby shower while pregnant. Make sure that you make your wishes known to family and friends, whatever you decide.
· Beginning a “Random Act of Kindness” campaign in the baby’s name. Asking people to do a nice thing for someone else while waiting for the baby can help create special meaning and purpose to the baby’s life before he or she even arrives. Ask family and friends to send you a note of their Act of Kindness, so you can keep a record of the positive impact your baby has had on the world.
By clearly communicating your needs and expectations to family members and friends, you can eliminate misunderstandings, and receive the support and help you need during this very difficult time. (Debbie Hilton Kamm, Mother of Braedon who was born with Hypoplastic Left Heart Syndrome. Debbie is creator of the HLHS Information website [www.HLHSinfo.org] and co-founder of California Heart Connection [www.caheartconnection.org], a nonprofit support network for those with heart defects. Revised April 26, 2005)
CHAPTER SIX: Birth and Death Plans
The fear of death keeps us from living, not from dying. -- Paul C. Roud
My sweet baby Gianna
When others do not know you or forget you
FOREVER I will remember you
FOREVER I will love you
FOREVER my heart will ache for you
FOREVER I will hear the loud steady beats of your heart
FOREVER I will feel your strong kicks inside of me
My other children will grow and move on to the places that life takes them
FOREVER you will reside within me
FOREVER I will remember the moment you were born, the moment you began to die
FOREVER I will recall your sweet scent, your light breath
FOREVER I will long to hold you in my arms and
Trace my finger along your lips and ears
FOREVER I will feel the softness of your hair, your skin
You have transformed me
FOREVER I will pray to you
Until we meet again in HEAVEN
FOREVER I will thank God for giving me the greatest gift
FOREVER I will know His LOVE, His JOY, His HOPE
Sweet Baby Gianna
I will love you FOREVER
Doreen M. Nagurny (mom of Gianna who was born with Trisomy 13) 4/22/05
If you have received the news that your baby has a fatal condition, you are trying to adjust to your baby's birth and death. Your time with your baby is very limited. The time to love and nurture your baby is now. There may not be too much other time.
I knew as soon as she came out of my body the clock started to tick. Time was running out. I was prepared for a very short life for Grace. I even thought that maybe her time inside me was all I would get. I cherished every kick and move she made. (Christine, mom of Grace Ann who was born with Trisomy 18)
WHERE IS GOD?
As the parent of a dying child, you may question God. What is God doing? Here is a poem that may help.
My Life is but a weaving
Between my God and me;
I may not choose the colors,
He knows what they should be
For He can view the rainbow
Upon the upper side,
While I can see it only
On this, the under side.
Sometimes He weaves sorrow,
Which seems strange to me;
But I will trust His judgment,
And work on faithfully;
At last, when life is ended,
With Him I shall abide,
then I may view the rainbow
Upon the upper side;
Then I shall know the reason
Why pain with joy entwined,
Was woven in the fabric
Of life that God designed.
Parents with faith generally resolve their questions about God, but it may take time.
First, God is in control. Medical technology revealed Abigail's genetic defect, but no medical technology could fix it. No expert could tell us how severe her problems would be. No doctor could tell us whether she would be still born. Only God knew when she would come into the world and how many days she would have. Although He didn't tell us how long it would be, He did speak to us. Through His word, He assured us that He would be with us. He would listen to our prayers. He cares. None of us knows the number of days He has given each of us. After a short time we could all be together again forever. And so in a time of grief and sorrow, we found comfort and peace and even joy. (Steve, father of Abigail who was born with Trisomy 18)
You may be fortunate enough to have access to a perinatal hospice. Perinatal hospice will support you from the time of your baby's diagnosis through the pregnancy, birth, and death of your child and into the post partum period. Your local hospital or hospice will be able to tell you if a perinatal hospice is available.
I contacted Mary, the Assistant Vice President of Counseling Services and Director of the Perinatal and Pediatric Programs for Hospice Care Network. She had recently helped another mom when she was pregnant with a baby with a fatal condition. Mary helped us create a birthplan so that our wishes would be honored. Because of Mary's help, Walter and I began to feel a sense of control. We gained the courage and strength to advocate on behalf of our unborn child. Mary acted as a liaison between my doctor and me and also communicated with personnel at the hospital where I would be delivering. She provided bereavement support to my children on a weekly basis. Mary had also put me in contact with the other mom whom she recently helped. (Donna, mom of Jonathan who was born with Potter's Syndrome)
We really didn't need a lot of nursing care - we were the nurses. We did have a volunteer come in once a week - so I could spend time alone with my 2 other girls. If anyone brings a baby like this home, Hospice is the way to go. They were great. (Christine, mom of Grace Ann who was born with Trisomy 18)
If you do not have a perinatal hospice nearby, you can work with your physician and hospital staff to create a plan that works best for you.
By creating a birth plan, you are able to control certain aspects of your delivery. Most medical personnel are grateful for birth plans. Decades ago, dead or dying babies were whisked away in the mistaken idea that keeping the parents from seeing them spared the parents unnecessary anguish. Birth plans help the medical staff know just how you want you and your child to be treated.
Your initial consideration will be: Do you want comfort care or aggressive management for your child? Discuss both options with your doctor, and be sure that both you and the doctor understand the terms in the same way.
Two terms are bandied about: "Aggressive Management" (or "heroics"), and "Comfort Care". Parents need to discover what those terms mean to the medical personnel and the facility they choose. To one doctor, "comfort care" will consist of wrapping the child in a blanket and handing him to the parents. To another, comfort care includes feeding tubes, oxygen, and medicine to treat infections or other conditions. One doctor may consider "aggressive management" to be any help at all to a potentially terminal infant; another may consider it to be only life support and other extreme measures. We wanted a middle road. We wanted Sidney to have care, but not to be forced to live. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
Once you determine a treatment option, you will want to focus on other details of the birth. Devise a plan that will work for you, your family, and your baby.
Do you want . . .
To have a private room?
To take photos?
To videotape the birth and the baby?
To have your children or others present at the birth?
To have visitors after the baby is born?
To breastfeed or express breastmilk for your baby?
To have a naming ceremony?
To have a member of the clergy present?
To bathe your baby?
To have your baby with you all the time?
To have your partner sleep in the room with you and the baby?
To have footprints, handprints of your baby?
To have molds of the baby's feet and hands?
To keep mementos such as the baby's blanket, cap, lock of hair, clothes the baby wore?
Record your wishes in the birth plan.
Share the birth plan with your physician and, when he or she agrees to it, have the final birth plan signed and notarized. Ask your physician if you ought to share the plan with the hospital staff in advance or ought you bring copies to the hospital when you are in labor. It's critical that everyone involved in the delivery know and agree with your birth plan.
I made a birth plan. We wanted no heroics. We wanted our child to die naturally and without pain and to be respected as the human being he/she was. I met with the director of nursing so the hospital would honor my requests. It was no problem I was told. We wanted the kids to be as involved as they could be. We already had a girl's name picked out--Janet Ruth, after my grandmother and Doran's mother. Joe and Abby picked the boy's name. Joe liked Luke and Abby liked Adam so it became Lucas Adam. (Sue, mom of Lucas Adam who was born with anencephaly)
A lot of resources were pulled together to create the birth plan: internet, Fetal Treatment Center, palliative care specialists. We were blazing new territory at our hospital; usually this type of situation is transferred to a larger hospital that sees this more frequently. Some of the things we wanted were out of the ordinary and required us to make arrangements ahead of time. So we had to meet with the neonatologists and the pediatrician that would be handling Abigail’s palliative care. (Mindy, mom of Abigail who was born with Trisomy 18)
Here is an actual birthplan which was used for Jonathan's birth.
Victoria Lynn or Jonathan Steven Dobkowski
Written by parents, Donna and Walter Dobkowski,(Revised April 13, 2003)
We have known for months that our unborn baby has been diagnosed with Bilateral Renal Agenesis, also known as Potter’s Syndrome. We have made an informed decision to carry this baby to term and keep our baby as long as possible. It is our priority to have our baby born alive. Please honor our request to preserve the dignity of our baby’s life. Please respect our following decisions:
1. We would like staff to be informed and aware of the situation.
2. Donna would like an epidural during labor. If complications arise for the baby during labor, in order to maximize the chances for a live birth, then we would like the option of having a C-section. We would want to properly medicate Donna so she does not have any pain during the procedure, but at the same time, we want to ensure that Donna is alert throughout it and that Walter is by her side. We want Donna to have as best physical outcome as possible, but our primary goal is to ensure that our baby has every chance to meet us and that he/ she is protected from unnecessary pain and suffering.
3. We request that a liaison (i.e. nurse, social worker, chaplain) periodically give updates to waiting family members.
4. If the baby is a girl, we would like her referred to as Victoria. If the baby is a boy, we would like him to be referred to as Jonathan.
5. We would like the doctor to cut the cord.
6. We would like for mechanical assistance (bagging only, no intubation) to be used only temporarily to try to initiate the baby’s breathing, if necessary, immediately after birth. We do not want any extraordinary measures taken to maintain breathing or initiate a heartbeat. After this is performed and after wiping and wrapping the baby, we request that our baby be handed to Mom/Dad and that weighing the baby, labs and confirmation of the diagnosis be postponed until later.
7. Our baby will be baptized as soon as possible after cutting the cord. This will be performed by Walter. We ask that the grandparents and our three children be present at this time if possible.
8. We would like our baby to stay with us at all times.
9. Our baby should be offered comfort care: feeding, bathing, swaddling and holding by his/her parents and family.
10. We wish to be with our baby and hold our baby at the time of death.
11. When our baby dies, we want some time to be together as a family alone.
12. We would like to be alone, away from other newborns before and after our baby’s birth.
13. We do not wish an autopsy to be performed.
We would like to keep the following items as keepsakes:
1. Bassinet card
3. Baby blanket
5. Hospital ID bracelet
6. Handprints/footprints (we have plaster molds)
7. Lock of hair
8. Birth certificate
9. Death certificate
To the staff of Labor/Delivery and Neonatal Units,
We have tried our best to prepare for this short time with our beloved baby. Thank you so much for helping us and supporting us through this celebration of our baby’s short but precious and meaningful life.
Donna F. Dobkowski, mother
Walter A. Dobkowski, father
Memories begin now, before your baby is born. You may want to keep a journal. You might create a scrapbook of ultrasound photos, of pregnant mom, and of other memorabilia. Or you may wish to have a family photo taken in which mom is clearly pregnant. Such a photo will actualize your baby's existence for the future. You may want to make your baby's blanket, cap or outfit or select them from the store. If your baby has a fatal diagnosis, have two blankets and two outfits, one to bury the baby in and the other to keep.
The time immediately after the birth may be the only time you will have to collect tangible memories of your child. Mementos may help in future healing and will give siblings a sense that their brother or sister really did exist.
The hand/feet molds are adorable, priceless!! But one of her right foot had a big air bubble and only got the heel! GRRR!!! We may buy one more kit and see if the mortician will try and get it for us; even if it's not how it was at birth, we'd still like to have it. I am sooooo glad Joyann made it to fullterm!!!! We were able to see her features and distinguishing characteristics and it was wonderful! Joyann has the characteristic crooked pinky that my mom and son, Joseph, share!!! How wonderful to know this! When the nurse took Joyann's little footprints for the hospital birth certificate, not all of her little toes showed up. The head nurse tried on 3 different birth certificates until she got all ten toes to show up! On her left pinky toe, she has the same thing as my hubby--her little toe is kind of sideways! Her other toes are just like mine. My hubby and I kept our angel Joyann with us for 10 hours after she died. We held her the whole time and marveled at her unbelievable beauty. The nurses and even the lab techs wanted to see our baby and were so kind and loving to us. They gave us a little crocheted blanket for Joyann that she laid on and I sleep with; they gave us a memory box with a lock of her dark brown hair (like mine). Her hair was soft and fuzzy. She had hair behind her ears and I rubbed it. She had actually pretty mild anencephaly. The nurses took pictures of Joyann with a little ring on her finger that we got to keep and with a beaded bracelet in pink and blue that said BABY. They dressed her in a little t-shirt that was open in the front and a matching cap with a ball on the top. They put an extra set of the t-shirt and other memorabilia in a little purple memory box for us to take home. (Jewell, mom of Joyanne who was born with anencephaly)
The hospital staff may prepare mementos for you. Ask them about this.
The nurse brought back Sydney’s The Foot Book. Inside the front cover, they had made imprints of Sydney’s little feet before they had brought her back to us. They had also taken pictures and video that we didn’t know until later. (Heather, mom of Sydney Grace who was born with brittle bone disease)
How will you display photos or mementos? How will you celebrate her birthday and/or death day? Each family must decide this for themselves.
There will be no viewing of her body, because I do not wish for her to be an object of curiosity. Her picture will not be hung on our wall with our family for the same reason. We have no shame of her, but we will protect her from being degraded by others. I want to hang Sidney's photo in our bedroom. Private enough for viewing, but not public enough for the neighbor boys to ridicule her. I just cannot subject that sweet child to the cruelty of those who would despise her just for her appearance. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
My husband has a big beautiful picture of Andrew. We celebrate Andrew's birthday every year. Every year we acknowledge him. (Emily, mom of Andrew, who was born with Trisomy 13)
THE ACTUAL BIRTH
Some parents immediately bond with their babies.
All of her little things made her special to me. I didn't see Trisomy 18. I just saw my precious little girl. She wasn't the monster the doctors had painted for me -- she was just a little sweetheart. All she needed was love. Boy, did she get it! (Christine, mom of Grace Ann who was born with Trisomy 18)
Some parents take a bit longer.
When I saw Kelsey for the first time, I didn't truly feel sick, but I said to my sister, "I need to go back to my room. I'm not feeling well." I couldn't go back there. I didn't hold her for the first night. I thought what a terrible mother you are. I just couldn't handle it because it felt so, so overwhelming. She was so, so sick. I came around to being able to hold her, but it really was scary. They didn't think she would live for a day, and then two days, and then a week and then she wouldn't live for a month. And then she wouldn't live--that went on for her first 3 years. (Chylene, mom of Kelsey who was born with CMTC syndrome)
You may have time with your child. Each moment will be a blessing.
