This month???s T-dot Blogger Bookclub pick is Ian Brown???s The Boy in the Moon. I first devoured it ages ago, in manuscript form. I rarely reread anything these days, but I made an exception this time: it is a heartrending, well-written book and I had no problem reading it again so it would be fresh for next week???s meeting.
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Ian Brown???s son Walker was born with a very rare genetic mutation called CFC. He was twelve-years-old when the book was published, and weighed only 54 pounds. He can???t talk and he wears diapers. He wears protective gear to prevent himself from repeatedly punching himself in the head. In the opening pages, Brown explains what life is like caring for Walker in unflinching detail, but without self-pity. He describes the nightly routine for the first years of Walker???s life and it truly is hard to fathom. He is frank about the physical and mental exhaustion he and his wife Joanna endure, as well as the toll it takes on their family and marriage (they also have a daughter). Reading an account like this really puts things in perspective. It???s hard to whine about my kids waking up a few times during the night after reading about Walker???s nightly routine.
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But the most interesting parts of the book, for me, are Brown???s ruminations. What is Walker???s interior life like? Does he have a sense of self? What is the value of his life? What is the value of any life? ??What are we to learn from Walker? (He believes there is something profound to be learned from someone like Walker). As more and more genes are isolated and prenatal tests become even more sophisticated, there are even fewer people like Walker. What will that mean for us as a society?
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I hope this month???s host has lots of vino, because I think we???ll be talking for a long time???
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Read an excerpt from the book here.
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I followed this story avidly when it was a feature series in the Globe and Mail, and cried when it was over, so thankful and touched for the journey Ian Brown took us on with Walker and his family and the others he met researching Walker’s condition. In what ways does the book expand on the story?