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Nov 19, 2010GailRoger rated this title 4 out of 5 stars
For pretty well as long as I can remember, one of the hallmarks of the beginning of the academic year is the rather hyper presence of brand new university students accosting passers-by for Shinearama as part of their freshman week. In the early days, they actually shined your shoes to raise money for the Canadian Cystic Fibrosis Foundation. I had a favourite pair's colour permanently changed due to an over-enthusiastic Shinearama participant wielding so-called neutral polish. Now, they just bounce up and down a lot and chant. I throw loonies in the collection box and get high-fives from students for the rest of the day when they spot my sticker. The Resident Fan Boy resists, but I toss in another toonie and firmly press the sticker to his chest: "You're doing it for my cousins," I tell him. Pamela Summerhayes and Jeffrey Summerhayes are my fifth cousins. Their connection to me stretches out past their father, through his mother to Simon Cleaver and Elizabeth Clarke of Bow Brickhill, Buckinghamshire, who married in 1788 and are our great-great-great-great-grandparents. When Pamela was diagnosed with Cystic Fibrosis at age four in 1958, her parents were told she had a very short time to live, most likely months. Over the next few years, as they scrambled for resources and support, they founded the Canadian Cystic Fibrosis Foundation. A few years later, their youngest child Jeffrey was also diagnosed with CF. Pamela died in 1980 at the age of 26. Jeffrey, now in his late forties, is still living with the challenges of CF. One of Pam's very last acts was to make her sister (and also my fifth cousin) Heather promise to write their story. First off, this is no sentimental, gauzy, softly-lit memoir of a beloved relative (and believe me, I've read a few). This is an unflinching look at what a chronic condition can do to a family. Heather Summerhayes Cariou is unsparing of herself, of her family, of her extended family, friends, acquaintances, professionals. Don't get me wrong; this is not a hatchet job. The story is told with great compassion, but Summerhayes-Cariou is not sugar-coating any of the details. She names names, up to and including the teacher who humiliated her brother Gregg in Grade Four. (Have there been any libel suits?) She replays family screaming matches, and catalogs the events leading to the eventual break-up of her first marriage. This is no walk in the park. However, this is the work of a strong writer and there are, for me at least, many moments of familiarity. I recognized something of our own situation (my younger daughter is on the autism spectrum) in the descriptions of the morning after the heart-breaking diagnosis, the striving for normality in everyday life, and the disappointment when family and friends don't know what to say or do and either fail to reach out or reach out hamfistedly, resulting in more emotional turmoil and damage. I found myself wincing as I read about my distant cousins' struggle to balance the needs of typically-developing children with the urgent and compelling demands of offspring with special challenges. My elder daughter has never acted out the way Summerhayes-Cariou did as she fought both with her family and with the conflicting emotions that arose from having a sister at risk, but I lost quite a bit of sleep wondering about the many ways I must have failed to be the parent I wanted to be to both my very different daughters. So, it's not a feel-good book. It's not an escape fantasy. It's not even a tear-jerker. It is, however, well-written with stinging honesty.