The biggest surprise was the incredible joy even with all the sorrow. Though she was so frail and near death, we cherished every moment, holding her in our arms the entire five days, afraid to sleep. Our other two children, Nathan (5) and Sarah (2), loved her without prejudice. The whole family gathered in the room for her first bath, and we laughed when she pooped on Grandma.(Steve, dad of Abigail who was born with Trisomy 18)
THE DECISION TO LET GO
Sometimes parents have to make difficult decisions for babies who are dying.
Sydney Grace was born September 17, 2000. She had the most lethal type of brittle bone disease. She had many fractures from being in the womb, some of which had already healed. I did get to hold Sydney about four hours after she was born. What a precious moment. Sydney was put on a respirator, but it was so hard to see her there. I was afraid to even touch her for fear of fracturing a bone. We made sure we did everything we could for her. We took lots of pictures (5 rolls), 2 videos, sang to her, read to her, let her see her big sister, and just let her know every moment that she was so loved. The hospital staff did everything they could. There would be no miraculous recovery. On September 22, it was obvious that she was in pain. We had not noticed this before. So, even though it broke our hearts, we made the heart-wrenching decision to have her taken off the respirator. We called our families and pastor and told them to come quickly so they could tell her good-bye. At 3:06 PM, about 30 minutes after the respirator was removed, Sydney passed away. We were allowed to stay in the room and spend as much time as we needed with her. We bathed her, dressed her, and basically just held her because we were not really able to do so while she was living. We ended up spending another five hours or so with her, although it was not really her, just her body. The hardest thing I ever had to do was hand my daughter over to the nurse, knowing I would never get to hold her on this Earth again. (Heather, mom of Sydney Grace who was born with brittle bone disease)
Your baby may die before your milk comes in. Having the milk but not the baby can be a special torture.
As painful as it was to have my milk come in, it is now just a little disappointing to have it drying up. It's like the last bit of my body's response to Sidney is going away. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
You may want to donate your breast milk to a milk bank. Appendix B lists contact information.
Making arrangements for your baby's death, before your baby is born, can be very difficult. However, it's good to make those plans when you have the time to think clearly. If your baby survives, you can always discard the plans.
Doran and I went to the funeral home to make arrangements. I did ok until we looked at little caskets. How horrible. They were so little. Some looked like coolers but there was one -- we were told that the hospital provided that same casket free if our baby died while there. Even harder was picking out the cemetery plot. We would get 2 plots and Doran and I and the baby would be buried there. As we looked at plots, my baby was kicking and moving around. I had to retreat in tears to the van. I can't think of anything more horrific than planning a funeral while still feeling this little life. (Sue, mom of Lucas Adam who was born with anencephaly)
WHEN DEATH COMES
How will you react when death comes? Try not to be afraid. Most moms and dads parent their deceased children until they feel ready to relinquish their bodies.
We were told we could have as much time as we needed with Sydney. I asked if I could give Sydney a bath and a nurse brought the necessary supplies. She also brought materials for us to make our own footprints for Sydney. At one point I realized I had not taken Sydney to see the sunshine before she died. I started crying and Brian reminded me that she was now surrounded by sunshine. He was right. I took her over to the window anyway and asked Brian to take our picture. I also decided to give her her bath there. Brian helped bathe her and then we put lotion on her. After Kelsea takes baths, I still put lotion on her and each time the scent reminds me of Sydney. We dried her off and rocked her some more. I sang to her and read to her again. We took many pictures of us holding her. I tried to memorize every little detail about her. I ran her fingers, toes, and her hair against my lips, memorizing how they felt. (Heather, mom of Sydney Grace who was born with brittle bone disease)
I do not need a doctor to know that there is no life anymore. I cry and cry, partly because I am sad but mainly because I am happy to know for certain that Anouk's soul is now with God. Christophe cries, too, and it does me good. Before washing and dressing Anouk, we take her footprints and hand prints, because it is important for me to keep as many souvenirs as possible. After that, nothing keeps us at the hospital, and our children need us at home. There is neither bitterness nor lamentation and I do not regret for one second the last months. I am glad despite my sadness because "Death has been swallowed up in victory." We gave all our love to Anouk and now we can let her go. (Monika, mom of Anouk who was born with anencephaly)
Parenting the baby even after death brings peace and comfort.
Lucas Adam lived for 45 minutes. He never moved or cried but he did have his eyes open. He had my mouth and his daddy's eyes and long toes! He was beautiful and weighed 4 lbs 10 oz. He died peacefully in his daddy's arms. I had requested that he stay with me the night. I held him and rocked, sang lullabies he would never hear, sobbed and said my goodbyes. When I was ready I laid him down and slept the best sleep I had had in a long time. In the morning I told the doctor that I was going home. I needed to be with my family. The nurse came in with the casket. I cuddled Luke warmly into the yellow afghan I had made him, snuggled him comfortably into his final bed and the nurse took him away forever. Doran and the kids came soon after to pick me up. (Sue, mom of Lucas Adam who was born with anencephaly
AFTER THE BABY DIES
Do you want . . .
To keep any stuffed toy the baby had?
To write a letter to your baby and put it in the casket?
To decorate the casket?
To send birth/death announcements?
To take photos of flowers sent to you?
To press flowers to keep?
To buy a special candle for the funeral and then keep it to light on birthdays and holidays?
To make a photo album or scrapbook?
To plant a tree or other living plant in your child's memory?
To make a donation to charity in memory of your child?
To write your baby's story?
To make a memory box in which to keep your baby's mementos?
To write a poem for your baby?
If you would like to bring your baby's body home for a time, write this into the Birth Plan.
I remember thinking, "Wait a minute, he isn't moving, he's mottled and blue-ish, and his cord is white. He is dead!" I did not really expect that; I assumed he would die before being born. I had to absorb in a moment that this precious, wanted, beautiful baby was already gone. Time seemed to stop, but it was only seconds before I called for water to welcome him into Heaven through Baptism. We love him so! I caressed him, kissed him, and mothered him. Ray helped weigh Loren, bathed him, dressed him, then we took many photos of and with our son. My brother Jim came and held our boy for over an hour. The hospital priest arrived and baptized Loren again. We brought Loren home where he spent the night with us and had the chance to meet his older siblings and my sister as well as her daughter. Before driving Loren to the funeral home to make arrangements for cremation, Ray first drove Loren all around our town and neighborhood, showing him where he would've played and lived, and saying his farewell to our son. (Ann Marie, mom of Loren who was born with anencephaly) PRIVATE "TYPE=PICT;ALT=Ray, Ann Marie and Loren"
OBITUARIES, FUNERALS, AND MEMORIAL SERVICES
Some families put an obituary for their child into the newspaper. Here is Loren's obituary.
Loren Joseph Henninger
-Stillborn but Still Born-
Our precious son Loren was born September 20th and was born again into eternal life with Jesus that same day. Welcomed tenderly into the world by his parents, Ray Loren Henninger and Ann Marie Trebon. Loved and missed by his brother, Ean, and sisters, Erin, and Kate. Thanks to family and dear friends for their love and continued support. His life has been a blessing and a miracle and he is now at peace with our Creator. Memorials may be made to the Sequim Branch of the North Olympic Library System (2210 S. Peabody Port Angeles, WA 98362) to be used for the purchase of childrens' books. (Loren was born with anencephaly)
If you hold a funeral or memorial service for your child, you may wish to compose a program for those attending. Here is an example of one family's program.
Abigail Grace Wilsford
August 27-September 1, 2002
A Celebration of her Eternal Life:
September 14, 2002
Dear Brothers and Sisters in Christ, and Family and Friends:
Thank you so much for coming here today to help us celebrate the eternal life of our daughter and sister, Abigail Grace Wilsford. While our hearts are broken at giving her up, we feel blessed to have had her in our lives. She has changed us forever, and we want to share with you both our sorrow and joy.
We also wanted to tell you a bit about Abigail's story up until this day. . . . (Steven and Mindy, parents of Abigail Grace, born with Trisomy 18)
Here are excerpts from a funeral bulletin which also requested charitable donations in lieu of flowers:
To all of our family and friends:
We want to thank each of you for your unending prayers, support and compassion you have given us during this difficult time. We could not have gotten through this on our own. We have learned a lot along the way, especially God’s presence in our lives. We feel truly blessed to have our three beautiful healthy children and we feel Jonathan Steven will now be our guardian angel. We thank God for each of you and pray that God will bless you all.
A special thank you to Sister Pat; without her guidance and support, we would not have been able to endure the daily struggles.
Another special thank you to Mary Gravina from Hospice. She has taught us how to deal gracefully with difficult issues with our children in an open and honest manner.
Donations can be made in the name of Jonathan Steven Dobkowski to:
Hospice Care Network
14 Shore Lane
Bay Shore, NY 11706
c/o Mary Gravina
God bless you,
Donna and Walter Dobkowski (from the funeral bulletin for Jonathan Dobkowski who was born with Potter's Syndrome)
Some families have a public, social gathering after the funeral or memorial service.
We spent the week after Loren's death planning a funeral liturgy. We chose the reading, readers, prayers of the faithful, music, and poetry we would read. This celebration of Loren's life was held in our church, with a potluck luncheon following at our home. (Ann Marie, mom of Loren who was born with anencephaly
Some families do not want a large, public service. .
We have decided not to have a funeral. Those who did know her are grieving her loss, and in no condition to speak, and a public event is not something I can bear now. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
We buried Luke on a bright sunny day. We had a family only graveside service. The kids let off balloons to go to heaven for Luke. They had a great time competing to see whose would get there first! Then it was done, except it still isn't a year later. Luke left us for another place, but he is still with us. He brought us so much. (Sue, mom of Lucas Adam who was born with anencephaly)
The strength of your grief may startle you. You grieve because you love. You grieve not only the immediate loss of your child but also your future with him or her.
Today I miss her very much. The other kids help, but do not replace that intense need which a newborn would have. That is the difference in grieving between a mother and a father. The mother is constantly aware of the presence of the baby, the father is not. He notices and pays attention when the baby requires attention. When an infant dies, the mother is constantly aware of the baby's absence, as though a part of herself were missing. The father may be affected by the loss only when he thinks about it. The loss is different to each. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
You may experience any or all of these reactions:
· Preoccupation with thoughts of the baby.
· Heightened impatience, frustration, lack of direction, indecisiveness, fear, despair, worry, yearning for comfort, anger, carelessness, numbness, guilt, resentment toward others.
· Physical problems such as difficulty breathing, sleeplessness, fatigue, depression, spontaneous crying, empty feeling, appetite changes, tightness in the throat, racing heartbeat.
· Obsessions with cleaning, health, well being of other children or spouse, work, cleanliness, food, exercise, harmful substances such as drugs or alcohol.
You can have these reactions if your baby is still born or if he lives for a while and then dies.
Surviving the loss of my Karlee Rose (Note: at the age of two years) has been the most difficult time of my life. It's just plain hard work. And it never goes away. The pain (excruciating) is always there. Time does make that pain not come to the surface as often. Brad and I cried, and prayed and talked (just like when we found out about her birth defect) and cried. I read tons of books on the loss of a child. I found an internet web ring called "Empty Arms" and read, and read, and read. It helped to know I was not the only one to lose a child. I joined an internet support group, and Brad and I went to grief counseling. The 'firsts' were so very difficult -- first time back to church (ouch!), first time to the hairdresser, dentist, grocery store (another ouch), back to school. (Katie, mom of Karlee Rose, Benal, and Nikki, all of whom were born with spina bifida)
The persistence of grief may surprise you. At unexpected moments, memories may spring up and tears flow. One mother compared her seven year grief journey to a roller coaster ride. You never know where the peaks, dips, and curves are, but you know that they exist, that they will suddenly be upon you, and that you will hang on for dear life when you encounter them. You also know you'll survive the ride and, at some point, climb off. Let the tears flow as often and as intensely as they come. Do not fight grief, but let it carry you along like a wave until its power abates. There is healing in the tears.
At times my arms ached so much I couldn't use them. I thought I was losing my mind and my faith. The pain of mourning, the loss of a child, I don't think can be compared. We know that truth is absolute, because God is truth. We must be made into His image not He into ours. To follow the same path that He walked. What immeasurable glory, that He would raise my human dignity to follow His path of suffering and so to be made into His likeness. What similarities to Our Lady's suffering! I glimpse the extent of her love for God and for us. (Jeanne, mom of Maria G. who was born with Trisomy 18)
Certain dates and anniversaries can be especially difficult. Make plans for those dates. Invite friends over or decide to do something special. You may wish to share this essay with others.
My baby died. It is the most tragic thing that has happened in my life. I know it makes you uncomfortable. I know you want to help. Please try, but do not try to fix me.
Share your faith with me. It helps mine be stronger, but do not try to tell me how I should feel if I really believe. Believing, even knowing, does not remove grief.
Do not tell me there is hope in Jesus and expect it to take away the pain. I know the doctrine - it offers me great comfort and it helps me endure, but does not replace the presence of my beloved child.
Do not tell me that I will see my child again as though I have forgotten in my grief. I know that, but it does not make me miss her less now or take away the loneliness.
Do not belittle the short time she had as though she had no power to touch others. Her life has greater meaning than those minutes and her mission reached beyond her own life.
Do not tell me she was perfect as though the honor of having a perfect child should compensate for her absence. I know she was perfect, I felt her.
Do not try to comfort me by telling me it would have been hard to care for her with the problems she had. I loved and wanted her anyway and I was willing to face any hardship for her.
And please do not tell me she is happier now as though I should be glad to let her go. It is the absence of her joyful spirit that leaves such a void now.
It is the motive behind your words that makes them appropriate or not. I can feel when you love me, or when you are trying to educate me out of my loss.
