By Jesse Marx
By Chris Parker
By Jake Rossen
By Jesse Marx
By Michelle LeBow
By Alleen Brown
By Maggie LaMaack
By CP Staff
Changed by a Child:
Companion Notes for Parents Of a Child with a Disability
by Barbara Gill
Published by Doubleday, 1997
"You're so smart!" I am beaming at my son, who has just transferred three blocks from the floor into a plastic bucket.
Others hearing my proclamation might question my judgment. My son is seven years old and is profoundly retarded. It is highly unlikely that I will ever hear an expert call him average, let alone smart. Furthermore, I suspect that any psychiatrist within earshot would immediately prescribe a dose of the pharmaceuticals currently being recommended for delusional behavior.
But, I make my statement with an intimate understanding of the constraints imposed by my son's disability. Where others see difficulty, I see determination. I can see the glass as half full rather than half empty, though this wasn't always so.
The diagnosis of my son's chromosome disorder initially left me devastated. I had pictured my life differently, and I spent a great deal of time angry over the cosmic error that took place at my expense. Yet, as time passed, I learned that my son adored vanilla custard, he loved to be tickled, and he looked marvelous in blue; affection diminished the intensity of my anger and, eventually, I abandoned the assumption that I was entitled to what I had expected. My life was unquestionably difficult, but accepting these difficulties precipitated a change in perspective that marked a turning point in my personal growth.
The notion that embracing our fate can lead to spiritual growth is one of several themes that resonates through Barbara Gill's book: Changed by a Child: Companion Notes for Parents Of a Child with a Disability. The book presents a comprehensive series of brief, inspirational essays that reflect on the emotions and experiences that characterize the lives of parents of a disabled child. Gill, whose son has Down syndrome, demonstrates empathy, insight, and vision in these passages, qualities clearly born of experience.
The book is divided into three sections: "In the Beginning," "Rounding the Curves," and "Transformed." After reading the first section I longed for a copy of the book to give to the woman I was seven years ago--a devastated new mother, aching for someone to tell her that life was not over. Gill validates the feelings of isolation, anguish, and hope, which characterize this period, and provides gentle inspiration to suggest that life is not over, only different. The beginning is only the first stage, perhaps the most difficult of many stages to come. The second and third sections of the book contemplate these latter stages in which reflection replaces grief, and parents ultimately "come to a new place where they discover that they have been opened to love and transformed." Although the contents of the book are directed at parents of disabled children, there is something here for all parents: topics for reflection include letting our children go, learning to shape our attitudes, and maintaining perspective. Yet Gill never loses sight of the intensity that characterizes life with a disabled child, and throughout the text she provides encouragement to reflect and use the difficulties as an impetus for growth.
Finally, Gill provides a broader perspective. Parents of disabled children must live in a society that views their lives as tragic. Yet many parents share Gill's experience: "that out of pain, sorrow, disappointment, and failure are forged growth, power, strength, and love." She presents a gentle vision of a society that sees this experience and these children as their parents see them, a society in which all individuals are graciously included. Ultimately, she provides inspiration for parents to use their experience to show people that their assumptions about life with a disabled child are not necessarily correct.
Shortly after finishing Gill's book I had a dream in which a small child wanted to teach me to fly. There were no wings involved in this flight-it was dream flight and took place using sheer will. The child took my hand and we leaped from a second-story window. Initially, I was terrified, but eventually I relaxed and became overwhelmed with wonder that such a thing was possible. After we landed I ran to tell others of my experience, that I could fly with this child, that we could all fly by just holding his hand. They assumed I was deluded and readily dismissed me. I was devastated that they could not see what I could see, what was right before their eyes.
But this is my life. Raising my son is often painful, frustrating, and, initially, it was terrifying. Yet these emotions have allowed me to stretch my vision. I can see, now, what we can become, and I am in awe of the growth that is possible. I, like Gill, have been changed by a child. Now all that's left is to convince the world that I can fly.
Tracy White is a writer living in Cumberland, Wisconsin. This is her second contribution--of more to come--for Minnesota Parent. Her essay "A Brother's Gift" appeared in the September, 1998 issue.