The Boy in the Moon : Summary : The Boy in the Moon StoryTuesday, January 17, 2012Atishay Jain
The Boy in the Moon: A Father's Search for His Disabled Son
They are father and son. They communicate in a private language composed entirely of clicking noises. The parent is veteran Globe and Mail feature writer Ian Brown; the child, his young boy Walker, whose abilities are almost unimaginably impaired because of a rare genetic mutation. In a humble and flawless new memoir, The Boy in the Moon (based on a series of articles that originally ran in the Globe), Brown recounts his journey to try to understand his son, who by the age of 13 had the mental capabilities of a three-year-old.
As one of only about 300 people on the planet with cardiofaciocutaneous syndrome (CFC), Walker has an unusual facial appearance, no ability to speak, and a compulsion to punch himself in the face until he screams in pain. Extensive effort is required to feed him, change his diapers, or remove the growing boy from his crib. With the help of a superhuman nanny, and while working full-time, the Browns raise Walker themselves for the first eight years of his life, before finally placing him in a group home with full-time nursing staff.
How can one comprehend a life such as Walker's? To answer that question, Brown traverses the continent and scours the Internet to uncover a disabled diaspora consisting of families of CFC kids. Despite the random origins of the condition, a consistent theme among affected parents is self-blame. But another is the enhanced sense of empathy and patience wrought by their intense care-giving experiences.
Hauntingly, the biggest worry is most often, who will take care of our child when we eventually die? The author, a confirmed atheist, finds one answer at L'Arche, an international network of faith-based communities centered on adults with developmental disabilities.
Throughout the book, Brown's prose is honest, self-critical, poetic, and moving. While offering a broader philosophical critique of society's conception of disabled people, The Boy in the Moon is ultimately a painful yet joyous account of an evolving relationship of mutual love and dependency. As he lets go of the notion of his boy as "unfixable," Brown is able to calm his own self-doubt and accept Walker exactly as he is. In tandem, neither of them is broken.
At night, Ian Brown’s 8-year-old son, Walker, grunts as he repeatedly punches himself in the head and ears.
His face is distorted, with an over-large brow, sloping eyes and a thick lower lip. He cannot speak. He cannot eat solid food, and takes in formula through a tube from a feedbag powered by a pump. The tube runs through a hole in his sleeper into a valve in his belly. When Walker’s own punches begin to awaken him, his father must disconnect the tube and lift the 45-pound boy out of his crib, carry him down three flights of stairs and try to coax him back to sleep. He also must change Walker’s ballooning diaper, as the boy is not toilet trained, and prevent him from smearing excrement everywhere. He then feeds him a bottle and tiny doses of Pablum. The kitchen is covered with the film of Pablum dust. Brown’s tasks are performed as quietly as possible so as not to disturb his wife, Johanna, and Walker’s older sister, Hayley. In the first eight years of Walker’s life, neither parent slept two uninterrupted nights in a row.
Brown begins “The Boy in the Moon” this unsparing way because he wants to fling us into his story, alongside him and his family, and because as a writer he knows that an account of the plain facts will bring us to our knees more efficiently than a dressed-up version. Walker (the sad irony of the name) was born with cardiofaciocutaneous syndrome (CFC), a genetic mutation so rare that just over 100 cases have been reported worldwide. Over the course of this book, the truth that Brown learns from his son is also rare — that the life that appears to destroy you is the one you long to embrace. Whatever is human is disabled. Walker is unable to stop bashing himself, and his father is unable to understand him. The boy is likened to the man in the moon, whose face we see though we know it is not there. The face is revealed by our believing in it. As Brown searches for his son’s mind, he finds his own.
He proceeds by leading us through a series of questions and quests regarding the science of Walker’s condition, and the boy’s future. Will he change, improve? Can he be taught? Should he be institutionalized? No one would have blamed the Browns if they had placed Walker in an institution from the start. Mother and father put the question to themselves, and their answer is the same: “No, no, not now. Later.” The reason for the delay is love. Walker brings a strange, sweet love to his family, not because he exhibits love himself, but rather because he elicits their capacity for it.