Please do not ignore my loss and avoid me. Please have the courage to ask me how I am, even if you fear my tears. You don't have to know what to say, I will understand. I just want to know you care.
Please tell me you are sorry, or that you would like to take it away my pain if you could.
Tell me you love me and would have liked to know my child. It may cause me pain if you mention her name but I need you to do so, because it will also offer me the comfort that someone other than just me remembers her, and I need to know that. Fumbling words from a sincere heart mean more to me than trite phrases that sound good on the surface.
If you tell me that I can call you if I need anything, I won't do it. I may not be capable of asking for help when I need it most, or I may not be able to ask for what I really need.
If you offer something and I do not want it today, I may need it tomorrow, so please do not be offended if I refuse your offer. My feelings change frequently, and sometimes I may not even know what it is I need. I appreciate it so much when someone truly listens to the Holy Spirit and performs a kind and thoughtful act.
If I feel anger at God, it does not mean I lost my faith. It just means this is so big and so heartbreaking that I do not understand why the Lord let it happen the way it did. But I will in time. I know He has a plan forme and this will work for my good. I am still confused and hurt that it happened, but I still have faith. I know there are blessings in this, I have felt them. I know they were worth it, but I still hurt.
Please bring meals or flowers if you want to. They are a tangible reminder that someone cared enough to take time to try to comfort me. But also stop to listen so I know it is more than just a gesture.
And give me the time I need - it might be much longer than you think. Do not try to rush me through to being ok again.
Do not try to fix me. I am not broken. I am only grieving. Just love me, and I will survive.
(Copyright 2005 by Laura Wheeler, mom of Sidney who was born with lethal dwarfism. Reprinted with permission from Carrying to Term with a Negative Prenatal Diagnosis, sidneyfaith.ws/sidney/grief.htm)
Some parents experience something mystical after their child's death.
I remember every single detail about the morning that Karlee died. It was horrible, tragic. BUT there was one moment that was magical. When they finally let me in the emergency room, she had already passed. I was alone with her. Her spirit was there in the room. I felt her and she was at peace, happy, joyful. She was floating above us and happy. She was getting ready to watch Blues Clues, her favorite show. And I had an insane peaceful feeling that she was safe. Nothing more could cause her pain. She was where she needed to be. Then, in a flash, her spirit was gone. (Katie, mom of Karlee Rose, Benal, and Nikki, all of whom were born with spina bifidia)
That night after Lucas Adam died, I woke out of a sound sleep. One of the kids was standing by my bed and needed something. This happened often. Whoever it was would stand there looking at me until I woke up. For some reason they never touched me and I usually woke up before they spoke so this night was no different than usual. I rolled over and no one was there, yet someone was. I felt him. I think Luke came to tell me he was ok. Then he was gone. (Sue, mom of Lucas Adam who was born with anencephaly)
In the past five weeks since Maria’s entrance into Paradise, I’ve often wondered, How do the children in Heaven spend their days? Do they run, jump and play as children on earth or do they spend all of their time adoring the most Holy and Blessed Trinity? So, I asked Our Lord if He would give me a sign; some indication that Maria was okay, in Heaven and happy. A couple of weeks passed, and I received a phone call for my husband from someone I didn’t know. During our conversation, the woman happened to mention a dream that her 12 year-old daughter, Holly, had recently. Holly dreamed that she went to Heaven. There were rainbows everywhere with puffy clouds, a big gate and Jesus and Mary were there sitting on thrones that were made of clouds. And there were babies everywhere sliding down the rainbows! I burst into tears of ecstasy. Thank you, Jesus! My little girl is okay, she is blessed, she is bounteous in Heaven with all of the other babies who have moved on. And she is running, jumping and sliding down rainbows all the day long! (Terri, mom of Maria D. who was born with spina bifida and fatal physical conditions)
SIBLINGS AND GRIEF
If you have other children and your new baby has a fatal condition, you will have to deal with your older children's grief. Here are some suggestions:
Be honest with your children.
Use age-appropriate language to help children understand what is happening.
Listen to their fears, hurts, anger, and concerns.
Learn to use words that encourage them to talk about their feelings: "How does that make you feel?" "Do you want to talk about it?" "Is there anything I can do to help you feel better?" "Thank you for telling me that. You are a very brave person." "I know you are hurting, but I'm always here for you." "It's OK to cry."
Help children say good-bye to their brother or sister: write a letter, draw a picture, write a poem, make something for the funeral.
We also encouraged (our other children) to make or to select something special to place in the casket from them. My mom found a boy's white and blue sleeper that actually had wings and said "Angel Baby" on it. (Sue, mom of Lucas Adam who was born with anencephaly)
Celebrate the memory of their sibling: plant a tree, make a special garden, donate to a charity, make a scrapbook of memories, blow bubbles on a windy hill, or fly a kite with the baby's name attached to the string.
Keep the baby's picture in a place of honor.
Talk about their brother or sister on special days, such as their sibling's birthday. You might even have a birthday party.
Laugh and remember the good times together.
People may expect you to get "back to normal" especially if your baby didn't survive very long.
I answered the phone, and his mother asked me how I was doing, then cheerfully said, "Well, its back to life as usual for you then!" I called Kevin to the phone because I just could not talk to her. No, it is not back to life as usual. I am forever changed. Normality will come back in a different form than before. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
Try to find people who will support you wherever you are in your grief journey.
It's good to know that others are out there who survived it. After Casey died, when people started to find out, a lot of people told me that they had experienced something similar. Talking to those people was the biggest help. The ones who had been through the same thing got me through it. You think you will never feel joy again. When you start to feel better, you feel guilty. You get over that. (Sandy, mom of Casey who was born with Trisomy 18)
What do you say if folks ask how many children you have? Do you include your baby who died or not?
Each parent must come to his or her own solution to this problem. Here are some possible answers to the question:
"We have five kids, three here and two in heaven."
"We have one child but she's with God."
"Our first baby died. Thanks for asking."
Nancy Halco has three living children and two who have died. Her living children figured out how to respond when someone asks Nancy, "How many children do you have?" She replies, "Three down and two up."
WHO ARE YOU?
Children whose parents have died are called orphans. Spouses whose spouse has died are called widowers or widows. What should you be called if your baby dies, before or after birth?
We offer this suggestion. Claim the title of parent.
Parents with a child in Heaven are still mothers and fathers...and they have the challenge of grieving and loving and cherishing a child from a most painful distance. Whether our children are safe with us or resting in the arms of God, we are still their mothers and fathers...and they remain our precious babes. (Tracy Webb, Elizabeth Ministries)
We still call ourselves Nathan's mother and father, and although sometimes that might cause discomfort on the part of the person we're talking with, it's important for them to see us as his parents. I say "I've had three children. Emilie is 26, Matthew is 21, and our middle child, Nathan, died of a rare genetic disease at the age of 14." (Jennifer, mom of Nathan who was born with Menke's Disease)
Mothers and fathers heal at different rates. Try to be patient with your spouse's timetable.
Another unforeseen blessing is the drawing together of our family. I love my wife a little more. I love my children a little more. I hug them all a little more tightly and a little more often. I love my family, friends, and neighbors, even strangers a little more. I cherish my very short time on the earth a little more. And I’m much more careful to make my salvation sure so that I can see Abigail Grace again soon. All this is by choice. Be patient, especially with your wife. What is ahead is a battle of sorts. Fight uncertainty with knowledge. Fight sorrow with joy, Fight bitterness with love. (Steve, dad of Abigail who was born with Trisomy 18)
Your spouse can help in the healing, just by being there.
When I was holding Kevin's hand in Wal-Mart I told him, "I have no baby to hold, so you will have to substitute!" I meant it jokingly, but it has some truth. Having extra time and comfort from those I am closest to helps fill the gap some. And Kevin is the one I need it from most. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
Healing takes time, but it does come.
Our spiritual faith has been unbelievably strengthened. We have learned the true meaning of unconditional love. I, personally, have learned who is REALLY in control and it is not me! I can accept anything and I can accomplish anything. Our kids know we will sacrifice anything for them. I have found a true community of faith in our church. I will never be able to repay all the people who supported us and accepted Luke despite his diagnosis. These people never saw Luke or felt him but still supported him through me. (Sue, mom of Lucas Adam who was born with anencephaly)
One way to foster healing is by doing something good for others.
After Gianna was born and died, my emotions took a standstill. Instead of taking the time to grieve, I ran headlong into the busyness of life Not wanting to go to a quiet place and cry, I carried myself into a depression. My doctor was very supportive and first recommended counseling and then my volunteering at a free clinic. By reaching out to other people, I was able to begin the healing process. Instead of escaping, I allowed God to lead me. Each day I place myself in His hands, asking Him to send signals loud enough that I may respond in order to assist someone in need. (Doreen, mom of Gianna who was born with Trisomy 13)
I learned that I just cannot participate in the decision making boards; it is too hard. It makes me physically ill to do so. So, as Sidney's legacy, I built a website on Carrying to Term at http://sidneyfaith.ws/sidney/ (Laura, mom of Sidney who was born with a lethal form of dwarfism)
Faith in an eternal afterlife helps many families to heal.
The only way we are getting through this is with the knowledge that we will definitely see our daughter again. We will be able to hold her and kiss her and not have to worry about hurting her. She will get to meet her two baby brothers who have done so much to heal our hearts and see her big sister again. Our family will finally once again be whole and there will be no more goodbyes. (Heather, mom of Sydney Grace)
Our job as parents is to get our kids into heaven, and I have one up there. (Sandy, mom of Casey who was born with Trisomy 18)
 Susan Helling, "The Ride." You Will Dream New Dreams, by Stanley Klein and Kim Schive, Eds. New York, New York: Kensington Books, 2001, pp. 201-4.
 Adapted from Susan Titus Osborn and Janet Lynn Mitchell. A Special Kind of Love: For Those Who Love Children with Special Needs. Nashville, Tennessee: Broadman and Holman Pubishers, 2003, p. 142.
CHAPTER SEVEN--IF YOUR CHILD LIVES
My basic principle is that you don't make decisions because they are easy; you don't make them because they are cheap; you don't make them because they're popular; you make them because they're right. -- Theodore Hesburgh
For My Brother Ben
Blessings arrive in so many ways—
A cool breeze on a hot summer’s day
A laugh, a smile, a quiet retreat,
The feel of the earth beneath your feet.
They come packaged in the form of a safe journey home,
And in knowing that you’re never truly alone.
But of all these, gifts from above,
The most amazing is pure and faith-filled love.
It inspires us, moves us, gives us hope,
And is not a raft, but is a boat.
Its allies are truth and lessons learned,
And knowing some things can’t be earned.
Love is more than a word, it lies in proof,
Perfect examples live under my roof.
by Michelle L. Boisot, 18, (sister of Ben who was born with multiple disabilities)
Living with a child with difficulties brings both challenges and rewards. You will learn how to parent by the experiences you have. Your child will teach you skills no other child has taught you.
We had a lot to learn about caring for a "heart baby" -- but, all in all, it was not very difficult. There were feeding issues and we had to rent an oxymeter to occasionally monitor her oxygen saturation levels. All of this I learned how to do quickly. Even though our insurance provided home nursing, I cancelled it, because there was nothing that the nurses did that I couldn't do, and I have no formal medical training whatsoever. (Monica, mom of Celine who was born with hypo-plastic right heart syndrome)
Your journey can be easier when you learn from those who have walked similar roads. This chapter and the next will share some of these parents' insights.
For awhile I heard a lot of stories on TV, etc. about how hard it was to give birth to a disabled child and therefore abortion needs to be legalized to prevent that anguish. I would always talk back to the TV and say, "But you don't ask ME if it's hard--ask some parents." (Jennifer, mom of Nathan who was born with Menke's Disease)
DEALING WITH YOURSELF
The first person to deal with is yourself. Much has to do with attitude. You have suffered losses and disappointments. How do you want to live from now on? If you decide to be positive, you will be. If you want to wallow in self-pity, you will. No matter what happens with your child, you are responsible for your own emotional healing.
I can remember every doctor’s appointment, CT-Scan, MRI, shunt tap, every drop of blood taken from his body testing for all sorts of things, the smell of the hospitals, the smell of the medicines, the sounds of the machines, the sound of the doctor’s shoes as he walks towards Nick’s hospital bed, the pale look of Nick’s skin after major surgeries, the feeling of total vulnerability that I have felt seeing my son hooked up to every conceivable machine keeping him stabilized, the total helplessness, knowing that I could do nothing to help him with the pain. As the mother of a child with a disability I can honestly tell another parent there is a pain that never disappears. It doesn’t ease as I foolishly convinced myself early on that it would. You learn to deal with it, you learn ways in which to cope. You learn to be strong when others are falling apart, when others can’t seem to lift themselves out of sorrow. You learn that with time this surgery or this issue will resolve itself and pass. (Ashley, Mom of Nick who was born with spina bifida)
Your emotions may surprise you. No matter how much you love your child, you may sometimes find yourself angry, resentful, or bitter for having a child with such difficulties. Talk about these perfectly normal emotions with someone who can understand. Try to get to the root of your feelings.
It's not uncommon for parents to discover that they need to forgive someone. Spouse? Friends? Family? Their child? Strangers? Doctors? Themselves? God? Forgiveness means disconnecting the replay button on distressing incidents and moving on. Someone once wrote, "To forgive is to set a prisoner free and discover that the prisoner was you." Only as you leave behind negative emotions will you be able to deal successfully with the future.
It's also not uncommon to wish your child would die or to wonder if you did the right thing in giving birth or seeking treatment.
I remember at my lowest point, when he was around 3, and getting one diagnosis after another and the list of specialists was getting longer and longer. I made my husband take time off from work to go to an appointment because I just couldn't bear to hear someone else tell me there was something else wrong with Alex. At that point I really wondered if I did right by him by asking for heroic measures in the NICU. The thing that pulled me through was separating what my feelings were from how Alex acted. He has always been very easy going and interactive and happy. I was the one who was having trouble handling his medial issues.(Joanne, mom of Alex who has multiple disabilities)
Make a list of things you feel guilty about. Talk over the list with another person. Cross off the ones you're not responsible for. Cross off the ones you can't change. Make a plan of action for dealing with the rest. Remember that you did not cause your child's condition. You made the best decisions possible. You are doing the best you can now. Guilt saps strength and hope. Say good bye to guilt forever.
