Where We Going, Daddy__ Life With Two Sons Unlike Any Other - Jean-Louis Fournier [0]
Our second child, Zachariah, a much wanted son, looked perfect at birth. Most caesarean section babies do. As an infant, he had big blue eyes with long fringy lashes and downy blond hair that later grew into golden curls. But in the months following his birth, I noticed that he never held up his head; he didn’t quiet when we came into the room and spoke in comforting tones. The tests to determine what was wrong began when he was around six months old and continued until he was more than three years of age. My son’s first few years had passed without his reaching any normal developmental milestones: Zachariah did not hold a spoon, sit up, or say “mama.” I didn’t know it then, but he never would.
In Iowa, where we live, we get tornados. Once, when Zach was still at home, there were warning sirens for everyone to take cover. It was early evening when the tornado alarm sounded; Zachy was fast asleep, but the wailing sirens woke Gabi, our six year old. My husband found a flashlight, and the three of us stood at the top of the stairs for a moment as I looked at Zach’s closed bedroom door. He was difficult to get to sleep and fretful all the time he was awake unless he was rocked and soothed or taken somewhere in the car. Often I drove him around in the car at five in the morning until it was only me who was crying. “You’re going to take Zach down to the basement with us, aren’t you?” Gabi asked, her eyes wide. Of course, of course.
It’s natural for parents to love their children, but when you have a severely damaged child whose needs suck up all emotional reserve, whose future will never hold the pleasures of the most ordinary imagination, then love is the least of it. Truth be told, parents of damaged children sometime fantasize about the loss of our child in an instant, painless scenario. We can imagine a tornado tearing off the roof of a house and swooping a sleeping child into a peaceful land of Oz.
Parents of severely handicapped children do have dark thoughts. Most of the time we do not say them aloud, especially in a society that works to accept differences and sometimes canonizes the parents of “special” children as unselfish, strong, courageous. Americans in particular can be sentimental: our handicapped children are “angels”—sweet and innocent. They’re needy, yes, but so very worth our sacrifices. Well-meaning people occasionally sent me the poem, “God’s Very Special Child,” whose couplets convey the message that we parents were even “chosen” by God:
And soon they’ll know the privilege given
In caring for their gift from Heaven.
Although Americans are sentimental, we are also a practical lot who possess that “can-do” spirit, even toward the most limited of our population. Why else the push to “normalization,” real jobs and independent living? Why else the cheering success of the Special Olympics?
Sentiment and practicality are not the primary themes of the book you are about to read. The author, Jean-Louis Fournier, is the father of not one, but two, severely handicapped children. Two, we are told on the very first page of Where We Going, Daddy? How can your heart not sink into your shoes? Fournier begins with a letter to his sons, Mathieu and Thomas, a letter in the form of a book that his boys will never be able to read. We see the boys always through Fournier’s eyes. His sons disappoint. They make him feel guilty. As they grow older, they are not lovely to look at. The book is an apology of sorts to his sons for their very existence, for Fournier’s own genetic contribution, which resulted only in “getting you so wrong.”
Where we going, Daddy? is the question asked over and over and over again. Fournier gets exactly right the mind-numbing boredom of doing the same things and eliciting the same responses from a child who—except for his shoe size—does not grow. He captures perfectly the irritation, envy, and yes even rage that parents of handicapped children sometimes feel toward parents of the “normals”—parents who are ignorant of and oblivious to their own mundane good fortune;