The Boy In The Moon by Ian Brown ✔✔✔✔✔

If I were to record everything I either learned or deeply appreciated from this book, I'd be here all day trying to put my thoughts in order. First, let me say that the writing is wonderful - clear and concise but at the same time deeply moving without ever getting sentimental. Ian Brown is a Globe and Mail writer, and I've heard him talking about books on CBC as well. I first read about this story in the Globe when Ian wrote a Focus article on his son Walker, the boy in the moon.

Walker was born with a rare genetic mutation called "cardiofaciocutaneous syndrome" - he is globally delayed, cannot speak, will always be in diapers, and is constantly hurting himself. His father describes him: "Walker, my teacher, my sweet, sweet, lost and broken boy".

In someone else's hands, this could turn into a litany of how challenging and yet how significant this child is, and how the lives of his family are in constant turmoil, But Brown goes way beyond that, and this is what makes the book so exciting. He sets out on a journey to find other CFC children and their families to discover similarities between them and Walker, he turns to science - genetics - to find the answer to why Walker is so profoundly disabled, he journeys to France to visit Jean Vanier's L'Arche to live with disabled people to discover how Walker might be able to live and prosper after his parents die.

The L'Arche community is very interesting because, unlike many many other agencies, the disabled people themselves make up the community and the dynamic - there is no integration such as in our own schools here - they define their own world, rather than constantly trying to adapt themselves to a world they don't understand. I found this enlightening, because who says our "normal" is something to be admired or longed for when your "normal" is something else entirely?

When I mentioned this book to the two other people I know who read it, one said "What a sad life", but I couldn't see it that way. Yes, it was sad, but it was also life-changing and strengthening and I come out of it thinking what wonderful creatures we all are, with our various flaws and deficiencies, and how we continually enrich one another's lives, often with even being aware of it.