Promise that you'll relax. You're not Super-parent. You can't control everything, and you are not responsible for everything. Make a list of what's important to you. Then order the items from most to least important. Work on the top priorities. You may need to let the others slip. Dorothy Day, a social activist, once said, "If you can't meet your standards, lower your standards."
Simplify your life. Where do you really have to go? What really needs to be done? If you have less to achieve, you will be more successful at accomplishing it.
Try to avoid the "am I doing the best for my child?" morass. Obsessively searching for another treatment, educational plan, surgery, doctor, diet, or exercise can sap your energy and prevent you from accepting your child as she is.
We had people who said, "If you go out to Washington State, you can find this doctor, and if you go out here, you can find this doctor." And we just had to say, "We've gone to a lot of doctors. We've done what we could do. We have to accept." Kelsey enjoys life so much, and she helps us to enjoy it. That sense of humor! (Chylene, mom of Kelsey who was born with CMTC syndrome)
While it's good to plan ahead, try not to project today's difficulties onto the future. That only causes worry. Things often change anyway.
Keep a diary. Write down problems and how you met them. As you look back, you will see that you were able to weather crises. That will give you hope in future difficulties.
Don't isolate yourself. Get out into the world with your child.
He was a child people remembered. We took Joey to church and wherever we went, and people were very friendly . They would come over and want to see Joey. We have 7 kids but the others never elicited this reaction. People would say, "Oh, how is your baby doing?" He was unforgettable. (Erin, mom of Joey who was born with Trisomy 18)
You may have to face continual problems and adjustments. You will learn to keep going. Count the successes and focus on the joys.
We learned how to tube feed Gracie, and do everything for her. She would occasionally stop breathing and she had some seizure activity. We worked closely with Hospice to arrange bringing her home. I chickened out about 2 weeks into it - she had a severe seizure and they were about to pronounce her gone. I thought, "Hell, I can't do this in my living room with my kids - am I crazy?" But, 2 weeks later we got used to it. We brought her home on her 1 month birthday. That was a great day! (Christine, mom of Grace Ann who was born with Trisomy 18)
MEET YOUR OWN NEEDS
Caring for your child can become all consuming. You need time to yourself. List your needs and plan to meet them. Who can help you? How? Here are some suggestions to help you maintain strength and perspective so that you can continue to be a good parent.
* Make a date with your spouse.
*Hire a baby sitter and take a long, leisurely bath.
*At least once daily, spend fifteen minutes doing something you like. Find someone to watch your child during that time.
*Attend a mother's group, weekly if possible. You could take the child along.
My husband started sending me out on Saturdays when he was home to do whatever I wanted for awhile. After the other two children were in school, Nathan was portable, so we went to book stores, craft stores, etc. together. He liked going out, and I think it was good for him socially. I know it was good for me! Another way I got “me” time was late at night, after everyone was asleep. Often Nathan would still be wide awake at midnight or later. I couldn’t sleep until he was asleep, so I used those late night hours for me—I’m an artist, so I did a LOT of my artwork in the wee hours. He’d lie there and watch me and eventually drift off to sleep.(Jennifer, mom of Nathan who was born with Menke's Disease)
SUPPORT GROUPS AND AGENCIES
Other parents of children with difficulties can offer much support and insight.
I’d been looking on the Internet for a support group. I just wasn’t finding it. Suddenly I met someone who introduced me to an Internet group for parents of disabled children called Our-Kids. I’d never found anything that exactly matched our situation, and then suddenly there it was—a group of parents of children, mostly severely disabled, all dealing with many of the same issues! That group now numbers around 800 families. I still stay very actively involved. (Jennifer, mom of Nathan who was born with Menke's Disease)
Associate with local support groups for children with the same or similar condition as yours. If you can't find such a group, start one. The acceptance level in such groups is striking.
We went to a race for children with limb deficiencies. It is the only place I've been to where there were thousands of people and nobody stared because everyone there was familiar with limb deficiencies. (Patricia, mom of Jessica who was born with limb deficiencies of both arms and both legs)
Ciarra has changed me so much. I sure have slowed down to enjoy the world more. She is perpetually hopeful, and most often smiling. She is the closest thing to an angel as I will ever see. Through her, I have started an online support group. We are a close knit community. Several of our members are moms I tried to lend a little hope to when I found them shortly after their diagnosis. (Michelle, mom of Ciarra who was born with Down syndrome)
Use the internet, ask your physician, or contact state or local agencies about helpful groups. Spend time, via internet or phone, researching agencies which might provide the services and information you need. Often one contact will lead to another. Here is the question to ask:
"My child has ______________ (name condition and describe). I am looking for agencies that may assist us in meeting his needs as well as parent support groups. Can you make a referral?"
If the agency says they don't know of any referrals, ask:
"Can you refer me to someone who may know?"
Keep an alphabetized list, either on file cards or in a computer file, of who you have called, if you left a phone message, when you called back, the result of the phone call, and so on. Put unhelpful agencies into their own group. If you have to call again, you will know which agencies were able to assist you and which were not.
We took advantage of First Steps - a program for special needs kids. Did physical, occupational, and speech therapy with Karlee. Later enrolled her in special needs preschool. She got her first wheel chair and this was the best thing we did for her. It allowed her to sit up (she had low muscle tone) and be at her peer's level. She blossomed! She was very verbal and very smart. She learned to count in Spanish! (Katie, mom of Karlee Rose, Benal, and Nikki, all of whom were born with spina bifida)
Generally families are able to care for their children. However, neighbors, family members, friends, and
agencies can assist.
Nathan and I spent 14 years living almost symbiotically. He was dependent for all of his needs, and I met those needs willingly and eagerly. My husband and I did all his care, only very occasionally getting a nurse for him. As our other two children grew older, they were involved with Nathan’s care as well. (Jennifer, mom of Nathan who was born with Menke's Disease)
Find out what governmental help is available and what laws can assist you. If no legislation exists, work for some.
RESPECT YOUR CHILD
Your child is more like other children than unlike them. Respect your child as a human being. Avoid talking about your child's "problems" within hearing of your child. Your child ought not think of herself as a "problem." If someone asks you about your child's condition in the presence of your child, think of a positive, stock answer. Use your child's name, and address your language to your child. People First language helps.
What's wrong with him?
Answer: Nothing is wrong with Wayne. You're a great son, aren't you, Wayne?
Oh, I mean why is he in a stroller? He's so big . . .
Answer: Oh, that! Wayne thinks the stroller is great, don't you, Wayne? If he didn't have spina bifida, he'd have to walk around this store like me and be bored silly. Now he gets to ride like the wind.
When you discuss your child with others, focus on what she can do, not on what she can't do. How you discuss your child has a great influence on how others think of her. It also has an influence on how your child thinks of herself. Do you want your child to think of herself as a burden to you or as a gift? A child's deficits are best kept as private as possible, but his assets can be proclaimed to the world. Assets are not necessarily things a doctor, guidance counselor, or psychologist would list. They are traits that make your child special to you.
As soon as your child can speak up for himself, teach him to do so. He'll have to learn this sooner or later.
What's wrong with him?
Child: Are you talking about me? Nothing's wrong with me, is there, Mom? I'm in this stroller because I have spina bifida and I can't walk very fast in the store. Nothing wrong with that, is there?
Teach your child how to ask for, not demand, help. Children need to know that parents are not mind readers nor are they slaves or robots. Parents have intelligence and feelings, and both need to be respected. When your child asks for help, respond lovingly and patiently. If the child can do the task for himself, politely tell him so. If it's something you need to do, perform the task with joy.
My five year old Alexandra was born with a clubfoot. We found out when I was 20 weeks pregnant from my ultrasound. She had four surgeries to help correct her foot. Whenever anyone asks if she broke her foot, she matter of factly tells them, "No. I was born with a clubfoot." She is not ashamed or embarrassed. She is in gymnastics and doing great. I have never made a big deal or acted like she was any different than any other child. I think that has made a huge impact on how she handles the situation. If I made a big deal, I believe she would, too. (Sabra, Alexandra's mom)
Build your child's self esteem. Include him in all you do. Let your child set limits on what she can do. Allow your child to fail. Challenge him to reach farther. Enjoy the successes and learn from the failures.
EXPLAINING TO OTHERS
You'll want to explain your child's condition to family and friends. Invite them over and teach them how to respond to your child. Keep them updated on your child's progress. One mother wrote a letter to friends, family, co-workers, and neighbors and gave the address of a foundation that researches cures and treatments for her child's condition.
If you get a lot of unsolicited advice, let folks know that this is your child, not theirs, and that you are in control. You may often find yourself saying, "Thanks for the advice. I'll think about that." A non-committal response can avoid a confrontation.
How do you handle questions from strangers and acquaintances? You may not want to answer some of these questions. Make a list of common questions and write down your responses. Memorize the responses so they are on the tip of your tongue.
One family designed a small business card that explained what they wanted strangers to know. The card read:
YOU HAVE JUST ENCOUNTERED a person with an autism spectrum disorder. He may be acting in an unusual way. Please be understanding! Autism is a developmental disorder that prevents individuals from behaving in a typical manner. http://www.autism-society.org
Would you want to design a similar card for your child?
Sometimes you have to educate people on the spot.
People have a hard time understanding that she's a person. They pretend we're not there because they don't know what to do. You see mothers telling their kids, "Don't look. Don't stare." And you wonder why. You think if they would just come over and say Hi. If I can get someone's attention I'll smile and say hello to people and they'll relax. Little kids will be very interested in Kelsey's wheelchair or her walker and want to touch it and mothers will be, "Ahhh--don't touch!" And I will say, "Kelsey doesn't mind. She likes to share." (Chylene, mom of Kelsey who was born with CMTC syndrome)
YOU SAY YOU WANT TO HELP
Some folks will say, "What can I do? I'd like to help." You may feel uneasy asking someone to do something specific. How about creating a list of ways folks can help and handing it to them?
Ways You Can Help
Thank so much for offering to help us. It means so much. Here are some ways you can help. Would you like to pick one and let us know what day you can help?
Wash the baby's bottles.
Do the laundry.
Make a meal.
Baby sit the other children.
Drive our child to an appointment or practice.
Write thank you notes.
Clean the bathroom.
Wash the kitchen floor.
Come and sit with our child while we go out for a few hours.
Repair the __________ (fill in the blank)
Do our grocery shopping. We'll give you list and the money.
Do our Christmas shopping. We'll give you the list and the money.
Cut the grass.
Weed the garden.
Freeze (or can) the vegetables.
Take our kids to the park (zoo, fair, museum).
One mother described dealing with her child's various medical crises as "watching a line of dominoes tumble, one after another." Crisis may follow on the heels of crisis, and diagnosis supplant diagnosis. Eventually the dominoes stop falling, and life assumes a calmer pace. This same mom reminded herself "that it's the journey that counts, not the destination. Sometimes it's a bumpy ride; other times, it's very smooth. But it's always interesting. And, most importantly, it's a journey that John, David, and I are taking together."
Being a new parent of a kid with special needs has to be one of the hardest things I've ever gone through. Alex has multiple disabilities and one medical problem would take the spotlight, and we'd put out that fire and something new would crop up, and I'd have to learn a whole new ball game as well as trust my own instinct and common sense. It really helps to know that there is a light at the end of what seems a very long tunnel. Not sure if things actually get better or we just get used to dealing with it or a combination of both. (Joanne, mom of Alex who was born with multiple disabilities)
Early intervention, which involves physical and mental stimulation geared to your child, can help your child meet her potential. Ask your pediatrician or hospital for referral. National organizations dealing with your child's needs may be able to advise you on techniques you can use at home. Also contact a local politician regarding laws and government agencies that can help your child. Early intervention centers support parents through groups and meetings. Continue to phone agencies and individuals until you get the information you need. The goal is to help YOUR child become what HE can become.
We belong to the Touch of Love group which has about thirty other kids besides Marissa who have congenital limb deficiencies. We met lots of kids with hands like hers and we could see how other families dealt with that. Inspirational speakers, who are adults with prostheses or congenital amputations, come and share with the group. (Mary, mom of Marissa who was born with an absent left hand due to amniotic band syndrome)
Sometimes dealing with the system is more difficult and frustrating than dealing with your child. What services do you really need? If getting to or paying for parent support groups, intervention sessions, play groups, and exercise classes is causing stress and disruption, step back and evaluate if everything you are doing is really necessary. Is what your child gaining worth the price? Can you do something at home, on your own time, to achieve the same results?
In obtaining what will help your child, ask, "What is the goal? How can the goal be reached?" Think creatively. By trying to make your child "fit" into society, you may be approaching life from the wrong angle. Maybe society needs to "fit" your child. Your child may reach goals differently than other kids do. For example, you may want your child to be mobile. Does this mean that your child has to learn to walk? Maybe. Maybe not. Mobility might involve motorized wheelchairs more than strengthening weak muscles.
Imagine a technological device that would help. What would this device do? How might it look? You don't have to know how to build it or where to get it. Just think about who might be able to provide this device or something like it. Where might you find these people? Check with: Government agencies which deal with folks with disabilities. The internet. Agencies devoted to research and education on your child's condition. Computer department heads at colleges and universities. Companies that provide assistive technology. Children's hospitals and medical centers. Mechanics. Carpenters. Electricians. Computer techies. Engineers. Someone may be able to design and construct what your child needs. If this can help your child, maybe it can help someone else, too.
Figure skating has been my favorite. My father used an example provided by the War Amps to create a walker out of welded steel and hockey sticks, so that it could slide across the ice while providing me with support as I learned to skate. (Stacy, an adult who was born with amniotic band syndrome which resulted in the disfigurement of her left hand and an above knee amputation)
Presume that the child will become competent in using the technology. The goal is to meet the child's needs.
