||Volume 22, Number 7, May/June 2010
The Boy in the Moon: A Father’s Search for His Disabled Son
By Janet Nicol
When Ian Brown completed this award-winning book in 2008, his severely disabled son Walker was 12 years old. He and his wife, Johanna Schneller, also a writer, had lived through eight years of raising Walker at home and much of those eight years were grievous and painful. Finally giving up, the couple moved Walker into a nearby group home in the Toronto area, ensuring Walker continued regular overnight visits with family twice a month. Brown, who also writes for the Globe and Mail, kept a diary of these times, (originally for medical purposes) and has mined the results into an exceptional father and son story.
Walker Brown was born with a genetic mutation so rare that doctors call it an orphan syndrome, with only about 300 people around the world who live with it. Walker cannot speak and must eat with the assistance of a device. He also habitually hits himself so has to wear protective gear. But as a toddler, he does learn to walk and while intellectually delayed, at some level, Walker feels, desires, and connects with others. By the last page of this story, the reader has as much affection for Walker as his family, his caretakers, and many special friends.
“Sometimes watching him,” Brown writes, “is like looking at the man in the moon—but you know there is actually no man there. But if Walker is so insubstantial, why does he feel so important? What is he trying to show me?”
Every burning question a parent, educator, or special needs expert may have is answered somewhere in this highly readable exploration of Walker and his unique world. Brown moves back and forth in time as he ponders, investigates, researches, and visits other families with similarly afflicted children. He offers glimpses into the life of his wife and to a lesser extent, their first-born daughter, Hayley, as well as extended family and friends, all in aid of understanding his son’s extreme condition. Another star performer in this story is Olga de Vera, the Filipino nanny hired to perform the normal duties of a nanny with Hayley and who stays on to embrace Walker with remarkable dedication.
Brown gives us the small details—the grinding daily (and nightly) routines of parenting Walker and occasional moments of joy and grace. He is also able to pull away and paint the bigger picture, resulting in several insights—and more questions.
Tension in the marriage is duly recorded: “We have our private moments, our intimacies, but they are so rare and so urgent they’re like hallucinations,” Brown writes. Walker doesn’t always unite the family as one might think, he observes, he “scatters us.”
The author monitors the Internet, a connector for thousands of parents with disabled children. It is the “daily bread of the listserve” where Brown reads “habitual discussions” about cleaning and feeding children with special needs as well as sharing of medical and other advice.
“Sometimes Walker was in agony as he smacked himself and screamed with pain,” Brown observes, in one of his many heart-wrenching passages about his son’s condition. “At other times he seemed to do it more expressively, as a way to clear his head, or to let us know he would be saying something if he could talk. Sometimes—and this was unbearably sad—he laughed immediately afterwards. He couldn’t tell us anything, and we had to imagine everything.”
Medical professionals (including Americans) give the couple as much assistance and expertise as possible, but it is apparent there are still so many question marks in this field of human knowledge. The medical and caretaking costs add up for the family too, another topic Brown considers vital to public discussion.
The author is generous and grateful with his praise for all those who are able to help Walker, some who give in simple, unconscious ways, illuminating the many pools of kindness in the world.
But Brown is also unflinching in his examination of the dark side of this underworld that fate has handed him. For example, he discusses his own inadequacies when he appears in public with Walker. “The staring used to bother me,” he confesses. And from the reactions of people on the streets of Toronto as he pushes Walker in the stroller, “I have known what it is like to be stared at, to be an object of fear and pity and even hatred. I hope Walker can’t see it; he seems to ignore it, and gradually he taught me to ignore it as well.”
Brown searches for reassurances about Walker’s future, that inevitable time when he and his wife won’t be able to watch over him. He travels to France and visits L’Arche, one of the world’s most progressive environments for disabled people, run by Jean Vanier. The community reveals a unique place of hope and pushes Brown to reflect further on his own values and beliefs.
There are not many air-tight conclusions by journey’s end, but Brown and his wife do come to realize it takes a team to look after Walker’s many special needs, so surrender their son to a wider network of support. This may be an obvious observation to outsiders, but a very painful and difficult decision for the family, as the author reveals.
Brown also builds a convincing case for more public support of parents coping with a disabled child. In his family’s case, it took a very long frustrating search to find an appropriate group home in Toronto for Walker.
The book ends, but the life of Walker goes on. “He is becoming a different boy there, in his other house,” Brown notices. He hadn’t anticipated Walker to have an independent life. “The latest development, the workers in the house tell me, is that he shouts “Bus bus bus!” when it arrives. I find that hard to believe. But there have been other shifts too, subtler changes in his current.”
The Boy in the Moon succeeds in elevating our understanding of disabled people and their families and is a valued resource for educators and other specialists. Ultimately, this is a story for everyone, as any great story is, because we learn so much more about our capabilities, despite our limitations.
Janet Nicol teaches at Killarney Secondary School, Vancouver.