Read for book club. A dad wrote a biography about his son with a rare disease. Very technical. Interesting learning about the disease and how a parent deals with it. Sad. Too long. ( )

An honest, moving, well-written memoir about raising a child with a rare and tragic syndrome (I hate using words like tragic, but when a symptom of a disorder is unstoppable self-harm it is difficult to avoid.) Having and loving a disabled child comes with many gifts, and many many sacrifices. Brown does a wonderful job of conveying all of that. For me it was perhaps too detailed with regard to accessing services and needed items such as bearing the outrageous costs of simple things like a lifetime of diapers and formula (Brown's son could not swallow or talk or be toilet trained) to hold my interest. All that said, when I finished I immediately gave it to a friend with an adult child severe autism and intellectual disabilities who had had many of the same struggles getting services and laying out a plan for her daughter for after she and her daughter's father are gone. I know it will be a meaningful read for her. ( )

The Boy in the Moon is Ian Brown's powerful, honest, and emotionally complicated memoir of raising his son, Walker―one of only a few hundred people worldwide who live with an extremely rare genetic mutation.Born with CFC (cardiofaciocutaneous) syndrome, Walker Brown is a mystery, as remote to his family as the moon. Unable to speak or swallow, compelled to hit himself, requiring surgeries, and round-the-clock care, he becomes the focus of his father's keen intelligence.As Brown becomes part of a community of families, he lets go of his self-blame and his desire to "fix" Walker, learning to accept the boy he loves, just as he is. ( )

Bracing and honest. Finds resonance with parenthood on all levels. Made me want to be a better father, not because Brown is some kind of saint but because he has keen insight into what parenthood is in practice.

But I would have been happy with a shorter book that omitted Brown's journalistic voyage into the medical history and social present of the mentally disabled. When he's talking about Walker he's superb. ( )

Ian Brown (not to be confused with the Stone Roses front man) is a Canadian journalist and radio personality. He and his wife Johanna (also a writer) have two children, Hayley and Walker. Walker has CFC, a genetic syndrome that renders him developmentally disabled, unable to talk, and subject to a raft of health problems.

Brown's book is a memoir of the difficulty of raising his son, a rumination on the history of the care (or lack of same) of the mentally retarded (and yes, Brown uses that word) in history, a quest for answers, and a philosophical examination of the value of the less abled to the rest of us, and vice versa.

It's a book you'll certainly dialogue with. It'll challenge your idea of your own level of empathy and get you thinking about the role of society in raising special needs children. It's especially relevant in these times: first because genetic testing and termination of pregnancies may eventually eliminate these special cases from our ranks; second because the current social Darwnism being shoved down our throats by small government advocates would offer no respite or help for parents who would most need it. ( )