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.