When Walker Brown – the son of journalists Ian Brown and Johanna Schneller – was seven months old, doctors diagnosed him with CFC syndrome, a rare genetic mutation currently identified in only 300 people worldwide. Now 13, Walker weighs less than 60 pounds, can’t speak, and mentally and developmentally falls between one and three years old. He is also a boy who lives in the moment – the state of pure being that Buddhists strive for, as one doctor points out. A great laughter who loves beautiful women, he also possesses “an often charming cocktail-party personality,” writes Ian Brown.
The Boy in the Moon, which began as a series of Globe and Mail columns by Brown (BA1976 Trinity), is both a quest and meditation. Brown searches for meaning in his son’s life – its value to Walker himself – and longs for proof that his boy has an inner life. He also explores how society views and treats the disabled, and their larger role within the community. (“The purpose of intellectually disabled people like Walker might be to free us from the stark emptiness of survival of the fittest,” writes Brown.) The author finds radically different viewpoints while visiting CFC children and their parents, investigating community living for the disabled at the esteemed l’Arche in France and Montreal, and exploring the cold world of genetics testing.
By revealing his feelings of anger and hard-won moments of joy, the harrowing toll on his marriage, sanity and finances as well as his depth of love for Walker, Brown offers one of the most profoundly honest portrayals of life as a parent of a disabled child – and perhaps of parenthood, period. “He made me stretch for him; for inexplicable reasons I am grateful to him for that, always will be,” writes Brown. “Where would I have gone without him?”