Marissa has both a passive and an electrical prosthesis. She uses the passive one for ballet and the electrical one for theater and normal functioning which requires tying of shoes and picking things up, all of which she can do. (Mary, mom of Marissa who was born with an absent left hand due to amniotic band syndrome)
MEDICAL OPINIONS AND OTHER DIAGNOSES
If your child needs treatment or develops new symptoms, get a few medical opinions regarding treatment. Be assertive and ask for pros and cons regarding every treatment option.
Be sure that specialists have access to previous records and assessments including the most recent ones. Let them know if symptoms or circumstances have changed since the last assessment. This is particularly important for a new medical team which has no previous experience with your child.
A few years ago Kelsey had a bad reaction to anesthesia. After her surgery, she was having a hard time breathing and I saw that. She started to fight and hit which people do when they can't breathe. But so many people including doctors assume that when someone has as significant a disability as Kelsey, that when they start hitting, they are being aggressive. And they want to stop it. I kept saying, "No, that's not it. She's having a hard time breathing. That's why she's acting like this." They gave her medication to settle her down. She was already having a hard time breathing and she stopped breathing. She ended up on a respirator for three weeks. It made me see, one more time, that doctors need to listen to the parents. The doctor on call was not one of her regular doctors and he did not know Kelsey. One of her regular doctors said, "You should not have let them do anything until you had called me." (Chylene, mom of Kelsey who was born with CMTC syndrome)
If your child has a fatal condition, doctors may not be able to predict accurately how long your child will survive or what your child will be able to do.
A big part of his brain was missing. But Joey did the impossible. They told me that he could not see but he would follow me with his eyes. He would touch your very soul with his glances. At night before I would go to bed, I would go in to Joey and tell him, "Night Night." He would go, "Ugh!" for me to hold him. This was every night. The nurse would put a duck on the corner of his blanket and he would reach out and knock that duck off. He was an absolute miracle. (Erin, mom of Joey who was born with Trisomy 18)
Society, including the medical community, has schizophrenic attitudes toward disability. Prepare yourself to advocate for your child. You may feel like you are the only one who values her life.
The teaching hospital is equipped for special needs access. "We care about the person with special needs and so we have this special ramp, this ramp you can use to wheel your pregnant carcass up on your way to abort your 20-week-old Down syndrome baby per the good doctor's suggestion." (The prejudice against Down syndrome children) didn't end with doctors. We talked to others who said that when their children were born, instead of sending flowers, people sent apologies. One person told me some particularly cruel comments another mother made at a playground. Another said her doctor was disgusted that she wouldn't abort her child. Yeah, our culture really "cares" about those with special needs. Is it any wonder moms get the impression that Down syndrome (or anything else) is hopeless and cave under the pressure and fear? (Ashli, mom of Emmil who was born without Down syndrome)
You may be offered non-treatment for a possibly correctable problem.
Karen's heart defect was not quite as bad as originally thought and could be corrected with one open-heart surgery. I was shocked when the cardiologist told me he would support me 100% if I decided not to agree to the surgery and allow her to die. This was especially hard to hear because, as a nurse, I knew that the doctor would have been otherwise enthusiastic about an operation offering a 90% chance of success - if my child didn't also have Down syndrome. (Nancy, mom of Karen who was born with Down syndrome)
You may have to fight for your child's treatment.
The neurosurgeon decided the shunt was not working and that she needed a different one. Just days before
Thanksgiving, they did the surgery. We were in the hospital for 3 very long months. We literally had to fight for Karlee's life 24/7. We never left the hospital. Finally, in February, we returned home. (Katie, mom of Karlee Rose, Benal, and Nikki, all of whom were born with spina bifida)
No one can predict with complete accuracy what your child can achieve. Strive to have your child reach his potential by giving your child every opportunity at a normal and full life.
I learned to walk with a prosthesis at the age of fifteen months, and I have been walking, running and playing sports ever since. I have participated in track and field and figure skating.. I’ve played volleyball with our school team, I’ve taken swimming lessons for over five years completing eight levels and I played softball in high school girls' league. (Stacy, an adult who was born with disfigurement of her left hand and an above knee amputation due to amniotic band syndrome)
". . . the doctors had told her that Charity would be unable to enjoy any of her senses. She wouldn't be able to see, hear, feel, taste, or smell. She would know nothing of what was going on around her, would never have any control over any part of her body, would never experience or be able to express joy, happiness, and love. . . .What was most amazing to me, though, was her personality. She loved to be held and cuddled, she fussed if she didn't get her bottle on time, she enjoyed taking baths, and more and more her radiant smile was becoming a sought-after reward by all of us. . . .Not only could she hear, she could obviously hear well! No matter how quiet we tried to be, she could always tell when one of us was near. And she visibly reacted to external sounds. For instance, she loved music (the real kind, rather than my singing), but only certain types." (Blaine, adoptive father of Charity whose CT brain scan revealed "essentially no visible temporal, parietal, or frontal brain" in the book One Tattered Angel)
Sometimes parents have low expectations of what their child can achieve. Fight these thoughts and let your child try. Expect your child to do as much for himself as possible.
When she got to be about two years old, I was thinking about how most two year olds walk around in their parents' shoes and how Jessica would never do that because of her limb deficiencies. The next thing I know she puts the shoes on her arms and comes clomping into the kitchen in them. (Patricia, mom of Jessica who was born with limb deficiencies of both arms and both legs)
DEALING WITH PROFESSIONALS
YOU are the expert on YOUR child. Doctors study symptoms and diseases. YOU study YOUR child. YOU know when something does not seem right. If a doctor minimizes symptoms which alarm you, get a second opinion. And maybe a third. If suggested treatment seems wrong to you, make the specialist justify it.
When Kelsey was 3 years old, she was really, really sick. We made a decision that we wanted to bring her home, to be held and be with the family. We felt she spent way too much time in the hospital. So we got an oxygen tent and we got suctioning and nurses and we brought everything home with us. Some doctors told us that we were in denial and we didn't understand what we were doing and this wasn't the best for Kelsey, but we just felt that she needed love and she needed to be out of the hospital. She got better. When she was a baby, I saw this spark in her eyes that she was a fighter and I felt like she was starting to lose it. She got that spark back in her eyes again. Not that she hasn't been back in the hospital and not that she hasn't gone through difficult times because she has, but she hasn't lost that spark again. (Chylene, mom of Kelsey who was born with CMTC syndrome)
Depending on the advice given, ask yourself if you believe that:
· My child will outgrow the concern?
· I might be hostile, over protective, or causing the problem?
· This problem really ought to be left untreated?
· The treatment suggested makes sense?
· Continuing treatment that is not working is going to magically work now?
· My child ought to be denied the treatment protocol because he's not "normal" so "what good will it do?"
· My child will never _____________ (fill in the blank.)?
I have a 10 year old son who was born at 26 weeks. He had a very difficult NICU stay with the worst complication being lung hemorrhage and cardiac arrest that lasted ~ 30 minutes when he was 20 days old. The NICU doctors advised us not to continue with any heroic measures since it could only result in severe multiple disabilities. It would be the best and kindest thing to let him die. His life would be non productive and full of pain. Alex will never be " norma,l" but he surely has had a fulfilling life and has made an impact on just about everyone he meets. The brain is a strange and wondrous organ, and X rays and scans can't predict outcomes. Alex had a CT scan. He has "catastrophic" loss of white matte; the gray matter in encroaching where the white matter should have been. At 10, he talks (non stop it seems at times) clearly and understandably and has a very extensive vocabulary. He is in a regular 3rd grade classroom with needed supports. He is below grade level in many areas, but his personality makes him just one of the kids. He plays ball with the Miracle League of Michigan. When Alex was about 5 or 6 and just becoming aware that he was the only one in the school with a wheelchair and thick glasses, I was getting him ready to catch the lift bus to school and he looked me in the eye and asked why he couldn't walk like everyone else. So, as I buckled the straps on his wheelchair, I told him he was born too early and too small (smaller than a 2 pound can of tomatoes) and that his heart had stopped and it caused a big boo boo in his brain. That the doctors told us the boo boo would make it so he couldn't walk and that he couldn't eat, think or talk (they said I wouldn't be able to talk Mom?????). He thought a minute, looked at me and said, "Know what mom? I sure fooled all those doctors." (Joanne, mom of Alex who was born with multiple disabilities)
Select a professional who:
· Takes time with your child.
· Knows how to speak to and handle your child to minimize anxiety.
· Answers questions in understandable terms.
· Listens to you.
· Respects your judgment.
· Welcomes your opinion and suggestions.
· Treats you as part of the team.
· Is humble enough to say, "I don't know, but I'll try to find out."
· Will suggest a specialist or second opinion.
· Has a positive outlook and will help your child reach her potential.
· Clearly outlines goals and time frames.
To insure that some of these qualities are met in any professional, ask the following:
· Would you please explain that again?
· May I share my experience with my child in this regard?
· What is the low and high spectrum of what children like mine can achieve?
· What goals do you see for my child? What is your projected time frame in meeting them?
· What is your plan if goals are not met on time?
Evaluate decisions as they are made and results are seen (or not seen). If a decision does not give the expected result, re-evaluate and decide anew. Fight the tendency to look back and regret a choice. You made the best choice you could with the information you had. You may have new or more information now, but you didn't have it then. Regretting past choices is a bottomless pit. Don't fall into it.
To prepare for visits with professionals:
1. Read up on your child's condition and on what kids with it can and cannot do. Be prepared to present this to the experts.
2. Make a list of your questions and concerns.
3. If you have a particular concern, keep a log of your child's behavior and bring it with you to document your sharing.
4. Get to the topic at hand and stick to it.
5. If you don't like what you are hearing, politely but firmly speak up.
6. Ask questions if you don't understand something.
7. Say no to things that don't feel right to you.
8. Form a partnership with the professionals.
9. Tape record the conference and later review it.
10. Take notes.
Keep dated records of all medications, treatments, options, therapies, phone numbers, ID numbers, phone and office consultations, and evaluation and assessment reports. File all these in chronological order. You will be able to quickly and can easily compare current and previous information.
If you feel that a professional is not acting properly, find one who will treat your child better.
Early intervention taught me to advocate and gave me the confidence I needed to stand up to the docs. I asked questions and got answers. Just because Alex had brain damage wasn't reason they couldn't do something to help. My biggest obstacle was being "nice and polite" The first time I fired a specialist, it was the respiratory doc. He ordered another pH probe after the fundo/gtube had been placed. Alex began to get ill and developed a fever and his breathing was beginning to sound a bit weird, just the beginning of something and mom's instinct. The doc blew off my concerns, said Alex was fine and did another pat on the head thingie. I had started to butt heads with this doc about 2-3 months earlier when I refused to give Alex a medicine he prescribed. Alex developed a rash and his pediatrician determined it was an allergic reaction to the med. The respiratory said no one was allergic to the med and to continue giving it to Alex, and I refused. Just the same, when I fired him I was actually worried about hurting his feelings, and my knees were shaking. It wasn't something that was easy to do but, believe me, it was liberating. The couple of times I ran into a doc that didn't believe in Alex as a viable human being. it got so much easier. I learned to take steps to bring the doctor's behavior and attitude to the attention of those in authority, the head of the department, insurance companies, patient relations. Now I don't even quiver a little. (Joanne, mom of Alex who has multiple disabilities)
SUMMARY OF HOW TO LIVE
Kathie Snow, in her book Disability Is Natural, summarizes the following points for success:
1. Don't worry.
2. Focus on your child, not the disability.
3. Have your child in as natural an environment as possible.
4. Presume that your child is competent.
5. Have high expectations.
6. Meet your child's unique needs.
7. Provide tools for success.
8. Help your child naturally.
9. Experience the dignity of risk.
10. Anticipate criticism
11. Protect your child's privacy.
12. Listen to your inner voice
The Ten Commandments for Parents of Handicapped Children
1. Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.
2. Never underestimate your child's potential. Allow him, encourage him, expect him to develop to the best of his abilities.
3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.
4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.
5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.
6. Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends or the public.
7. Be honest with your feelings. You can't be a super-parent 24hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts when ever necessary.
8. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.
9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.
10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.
 Simons, Robin. After the Tears: Parents talk about raising a child with a diffability. Denver, Colorado: Children's Museum of Denver, 1985, p. 13.
 A Special Kind of Love: For Those Who Love Children with Special Needs, by Susan Titus Osborn and Janet Lynn Mitchell (Nashville, Tennessee: Broadman and Holman Publishers, 2004), p. 43.
 Jillian K. Welch, "The Journey." You Will Dream New Dreams by Stanley Klein and Kim Schive, Eds. New York, New York: Kensington Publishing Corporation, 2001, p. 198
 Kathie Snow. Disability Is Natural. Woodland Park, Colorado: BraveHeart Press, 2001, pp. 436-440.
 Reprinted with permission from Spina Bifida Family Support and reprinted from aposting to the Children’s Special Health Care Needs Mailing List, [CSHN-L]sponsored by the University of Florida’s Institute for Child Study. Anonymous Author
CHAPTER 8--INTO THE FUTURE WITH A CHILD WHO SURVIVES
We cannot do everything and realizing that gives us a sense of liberation. This enables us to do something and to do it very well. -- Oscar Romero
What You've Taught Me
Ah, Kay-Marie, what have you taught me?
That our expectations are not always met,
That our fantasies are indeed fantastic,
For reality is far richer than anything we can imagine.
You have taught me
That artificial limbs are much less trouble
Than PMS in a teenager,
That a mind that struggles with math
Might soar when it comes to oils, acrylics, and pottery,
That it is better to never be able to ballet
Than it is to never be able to live.
You've taught me that the worst I thought of you
And the best I thought
You far surpassed.
Back when we adopted you
I could not know the future.
But if I had known it,
I'd take it all again--
The trials and the triumphs--
Because they mean you are in our lives.