Along the way, the parents despair, quarrel, blame themselves for Walker’s lack of progress, fall into dark silences. There are money worries. Walker’s formula alone costs $12,000 a year. Husband and wife have no privacy. They pay less attention to each other than to Walker. They learn to live with him as a sideshow attraction in public. The perceived normalities of other families insult and assault them. In his investigations Brown discovers that had Walker been conceived today, a test administered at 10 weeks of pregnancy might have been available to detect abnormalities. Johanna says she would have had an abortion. Brown says, “But then you wouldn’t have had Walker.” Johanna counters that a fetus would not have been the Walker they know now. Brown speculates about what the world would be like without imperfect people like Walker. What we take from such exchanges is how lovely the couple are in their candor. One cannot help wondering if, in his formless, undemonstrative way, Walker created them.
Brown’s scientific pursuit is largely fruitless. He meets other parents with CFC children, but they offer only a passing communal solace. Too little is known of Walker’s condition. Brown rejects the idea of his son’s life “reduced to a typing error in a three-billion-long chain of letters.” Life is more complicated than a genome. He learns more from his travels in France, and in Canada, his home country, where he consults those who have given their lives to both aiding and learning from the disabled. People like the researcher Gilles Le Cardinal and Jean Vanier, who has created networks of support groups and communities for the afflicted, teach him much about Walker’s hidden mind. The 82-year-old Vanier, who founded L’Arche (after Noah’s ark), an international organization of communities for the intellectually disabled, believes that the severely disabled challenge us by their existence. They implicitly ask, “Do you consider me human?” They suggest how arduous it is to be human. They remind us of death.
Brown’s research appears to give both father and son a raison d’être. As a journalist — a feature writer for The Globe and Mail — Brown knows the satisfaction of learning a foreign subject and writing about it with newfound authority. The difference here is that most of the time journalists treat learning as a buffet at which they taste and move along. The story Brown is working on is the justification of his and Walker’s life. Yet he maintains the reporter’s tone of cool inquiry, even as he delves into matters of the spirit, which gives his learning process the feel of a reasoned capitulation. Brown does not seem born to spiritual thoughts. When he expresses them, they sound all the more persuasive, as one feels the pull of his natural resistance.
Walker is nearly 13 when Brown’s story ends, and he has changed a little. He is drawn to the sound of a human voice, even though he cannot produce one himself. It is said that babies learn language in order to tell the stories already in them. Walker cannot tell the stories inside him, but his inability may be his story, the one told in silence, of frustration and gratitude. If he knows anything, it is that he needs. He may even intuit that he is needed. When inevitably the Browns place Walker in a group assisted-living home, a white bungalow on the edge of town, it allows him what the family never imaged for him — a life of his own.
Standing back, Brown contemplates the mystery of his son, which contains other mysteries — for instance, do people like Walker improve evolution by testing our sympathetic capacities, thus moving us toward a survival of the weakest? “What if Walker’s life is a work of art in progress?” he asks. “Would that persuade you to take care of him for me?” The hurling of this gauntlet is what we have been thinking (dreading) all along. The Browns live in “an underworld of Walker’s making.” Of course they do. Yet who does not live in a world of someone else’s making? The trick lies in the attitude one brings to the inevitably compromised life. In a way, the containment that Walker forces upon his family offers an invitation to become creative within strict limits. Richard Wilbur said the strength of the genie comes from its living in a bottle. As relentlessly difficult and sorrowful as is the life that Walker shapes, it also insists on something beautiful in reaction to it. Thus Brown’s book.
But still. To be sure, Walker has made the Browns greater people. He has alerted them to the value of living in the here and now. He has helped to enlarge their ethical nature. He has made them aware that in most important things — war, love, death — we are as helpless as Walker. Nonetheless, for all that and then some, would we assume the care and feeding of Walker Brown? The father’s challenge is insincere. He would not trade his life for any of ours.
A wonder occurs on Page 50 of this book. The reader has been immersed in the endless pain of living with Walker. Suddenly there is a photograph of him and his father as they loll in a chaise. And Walker looks very much like an ordinary child. There is something slightly off about the eyes, but no more than that. After our imagining a heartbreaking monster, we see instead that Walker is close to us. He is the underdeveloped us, the unreachable us of whom we are always dimly aware. The image shepherds us through the rest of the book even after we are shown other, clearer photos of the boy’s malformations — Ian reading a newspaper, Walker leaning back in his arms, and the two of them at peace.