Ian Brown, The Boy in the Moon; A Father's Journey to Understand His Extraordinary Son (New York: St. Martin's Press, 2009), 293pp.
When Walker was born in 1996, his parents Ian and Johanna Brown knew something was wrong. Seven months later Walker was diagnosed with CFC — cardiofaciocutaneous syndrome, an extraordinarily rare genetic mutation that didn't even have a name until 1986, or a genetic test until 2006. Estimates vary, but as few as 300 people in the world are born with CFC. The nature and severity of syndromes vary, but as the months unfolded it became clear that Walker was profoundly disabled.
He cried non-stop for hours. He has the signature facial dysmorphia of CFC. He never slept through the night and couldn't talk. Eating difficulties necessitated a feeding tube. Heart and skin irregularities compromised his health. Worst of all, Walker would hit, bite, and scratch himself. Before long his medical record was six inches thick. The first geneticist that Ian Brown met told him that there were only eight other cases in the world. "Eight: it wasn't possible. Surely we had been blasted out to an unknown galaxy."
Brown later learned that CFC was caused by a random mutation in three genes. As a "fairly conventional atheist" (41), he understood the implications: "The scientific definition of evolutionary success, of a successful random mutation, is one that allows the organism to survive and reproduce. Nature alone would not have allowed my son to live. By the judgment of a geneticist, Walker was a deleterious effect of nature." Brown didn't resent the geneticists. "What I resented was the idea of my son's life reduced to a typing error in a three-billion-long chain of letters, to one dinky nucleotide" (167, 272).
So what is the meaning of Walker's life — to himself, his family, and society? Brown's memoir tells how he's tried to answer that question. He describes the upheaval in his family and marriage, the sleep deprivation, the physical and emotional exhaustion, financial worries, etc. He battles the bureaucratism of public schools, hospitals, and government agencies, most of which are staffed by competent and well-meaning people but which are nevertheless required to standardize "one size fits all" protocols guaranteed to stymie the many. The internet made connections with other CFC families possible, and Brown visits them to trade stories. When Walker turned eleven they faced the agony and necessity of placing him in a group home (where he flourished): "Life with him and life without him: both were unthinkable" (68). Aggravating it all were the chronic feelings of guilt, shame, and failure that haunt parents of the profoundly disabled.
The Boy in the Moon has won numerous prestigious awards in Canada (where Brown lives). The New York Times named it one of the top five non-fiction books for 2011. I can't remember reading a book that is so carefully crafted, so brutally honest, so tenderly written, and so life-affirming. Walker had horribly bad luck in the DNA lottery. But as you learn from his father, he's also the antidote to our many forms of false-consciousness, for Walker never tries to be anyone but himself. He invites us to love him just as he is, which is about the best thing any human being could ever hope to give or receive.