--Madeline, Mom of Kay-Marie who was born with two lower limb deficiencies and other difficulties
BEING A NORMAL FAMILY
How you deal with your child, and how you allow society to deal with him, will determine whether or not you are a "normal" family. Carry on with whatever activities are normal for your family, making the necessary adjustments to include your child.
As the weeks went on, her seizures and apnea increased. We got used to it. We took her to Grandma's, the mall, the park and we took several walks around the block. We tried to make it as normal as we could. Hospice was a tremendous support. The nurse was on call 24/7. She would come as often as I wanted. In addition, we had a nun, a dietician and a social worker supporting us throughout our time with Grace. We wanted things to be as normal as possible. (Christine, mom of Grace Ann who was born with Trisomy 18)
All children require time, input, and concern, not just one with difficulties.
It is a little crazy with all the doctors' appointments. Sometimes, I feel frustrated because I don't know what is wrong. Emily has taught me to appreciate the little things in life, not to take anything for granted especially love and health. I love the cuddles, the smiles and giggles, and just giving her a bath. Story time is so special with the 3 youngest. Even though my 16 year old is driving me crazy, I look at her and realize one day she is going to be out on her own, living her own life, and I pray I have taught her right from wrong, how to protect herself, manage money, and how to love unconditionally. It takes a lot out of you emotionally when you have children, not just ones with special needs. (Sabra, mom of Emily who was born with enlarged ventricles in her brain)
"But," you object, "normal children don't need this level of attention."
Not so. All infants and toddlers need a great deal of attention.
"But those children will grow out of needing that much care. My child never will."
That may be true, but why should that fact keep your family from being "normal?"
Kelsey has been part of all our family vacations. She uses a sit ski to ski with us. She loves roller coasters, speed boats, anything fast. One of our nurses put in for us for a Wish Come True (Kelsey had been very sick) so we went to Disney World. Kelsey goes into the water in her beach chair. We have a family Easter egg hunt every year. Kelsey is in Girl Scouts. She's been on a whale watch, went to New York on the train, and went to Discovery Cove and swam with dolphins. In school, with support, she walked across the stage for her eighth grade graduation. She brought attendance down every morning to the school office. She's been in Special Olympics and got some awards. She can bowl. We can push her chair right next to the ramp--we put the ball there and Kelsey pushes the ball down. She's out on the court playing basketball with her friends. Eight kids came over and we had a birthday part. Just meeting Kelsey for the first time you don't realize how much she enjoys life. (Chylene, mom of Kelsey who was born with CMTC syndrome)
We decided that we needed to keep our lives as normal as possible. We needed to have fun, “make memories,” and try to be a normal family. So we took Nathan everywhere we went unless he was not well. All our friends loved him and felt very comfortable with him. He was recognized and known to the people at stores we frequented. The more normally we treated him, we figured, the more normally people would see him. We traveled, camped (in my folks' motor home, so we had electricity for Nathan's feeding pump), went out to dinner, to church, concerts, movies and school activities, etc. We had a very good life together. (Jennifer, mom of Nathan who was born with Menke's Disease)
What are "normal" families like? Normal families:
· Do things together.
· Love one another.
· Help one another.
· Disagree sometimes but love each other anyway.
· Endure sibling rivalry.
· Support each other.
Our pediatrician team told us about occupational therapy, and friends referred us to a prosthetic company. Marissa has had six prostheses for her absent left hand. She's a ballerina and plays violin. She is super smart, a talented singer, and does not let her disability hold her down. In fact, she does not view her absent left hand as a disability as she's had it all her life. Right now Marissa is very involved in musical theater. (Mary, mom of Marissa who was born with an absent left hand due to amniotic band syndrome)
Being a normal family requires some risks. Every child takes risks. Think of toddlers learning to climb stairs or older kids climbing trees or learning to ride horses. The potential for injury may be present, but does that mean your child should not try?
Kelsey has a few seizures a week. We have to be careful because we like her to be as independent as possible. We like her to use her walker and to sit in chairs other than her wheelchair, but we have to be really careful and watch for signs of a seizure. Once she was sitting at the kitchen table--she doesn't use her wheelchair at the table--but I just turned her away from the table and she had a seizure, fell forward, and broke her two front teeth. They got bonded. They didn't fall all the way out. (Chylene, mom of Kelsey who was born with CMTC syndrome)
As you learn day by day, you will find that you are dealing with your child's difficulties. Life assumes a manageable routine, and joy returns.
Vikki grew beautifully. With physical therapy and all the other therapies, she crawled at 13 mos. and walked at 19 mos. To think that they gave her a 30% chance of ever walking! My son Michael is now 16 and he is hanging in there at school (11th grade). He continues to struggle with his ADD stuff and just being a teen. He has had no problems with his left foot/leg, other than dealing with its limitations and lack of muscle in the calf. He's ALWAYS a challenge! But I love him so! Victoria will soon be 12. She is beautiful! We haven't had any major surgeries or hospitalizations since she was a year old. She hasn't been on meds for about 2 years and has stayed relatively healthy. She did develop an increased scoliosis (26 degrees). She will be wearing a body jacket for at least 18 months. She wears arch inserts in her shoes and a night brace on her left big toe that has developed crooked. She is simply amazing and really a happy kid! We are EXTREMELY close and love to sing in the church choir together. She is also on the honor roll & citizenship at school. She is my hero!! (Susan, mom of Victoria Ann who was born with spina bifida and of Michael who was born with a club leg)
Parenting a child with difficulties necessitates new decisions, adjustments, and attitudes. Marriages break up when a spouse cannot adjust, gives undue attention to the needy child, or refuses to help in child care. Many of these marriages would have dissolved over another issue at a later time, because every marriage is, at some time, subject to unexpected stresses and plan changes.
Avoid the pitfalls by
· Communicating with one another.
· Refusing to pin blame.
· Integrating your child into your life instead of having your life revolve around your child.
· Trying to understand your spouse's emotions.
· Helping out.
· Discussing treatments and therapies together.
· Jointly attending sessions with professionals.
· Sharing child care.
· Creating an emergency procedure--who does what.
· Selecting which parent will have the final say if agreement can't be reached.
Finances might be a concern.
Finances were the biggest difficulty we had. We had insurance, but it didn’t cover everything, and there were big deductibles each year. We qualified for skilled nursing care, but the expense was so great that we seldom used it unless absolutely necessary. We eventually took out a mortgage to pay medical bills. We felt like we were always living on the edge financially. We’d made a decision that I would stay home with our children, and, when Nathan was diagnosed, it became a necessity. Our one income was stretched way too tightly. Our medical expenses were so high that they ate up anything we might otherwise have saved. And because we had a middle-class income, we fell through the cracks when it came to getting any assistance. (Jennifer, mom of Nathan who was born with Menke's Disease)
Insurance may pay for your child's medical bills. If not, ask your insurance company for referral to charitable, church, and governmental agencies that can help. Support groups can also provide guidance. Keep searching until you discover all the help for which your child may qualify.
If you are refused assistance, be sure that the refusal is lawful. Parents have been told that they were ineligible for medical insurance when such was not the case. Double check with other agencies and officials.
Friends and family, veterans, church, and civic groups, may begin a non profit fund for your child's medical needs. Many people and organizations are willing to assist. Fund raisers are limited only by the imagination. Be sure to write a thank you note to every group that helps.
If you need more financial help, turn to your local politician. In the United States, this would be your state or national representative. Involve your senators, too. Also call local TV and radio stations and local newspapers about your dilemma. The more publicity, the better the chance of obtaining funds.
Your tax office can help you determine if items you purchase are tax deductible. .
Some employers can make adjustments for parents of children who need special care.
My boss said, "Why not work at home for the rest of your pregnancy?" and, after Mikey was born, he said, "Why not continue working at home?" I work from home and have a nanny to take care of Mikey. I can hear him constantly. When I want to take a break from work, I go and play with Mikey for a few minutes. (Jennifer, mom of Mikey who was born with cloacal exstrophy)
Sometimes a change of attitude makes a big difference.
One day I was talking with a friend at church. He and his wife had multiple miscarriages and then finally gave birth to three children, each more premature than the one before. All lived but had very rocky beginnings. I asked him how they dealt with the stress of all the medical bills. He said, “Well, some people have car payments and house payments. We have kid payments.” A load slid from my shoulders at that moment. I would do or pay ANYTHING to help Nathan to live and to have a good life. Suddenly I had a new perspective. I won’t say the financial stress wasn’t still there, but now we could look at the bills as something we were doing for our child, and not as a purely negative thing. (Jennifer, mom of Nathan who was born with Menke's disease)
As your child matures, other children may tease or ridicule him for being different.
I am born with deformed fingers. Everything was great till I started school. Then the teasing started. Almost everyday they teased me cause of my fingers. I was scared to walk home from school alone and had almost no friends in school. Teachers just said, "Don't care about them. Then they will stop." They didn't stop. One day my mom was outside hanging up clothes and I came home from school. I walked just past her and asked out of the blue, "What is the reason for me to live?" I didn't try to kill myself but I had that thought lots of times. (Elin, a young woman with digit loss due to amniotic band syndrome as well as neurofibramatosis)
Everyone in my town and school knows who I am and the reason behind my disability. Everyone understands, and they have learned to look past it to see the real me. When I was seven years old, my family moved. This was a shocking experience. No one knew who I was, and they didn't understand me. It was hard to make new friends, and I was constantly stared at. After a few months, we moved back home to the people who understood me. (Stacy, an adult who was born with disfigurement of her left hand and an above the knee amputation due to amniotic band syndrome)
You, as parent, may be more aware of staring or negative responses than your child is.
Just the other day in the store, a man, his wife, and their six children were staring at Jessica, and they were not ten feet away from us. They were speaking Spanish which I do not speak so I felt they would not understand anything I said to them. I wanted to say something mean. Then we left the store, and one of my older daughters asked Jessica if she had noticed the staring. She said no. She had been looking at other things. (Patricia, mom of Jessica who was born with limb deficiencies of both arms and both legs)
While you cannot fight your child's battles, you can educate his school peers by talking to them about birth defects and helping them to understand your child. This takes the mystery out of the disability and may make your unique child one of the most popular.
There were kids whose parents requested that their kids be in Kelsey's class because those kids would learn to be more compassionate and caring. (Chylene, mom of Kelsey who was born with CMTC syndrome)
When your child is able, teach him to speak up for himself.
I told Jessica, "When people stare, just wave or say HI!" (Patricia, mom of Jessica who was born with limb deficiencies of both arms and both legs)
When I was 19 was the last time anyone teased me. That boy was about 2 years younger than me.
He asked me where I was hiding my fingers. I asked him where he had hidden his brain. (Elin, a young woman with digit loss due to amniotic band syndrome as well as neurofibramatosis)
Children often view themselves differently than they will when they are older.
I was at the store to buy some candy when I was 12 years old. A lady asked me: "Did you lose your fingers in a meat cutter?" I said, "NO, I was born like this." That lady should have known better than asking that to a 12 year old kid. Now sometimes, when I am on the bus or the subway, people ask me: "Can I ask you a personal question?" I say, "Yes. Sure." I know what they will ask. And then they ask me what happened. I tell them and they say, "Oh, OK!" I think it is ok that they ask rather than think I lost my fingers. We have students in our daycare who at times ask me what happened, and I say I was born like this. Sometimes no one notices it before I tell them." (Elin, a young woman with digit loss due to amniotic band syndrome as well as neurofibramatosis)
I have found ways to deal with people staring. I simply smile. If a young child has questions about my appearance, I feel honored to answer and give them a better understanding. (Stacy, an adult who was born with amniotic band syndrome which caused disfigurement of her left hand and an above the knee amputation)
Foster pride and self worth in your child, and you may be surprised to see how your grown child views what you once considered a tragedy.
I am a member of The War Amps Champ Program. I regularly attend their seminars to learn about new technology for amputees. They have helped me understand who I am and that I should be proud of what I have accomplished. (Stacy, an adult who was born with amniotic band syndrome which caused disfigurement of her left hand and an above the knee amputation)
My fingers were completely webbed at birth, and both hands were joined. The plastic surgeon has done an amazing job. I did have a few problems at school, mainly other kids picking on me because none of us had ever seen anything like it! My mum told me I was special, but it does little to ease the pain when you're six and struggling to fit in. But now I don't even really think about it. It's only when I notice someone looking at me sideways, that I remember "Oh yeah,I'm special". As soon as I got over trying to hide it, life became a lot easier. My one regret is that living in a jandal (thong, flip-flop) nation I don't have the toes to hold them on!! (Kirsty who was born with deformities of the hands and feet due to amniotic band syndrome)
MAKE A WAY
If you want your child to be included in a certain class or program and are meeting resistance from those in charge, talk to the officials. Educating them about your child's abilities and needs may be enough to grant your child access to the group.
Our church St. Lucy's has learned from Kelsey. They were nervous when I went to sign up Kelsey for CCD. They first said, "Do you mean we'll get a special class for Kelsey?" I said, "No, that's not what I was thinking. I was thinking that Kelsey would be with the kids her age just like anyone else would. Obviously I'd go with her or teach the class." It took some work for St. Lucy's to help Kelsey figure it out. (Chylene, mom of Kelsey who was born with CMTC syndrome)
The group may be concerned about your child's medical needs. They may feel that they are not equipped to handle an emergency. Have a plan worked out for emergencies before you talk to any group. This way you will answer an objection before it is raised.
If you want an experience for your child that's not available in your community, maybe you ought to begin something new.
I started a summer camp for Kelsey. We have a lot of fun. The camp is 6 weeks. It is exhausting, but I love it. We have about 30 staff and have 65 kids that attend. It's not just for kids with disabilities. Parents hear about it and want their kids to be included. I have the support of family and Looking Upwards--when I went to them and told them about the summer camp, they were supportive. (Chylene, mom of Kelsey who was born with CMTC syndrome)
UNDERSTANDING DEVELOPMENTAL STAGES
All children progress through the same developmental stages. Mental retardation can slow down the stages or may cause development to end at one stage. An occasional child skips a stage. Recognizing the stages will help you understand what behaviors are appropriate for that stage. Books, articles, web sites on child development, and other parents can provide in depth insights. .
