Ian Brown is one of the many, many CBC journalists that I’ve had a little radio crush on over the years, although these days he works more in print media and I don’t get to hear his lovely mellow voice like I used to on Talking Books. But even in print, that voice is there, vivid and warm and personal, in The Boy in the Moon, Brown’s memoir about raising a profoundly disabled child.
I don’t think I’ve ever read a book about disability that gives a more raw, honest portrait of the mixed emotions, the love, the frustration, and most of all the sheer mind-numbing exhaustion, that parents experience when caring for a child as severely compromised as Brown’s son Walker. It’s all there — the physical restraint, the sleepless night, the strains on the parents’ marriage and on their other, non-disabled child, the gut-wrenching decision to eventually put Walker into care outside the home. The Boy in the Moon is painful to read sometimes, but I found it impossible to put down.
Along with telling the story of his own family’s experience, Brown adds some of his journalistic background to the memoir mix. He interviews other families whose children have been diagnosed with the same syndrome as Walker has; he talks to geneticists and learns about genetic disorders; he visits L’Arche communities in France and in Canada and interviews Jean Vanier in his quest to learn about models for how intellectually disabled people can live successful in the community without the strain destroying their families. All of this is interesting, but I found myself most drawn in by the passages where Brown simply describes his own family’s experience and his own conflicted feelings about the child he loves, but who will always be a stranger to him. I highly recommend this book, but not having had the experience of having a disabled child myself, I read about the experience as an outsider reading about an unfamiliar world. I’d be most interested to know what parents with disabled children think about this book, which seems to me so honest it’s sometimes painful to read.