PREFACE

 

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.

 

Kathie Snow

Parent, trainer, and author of Disability is Natural: Revolutionary Common Sense for Raising Successful Children with Disabilities

Woodland Park, Colorado

May 16, 2007

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