Very briefly, some of these stages are:
1. Child is focused totally on self and his own needs.
2. Child learns what behaviors work to get needs met and uses those behaviors.
3. Child begins to see things from another's viewpoint but still sees self as most important.
4. Child begins to make judgements about what is normal and usual based on his own experience. Things that are not normal or usual in this child's experience seem "bad" or "wrong."
5. Child develops limited empathy for others. He begins to understand that experiences other than his may be "normal" to others.
6. Child begins to notice differences in herself and does not like them. Child wants to fit in.
7. Child begins to see parents as repressive, controlling, outdated, unsympathetic, and stupid and turns to peers for understanding and support.
8. Child begins to realize that parents are not as dumb as she thought and that peers are not as smart as she imagined. Relationship with parents becomes more of a mentor/friend relationship than an antagonistic one.
Generally stages 1-4 are those of infants and young childhood. Stages 5-6 develop in pre-adolescence, stage 7 occurs during adolescence and teen years, and stage 8 in young adulthood.
"My mother listened to me and then quietly said, 'I know that thinking about all of those things is very painful right now, but you have to remember that those are your dreams, sweetheart, not hers. Jesse will have dreams of her own. They may not be like those of other children, but they will be her dreams just the same.'"
Talk with your child about his dreams. Brainstorm together ways to make them come true. Persevere in making them happen.
My son Jonny, now 12, is a snappy dresser and an avid movie/Broadway buff, with a repertoire including songs from Phantom of the Opera, Annie, Bye, Bye Birdie and more. He loves people of all ages, but babies make him turn to mush. He has an uncanny way with animals. He loves school, but that doesn't keep him from loving the thrill of snow days more. (Barbara, mom of Jonathan, Jesse, Daniel, and Justin, all of whom were born with Down syndrome)
Your child will realize her dreams if you help. Build your child's self esteem and self confidence. Only by helping your child be as independent as possible, as early as possible, will you prepare him for adulthood.
It's all how you treat it. She does not hide her hand from kids who walk up and ask what happened. When kids say, "Where's your hand?" and ask her what happened, she says, "That's the way God made me." Now she is almost three. She puts her socks on, her shoes, pants, and shirt, combs hair, holds crayons, and paper. She does not like us to touch her hand or give it too much attention, but when it's time for her to roughhouse and play with you she will reach out and will wave with her little hand. (Annalee, mom of Brooke who was born with nodules for fingers and a boneless thumb on her left hand)
Here are some suggestions to help your child realize her dreams.
* Praise your child for jobs well done and efforts sincerely made, even if they are not totally successful. Don't praise for efforts you know are sloppy.
* Create situations that will build your child's self confidence and self worth. Capitalize on your child's talents.
* Even though you could do something more quickly, allow your child to do it so he learns his capabilities. Sometimes this means watching your child struggle while you hold back even though you want to help.
* Avoid the pity pot. Pitying your child won't help her. Respect your child and use her strengths to build her up. Don't baby your youngster or allow her to manipulate you or get away with behavior you'd not tolerate in other children.
* Ask your child's input on decisions which involve him. Implement his ideas as much as is practically possible.
* Overestimate rather than underestimate what your child can do. If you raise the bar, your child may reach it. Try and see without frustrating your child.
* Teach your child personal care skills. This may mean allowing some things to be done less perfectly than you can do them. It also may mean some adjustments such as short hair cuts or using slip on shirts and velcro zippers.
* Give your child chores. Only expect as much perfection as your child can give.
* Within reason, adapt the house to the child, but remember that other family members live there also and that your child will have to live in a society that is not 100% suited to his needs.
* Integrate your child into society. Help her to deal with questions and responses. Teach her how to interact politely with adults. Let her make purchases, order from menus, and negotiate streets as much as possible. Teach your child as many social survival skills as she can learn. These are skills adults need.
* Have your child make friends. You may have to bring your child to other kids or bring them to your child. Teach your child the skills needed to be a good friend.
* Help you child to understand and accept his differences as the source of abilities and insights other kids don't have. Help your child share her talents with others.
* Encourage hobbies and special interests so that your child uses leisure time wisely. These could become hallmarks of recognition and sometimes of income.
* Incorporate some structure into your life. Schedules work well, even if you can't always meet them, because they keep you focused and help your child anticipate what is coming next.
* Think radical new thoughts. Society has set certain educational goals for every child. Maybe your child can meet them. Maybe not. Brainstorm ways to develop skills your child has. If society expected everyone to be auto mechanics, lots of us would be failures.
* Allow your child to make choices and then take responsibility for them. If the choice was good, the child will obtain the rewards. If poor, the child will suffer consequences which he needs to deal with himself. We mature by making decisions and then living with their results. Being self determined is more important than any functional ability.
* Foster a sense of humor and perspective in your child.
* Do not allow others, including grandparents and other relatives, to pity, coddle, excuse, or belittle your child. Expect them to treat your child as you do. Don't accept any other behavior.
* Support your child's dreams. Instead of thinking and saying that your child could never achieve her fantasy, say and think, "If you really want to do that, we'll look for a way to make it happen." Most outlandish dreams fade with time, but the do-able ones persist. Your child will understand better than you do what is do-able for her.
I see him working towards his dreams of becoming a veterinarian. He speaks of college, of a family of his own, of being on his own one day and not having his mom tell him to clean his room. Nick is a pretty average young man, with an above average spirit. (Ashley, mom of Nick who was born with spina bifida)
Aim for full inclusion of your child into society. National disability organizations can refer you to laws which will help your child be part of the mainstream.
School can present problems. Teachers may not know how to deal with your child's needs. You may have to educate the teachers and other school personnel about how to treat your child.
Kelsey went to a school for children with disabilities until she was ready for kindergarten. Then she went to public school. She definitely paved the way for kids with very significant disabilities. When she first started school, she had to use oxygen and suction which made people nervous, but once they got over their fear, they were fine. Then there were field trips. I always say, "Kelsey should be treated just like any other child. If the kids in her class go on field trips, then Kelsey should go on field trips." They realized that Kelsey could be part of the class just like the other kids, and how much the other kids actually learned from her (Chylene, mom of Kelsey who was born with CMTC syndrome)
School personnel may assume that physical differences indicate mental lacks. They will have to learn to think otherwise.
Before Jessica started school, she was scheduled for an IQ test. I asked, "Do they test every child before they start school?" "No," I was told, "only the ones whom they think will have learning disabilities." They tested Jessica, and she tested out much smarter than average. (Patricia, mom of Jessica who was born with limb deficiencies of both arms and both legs)
Children with special needs ought to be given an IEP (Individual Education Plan). This ought to address the needs in specific terms with specific time frames. It should also tell who will provide what services to meet the needs. Parents are to help write the IEP and must approve it before it is implemented. You ought to also be invited to staff meetings. Take along an objective friend or relative so that you are not unnerved by the array of professionals. Listen. Be polite. Be assertive but not aggressive. Admit that the professionals have knowledge that you don't have. Try to understand where they are coming from. But do no allow them to intimidate you. You are a professional, too! Nobody knows your child better than you do.
Having a child with Down syndrome has helped me see there's infinitely more to life than intelligence, beauty and "perfection." It's also taught me that not everything can be measured in dollars and cents - the benefits of full-inclusion extend beyond a child with Down syndrome to his classmates, teachers, family and friends. (Barbara, mom of Jonathan, Jesse, Daniel, and Justin, all of whom were born with Down syndrome)
Consider yourself your child's case manager. The case manager has the greatest say in how the school system treats a child. Advocate for what your child needs. See that the learning environment is maximized for your child. If you don't understand something, ask. If you don't like something, say so. If your child needs more services, request them. If you question test results, ask for a re-test or schedule an independent evaluation. Be completely comfortable with the IEP before you sign your approval. Then follow up on the IEP and be sure that what is written is actually being done. If it isn't, schedule a meeting with the school and discuss what changes need to happen. If you still don't get satisfaction, take legal action. A lawyer can advise you.
When Kay-Marie entered high school, I home schooled her in academic subjects while she took specials at the high school. I would meet with her high school team to go over her IEP (Individual Education Plan) and share with them what we were doing at home. The school saw me as part of Kay's educational team. I submitted to them a list of texts we used (some of them given us by the high school at our request), goals, and evaluation means at the beginning of the school year. At the end of the year, I gave the school samples of her work at home as well as her major exams and book reports. (Madeline, mom of Kay-Marie who was born with two lower limb deficiencies and other special needs)
Schools tend to look at what a child can't do rather than what he can do. Talk to the school system to be sure they are giving your child the best.
At home or school or church, Jonny is the first to offer help, to comfort someone who's down, and to laugh uproariously at the punch lines. His preschool teacher named him Ambassador of Goodwill. His public school kindergarten teacher, after 30 plus years of teaching, said she'd never seen children as loving and caring as Jonny's classmates. The secret, she said, was Jonny. In fact, I bet some people would rather spend a day with Jonathan than with the experts who comment on his right to exist. (Barbara, mom of Jonathan, Jesse, Daniel, and Justin, all of whom were born with Down syndrome)
If you notice a problem, go to the school with a solution. If you don't have a solution, define the problem in this way: What would it take to _________( the goal you want for your child)? Brainstorm solutions with school personnel.
Consider the school system a partner. Negotiate if necessary. If one school system is not cooperative, you may be able to enroll your child in another. Once a school begins to work with your child, they may find that gratitude has replaced their fears.
If Ben had not lived, his friends would not know him, the school’s culture would be different and something less than it is now. Our community would be less bright and less humane. His sister’s view of the world might have been more narrow. I would not know the people I know today. Ben enjoys his life, loves his family and appreciates every day. He wouldn’t want to miss a single beat. (Terry, mom of Ben who was born with multiple disabilities)
For some children and families, home schooling is the best option. Lessons can be paced to meet the child's needs. Parents can spend more time on difficult subjects or can use alternate teaching methods. They can choose their child's friends from other home schooling families, and generally those children are quite accepting of differences.
If you home school, cooperate with the local school system. Most school systems want a letter of intent to home school plus an outline of the year's curriculum, including texts, tests, and goals. Meet with school officials and let them know your plans. Be prepared for convincing arguments and promises aimed at having you change your mind, but stick to your guns. Let the school system know that you feel home schooling is best for your child, but add that you will keep them informed of what you are doing. Then do it! Turn in to the school system copies of major exams and reports. Each year request a meeting to update school officials on your child's progress. If you wish your child to re-enter the school system, your child's achievements will be well documented, and the school will know that you are a cooperative and responsible parent.
When we adopted Kay-Marie, she was almost seven years old and still did not know all the letters of the alphabet. We enrolled her in public school kindergarten. However, with her entering puberty early and dealing with learning difficulties, Kay Marie was forming the opinion that she was bad and stupid. Wishing to avoid a self fulfilling prophecy, I did what I once swore I would never, ever do. Home school my kid. We began home schooling in grade four, with an approved curriculum, a special education consultant provided by the curriculum company, and the full cooperation of the local school department. We linked up with two home schooling parent groups so that Kay-Marie would have contact with her peers. When Kay entered ninth grade, we enrolled her in the public high school and worked with the guidance counselor, special education department, and school supervisor to create a curriculum in which Kay took specials at the high school but continued to be home schooled in academic subjects. She did very well. Upon graduation four years later, she enrolled in a six month floral design school. (Madeline, mom of Kay-Marie who was born with two lower limb deficiencies and other special needs)
Perfect families and perfect children do not exist. All parents get frustrated and every child is difficult to raise in some way. Accept your limitations and those of your spouse and children.
Every child finds something specifically objectionable about each brother and sister. If children don't complain about your special child's limitations, they'll find something else to object to. Children may think that, if their sibling had no disability, she would be the perfect playmate. This is a fantasy.
Most children think that siblings get more attention or better treatment than they do. Siblings are often jealous of one another and compete for parental attention. Your child with special needs will compete, too. She may use the disability to gain favor or attention. Other children may invent or exaggerate problems to combat parental concern for the sibling.
You won't eliminate sibling rivalry, but you can minimize it. Here are some tips:
· Keep the child with a disability from becoming the focal point of the family.
· Try to spend as much time as possible with each child.
· Do things together as a family.
· Have a weekly "date" alone with each child.
· Find, foster, and praise each child's special talent, especially in the presence of others.
· Treat the kids the same. Punish and reward them the same.
· Give each child chores.
· Don't treat your special needs child with kid gloves
· Don't compare one child with another.
· Establish rules and enforce them.
· Respect your children's desire to not always be attentive to the needy sibling.
· Don't make one child the slave of another.
· Allow your children to participate in sports, clubs, artistic endeavors, and other recreational pursuits. Driving children to events can be tricky, but perhaps you can car pool or arrange for another parent to pick up your child.
· Begin a club in your home.
· Don't unconsciously try to have another child compensate for the child with the disability.
Let your kids be themselves. Some siblings will spend a great deal of time ministering to their brother or sister, but thinking of them as little saints is unfair. Allow them to express negative feelings and to relax their ministrations without feeling guilty. Other children will complain about nearly everything they "have to do" for their sibling. They may act out to get your attention. Resist labeling these children as "bad" or "selfish." Both saint and sinner are competing for parental love and affection. Every day determine how you can show that love and affection to all your children.
Foster play between your children by praising them when they play well together. Use toys that lead to interaction. These include balls, blocks, puppets, bean bags, tinker toys, bowling, tea sets, costumes, plastic food, balloons, dolls, cars and trucks, marbles, and toy telephones. Activities that foster sibling interaction include acting out stories, playing ___ (school, house, policeman, fireman, doctor, dentist, rock star, fantasy figure, space hero, a type of animal, etc.), fixing simple snacks, singing, interactive sports (baseball, ping-pong, video games, fantasy games, cards, table games, dominoes, checkers, frisbees), marching, tag, hide and seek, taking a walk.
