Friday, July 8, 2011

The Boy in the Moon... and an amazing dream

These days I'm reading a wonderful book called The Boy in the Moon: A Father's Search for His Disabled Son by Ian Brown (2009, Random House of Canada, ISBN 978-0-307-35710-6). Ian, a feature writer for the Toronto Globe and Mail, tells the story of his son, Walker, who was born with a disability known as cardiofaciocutaneous syndrome (CFC). Ian is a gifted writer whose truthful, matter-of-fact prose borders on poetic even as he discusses how difficult it is to have a child who exists outside of what's considered normal, how hard it was to provide constant care, and how much anguish went with the decision to find a group home for Walker.

I haven't wanted to put the book down. Ian's writing is compelling, not just because I have an uncle and cousin who have disabilities, or because I've worked with people with disabilities at various intervals in my life and  now work with L'Arche, a community where people with and without disabilities live together in relationship. Ian shows the pain and beauty of his relationship with his son, and the joys and struggles that go with it. Reading about Walker has made me realize that I may have known a person with CFC in the first group home I worked in back in the early 80s. And Ian's comment about his wife and daughter dreaming of Walker talking like a trial lawyer sparked a most amazing dream for me, too...

I was at a large L'Arche banquet, with Lucy on one side of me, and Daria on the other. Lucy normally communicates with a series of moans, and Daria with a few repeated syllables, but at this banquet, the two of them were chatting and laughing non-stop about everything. My jaw dropped at their conversation, and everyone around me was laughing at my reaction, because they all knew Lucy and Daria could talk and I wasn't in on the secret. It was a wonderful, happy dream, because for once I didn't have to guess at what my two friends wanted to tell me! I woke up laughing.

What I really love about The Boy in the Moon is that it is written with the awareness that, even though we would like to live in a world where no one has to struggle with disability, people who are disabled have many gifts to offer. Ian Brown writes eloquently about the bitter-sweet joy Walker has brought into his life. I understand that, though only from a niece, cousin, and friend's point of view, not as a parent. I sometimes wonder what the disabled people in my life would be like without their disabilities, and wish that disabilities didn't happen. But Uncle Louis is a dear man, and Sarah is my favourite disabled cousin just as I'm her favourite "oldest cousin in Edmonton." Every time I go to work, Thomas fills me in on the whereabouts of all my colleagues and their cars. Darren's preoccupation with arranging the lunchroom chairs in perfect rows around the table makes me smile. Harry tells me garbled but assuredly humourous stories that make him laugh, which makes me laugh. Jane informs me when there are babies anywhere in the vicinity because she loves babies. Sandy wants to help with whatever I'm doing, but especially with shredding. All of them would be very different without disabilities, but all offer amazing gifts to those of us who know and love them.

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