All his siblings loved Joey and treated him well. His two year old brother had a special bond with Joey and tried to make him smile and laugh by acting goofy. We used to put wigs on Joey and dress him up and enjoy him. He was in the family room and slept on the couch so he was in the middle of everything. (Erin, mom of Joey who was born with Trisomy 18)
Your attitude toward your special needs child will influence how your other children view him. Being positive pays off.
We are stronger spiritually, our children are more compassionate than their peers in general, and our family is stronger and more tightly knit than most families I know. Our kids are now 21 and 26, and they have a compassion that is unusual, especially for their age. Of all their friends, they say ours is the healthiest family. I think having Nathan in our midst helped a lot, but I think we also probably handled it right because I know some other families have fallen apart when they had a disabled child born to them. Part of it is our faith—knowing that God loves us and that everything that has happened has been part of a greater plan. And part of it is probably my personality—I just tend to find the bright side to most things, and I’ve helped our kids to see things that way overall.(Jennifer, mom of Nathan who was born with Menke's Disease)
Beware of being overprotective. Overprotecting children gives them the disability of unnecessary dependence which hinders a person forever. Letting your six year old play alone in the back yard or your eight year old wait for the bus alone does not mean that you are neglectful or taking chances. It means you are allowing your child to mature and trusting him to make good decisions.
When our twins were born, Marie was fine but Tina had no hip on one side and only a partial thigh on the other. Doctors told us that she would never be able to sit up by herself, so they made her a sitting prosthesis when she was three months old. After using it for three weeks, she was sitting up by herself. The doctors said that she would never be able to walk without crutches, but she learned to do that. Today Tina is married and working as a Children's Museum Coordinator. She wears a bucket prosthesis and lives a very normal life. What a child can achieve is very much an individual case. It also depends on what the parents will allow the child to do. We had a five year old and a three year old son when Tina and Marie were born so it was difficult to be protective of one when we had the other three. Tina learned to take her lumps, and she did well because of it. (Gloria, mom of Tina who was born with lower limb congenital amputation)
SHARING WITH YOUR CHILDREN
Let your children know that they can discuss anything with you, even their negative feelings. This is especially important for older children who may not want to upset you. Help your children understand that feelings are not right or wrong. They express emotion and ought to be openly dealt with. If your children do not discuss feelings with you, they may seek out friends who may have much misinformation. Or they may never air their feelings which is emotionally damaging in the long run.
If your child seems unconcerned about her differently abled sibling, do a little emotional "digging." Your compliant child may not want to worry you while inside she may be fretting. Making up a story can sometimes open communications. One possible story appears in Appendix F.
Children often have many questions. What is wrong with my brother? Why did this happen? Is my sister in pain? Will this happen to me? Why does she act so strangely? Does he love us? Will she ever be able to ______? What am I supposed to do with my sister? Will my brother die? Be honest and truthful. Explain the situation in terms your kids can understand. Children can accept more than you realize.
You may be able to find some children's books on a particular disability. Read the books before sharing them with your children to be sure that the attitudes in them are the ones you want to foster.
How you respond to your children either fosters or hinders communication. Foster communication by asking a question, not issuing a command or reprimand. Compare these different responses to the same comments.
Johnny: I can't stand it when Jane moans like that.
Mom: (response that shuts down communication): You shouldn't feel that way. She can't help it.
Mom (response that fosters communication): I know it is troubling. Jane's moaning bothers me, too, even though she can't help it. What do you think we can do to help her and us?
Sara: I hate Billy.
Dad (response that shuts down communication): What a terrible thing to say! He's your brother!
Dad (response that fosters communication): I'm glad you shared that, Sara. Why do say you hate Billy?
Marie: You like Peter better than me.
Mom (response that shuts down communication): I certainly do not. I love you both the same.
Mom (response that fosters communication): What makes you think that I love Peter better than you, Marie?
Siblings often have good advice. Discussions with them may spark suggestions to make things more comfortable. Older siblings may want to be part of meetings with professionals or may wish to teach their special sibling certain skills. Encourage these things.
Be very careful not to minimize problems by comparing them to what your child with a disability can or cannot do. Every problem is important to the person experiencing it.
Justin: Why do you always make peas, Mom? I can't stand them.
Mother (response that shuts down communication): What are you complaining about? Laura would love to eat peas if she could.
Mother (response that fosters communication): Everybody has foods they don't like, but it's good to try all kinds of foods. Tomorrow I'll make corn. You like that better than peas, don't you?
Gracie: Dad, I have to have those sneakers. Everybody has them. Pleeease. Everybody thinks I'm a dork because I have to wear these dorky shoes.
Dad (response that shuts down communication): Can't you see we are in the middle of a crisis with Sam? Why are you worried about a pair of sneakers when your brother can't breathe right?
Dad (response that fosters communication): Oh, Gracie. I want to talk to you about those sneakers. But your mom and I are trying to get Sam breathing right again and we have to do that first. How about if you go and find an ad with what you want and we can talk just as soon as we know Sam is OK?
If a sibling has an especially difficult time dealing with a brother's or sister's condition, consider professional counseling. While the phone book can provide referrals, the best ones generally come from other parents. Hospitals or places of worship may be able to recommend local parent support groups or individual parents. Your child may benefit from attending a sibling support group.
If you think a child is manipulating to gain attention or favor, try to find out if your feeling is correct. One easy way is to try to distract the child from the complaint while providing attention to the child. A child won't generally be distracted from a legitimate complaint.
Mother is in the midst of trying to feed four year old Jerald who cannot feed himself.
Amanda: Oh, my stomach hurts, Mommy. Ooooh. I don't feel good.
Mom: I'm sorry to hear that, Amanda. Oh, I just thought of something. Aren't brownies your favorite? How would you like to help me make some for dessert?
If Amanda really has a stomach pain, she is going to say she does not want brownies; she wants her tummy to stop hurting. Mom ought to then check Amanda. If Amanda wanted to take mom's attention from Jerald, Amanda will be excited about the brownies. Mom can instruct her to get the bowl, pan, and spoon ready while Jerald finishes his lunch.
YOUR CHILDREN'S FRIENDS
A child with a disability can embarrass siblings if the parents try to keep the child out of the public eye. . Take the family on outings. Help your children understand that those who make fun of folks with differences are to be educated and maybe pitied.
Have friends over to play with your other children and explain the disability to them. Tell them how they can help. Point out something, such as a smile or a liking for certain foods, which shows how much your child is like other children.
Work with your children's teachers to bring your differently abled child to the classroom to help educate the youngsters. The teacher can prepare the class and you for this interaction. Have classmates interact with the special needs child. Explain what the child can and can't do. Obtain beforehand the names of children who are most likely to bully or ridicule and have them do something positive with the child. Praise them for their efforts. The goal is to have schoolmates see the differently abled child as a person and to understand that bullying or making fun of a person is something no child would ever want to do.
As my son Matt said when Jonny was a just a toddler: "Wouldn't the world be a better place if everyone had a brother with Down syndrome?" (Barbara, mom of Jonathan, Jesse, Daniel, and Justin all of whom were born with who was born with Down syndrome)
YOUR CHILD AS AN ADULT
As your child matures, allow her make decisions according to her maturity level. Teach him to be as independent as possible. Integrate your child into the world. Provide the training she needs to be successful. Have him do things for himself. Speak to lawyers and other professionals about trust funds, housing, social services, and financial aid. Appoint a guardian for your child should you die unexpectedly. Draw up legal documents for the disposition of your estate as it relates to supporting your child. Share with your other children any long and short term plans your make. Siblings have a right to know how responsible they will be in the future for their brother or sister.
It's been really hard to think about Kelsey getting older and getting a place of her own. At first, I thought, "I could never do that--let someone else take care of her." But we have some other friends that also have children with disabilities, and we are looking at buying a house together and then the agency would help us to support the kids because we can't expect the state to take care of our kids forever. If we don't do something, then we may not have a lot of choice about where our kids live. We really want Kelsey to stay in this community because this is where.people know her, where her friends are. If we get some families together to buy a house, then the state will help us to provide supports for our kids as they get older. The biggest expense for supporting our kids is hiring staff. Kelsey needs somebody around the clock. We have actually started a corporation. It's a little bit scary, but you have to do it. (Chylene, mom of Kelsey who was born with CMTC syndrome)
When Christopher was about twelve, I began thinking about his future. The Sisters of Mercy operate a home for the mentally handicapped. Christopher can be put on a waiting list and we would be just as proactive in his care if he were accepted into the home. (Mary, mom of Christopher who was born with multiple disabilities)
Your young adult may have sexual feelings and thoughts even if he cannot express them or would find it difficult to function sexually. Everyone has a need for affection and love, and these needs can mature as sexual attraction. Communicate with your child about her feelings. Explain pitfalls and sexual predators in terms your child can understand. Your young adult will have to learn to handle her own sexuality, but your instruction will provide the guidelines.
I'm 29 now, have just had my first baby, who is perfect! I live life fairly normally, although typing is a little trickier for me than most!! I have a great family, loving partner (Kirsty who was born with deformities of the hands and feet due to amniotic band syndrome)
When your child enters the world of adulthood, he or she will be well prepared because of you.
 Ann Waldrop, "Dreams." You Will Dream New Dreams by Stanley Klein and Kim Schive, Eds. New York, New York: Kensington Publishing Corporation, 2001, p. 113.
CHAPTER 9--THE GIFT OF YOUR CHILD
For it is in giving that we receive. -- Francis of Assisi
Ready to Begin
Michelle and I were walking,
In amongst the trees, the birds, the animals
And the grasses swaying in the wind.
I felt you so close, Stephanie.
I've always felt you in nature.
But this time it was different.
I felt you intertwined with me.
I finally felt some of the peace,
That I was told would come again.
For the FIRST time I could imagine
The next baby.
You weren't being forgotten,
I could feel you knew that.
I felt so close to you.
Michelle and I discussed bringing the next baby
To our favorite spot,
All cuddled in a baby sling.
That was last week.
My health has returned thanks to natural remedied.
I still feel that small amount of inner peace.
I still feel your presence very close to me.
I guess this means one thing, my sweet baby.
I am ready to begin.
Ready to begin the process of starting a new life.
Thank you, Stephanie for staying by your Mummy's side.
You are helping me to begin again.
You, your big sister Michelle, and your Daddy.
-- Bernadette Zambri, May 17, 1993
Whether your child lives briefly or has a longer life, you, by giving birth to your child, will have given your child the gift of his or her life and of your love. Memories will surround these gifts.
You will face many anniversaries. Anniversaries are times to write a letter to your child or to create a poem or memento, to plant a tree, or to make a visit to someone who might be lonely. Particularly if the anniversary is painful, allow yourself the full range of emotions but also work to bring good out of the pain. In this way, healing will come.
Gianna Christe Mariolina
Our baby Gianna was born,
On December 29, 2003
Our hearts were naturally torn,
When she died at p.m. 6:03.
But we knew when she closed her eyes,
She would open them up yet again;
To be happy forever in paradise,
Which has been hoped for by women and men.
On that night my family and I,
Let our hearts and our tears be shed.
Our smiles were watery, few eyes were dry,
When we remembered the thought she was dead.
But not dead, do you see?
She is alive and awake.
She is happier than you and me.
But when I think of her my heart will still ache.
I know that my family has a private saint.
We can ask her to help us in troubles.
We can pray to her while we work, paint,
Rake, sing, and even when we're blowing Bubbles.
by Alayna Nagurny (age 11) on the anniversary of her sister Gianna's death (12/29/04) (Gianna was born with Trisomy 13 and holoprosencephaly)
One anniversary will be the date of the prenatal test which revealed your child's condition. You may relive all the pain and confusion of that time. Look at the ultrasound photos and any other mementos you may have. If your child has died, visit his grave. If your child is alive, do something special with her. If your child is living elsewhere, visit if you can, or make a phone call to the adoptive parents or institution. Give a gift in your child's memory. Or host a party or fund raiser for those in need. Create positive memories for what you may have viewed as the worst day of your life.
Other anniversaries will be the date of your child's death, or surgery dates, birth dates, or dates associated with other parenting choices. Holidays will bring their own memories. Mothers' and Fathers' Day can be especially difficult if your baby has died. Remember that you are always a parent and celebrate your special day.
Don't be surprised if strong emotions surface at apparently insignificant things. Certain weather patterns, sights, sounds, smells, places, and even everyday chores can trigger memories. Embrace the emotions for as long as they last. Healing comes through these times.
You may feel pain over what might have been but was not. This does not mean that you are a bad parent who does not love your child. It means you are a normal parent who wants your child to have a perfect, happy, painless existence. All parents come to realize that this desire is an illusion. Whatever children we have, we move forward in love despite the imperfections and the pain.
Parents often want additional children, but future pregnancies can be scary. If your child died, will a future pregnancy cause you to cherish that child less? Probably not.
He was my pride and my joy, and he changed my life forever. He has deepened my faith, given me hope, and left me with such wonderful memories. Since then, I have had two more children, a boy and a girl, who are both in perfect health. But I will not ever forget my beautiful, precious Tanner. (Renee, mom of Tanner who was born with Posterior Urethral Valves)
Will you have another child with special needs? Will having a "normal" child make me love less the child I have now? Is it fair to our child to want another? Will we have time to care for our child with a disability if we have another baby?
In June, Celine became a big sister to Genevieve. Having a "baby" to focus on has helped our family to move beyond Celine's heart defects. (Monica, mom of Celine who was born with hypo-plastic right heart syndrome)
But when I became pregnant with our 3rd child, Matthew, I was seriously frightened. We had prenatal testing done. We didn't get the results until about 3 months before he was born. Not that we would have ever considered abortion, but we wanted to know so we would be prepared and could start treating right at birth if he was sick. He was born perfectly healthy, praise the Lord! (Jennifer, mom of Nathan who was born with Menke's Disease)
Our children were really young. I didn't tell them that the baby was going to die, and, when Andrew did, they were really sad. I got pregnant quickly