The Bottom Line
By Heather Summerhayes Cariou; 436 pages. Subtitle: A Sister's Memoir.
Virtually from the time that Pam Summerhayes was diagnosed with cystic fibrosis at age four, her family braced for her death. That she lived to age 26 was an amazing achievement, one that testified to the love and effort of all family members. But as her sister chronicles in this tough memoir, the unending focus on the health and well-being of one child left deep scars on the life of her three siblings. It may be good for parents to read about and consider these consequences, but it's going to hurt a little.
Pros
- Memoir explores the effect of medical issues on siblings from childhood through adulthood
- Writing is engaging and involving
- Generally sympathetic to all family members, though accurate too about resentments at various times
- Gives information on cystic fibrosis and its many complications
- Chronicles the founding of the Canadian Cystic Fibrosis Foundation
Cons
- At 400-plus pages, it's awfully long
- Incident after incident of health challenges and hospitalizations start to run together
- Mistakes made and damage done by a dedicated Mom and Dad makes this hard reading for parents
Description
- Foreword by Celine Dion
Labor Day Weekend 1980 Pages
Part One: Headwaters - Chapter One: Pages 9-25
Chapter Two: Pages 27-33
Chapter Three: Pages 35-48 - Chapter Four: Pages 49-58
Chapter Five: Pages 59-68
Chapter Six: Pages 69-93 - Chapter Seven: Pages 95-119
Chapter Eight: Pages 121-143
Chapter Nine: Pages 145-189 - Chapter Ten: Pages 191-218
Chapter Eleven: Pages 219-232 - Part Two: The River Meets the Sea
Chapter Twelve: Pages 235-248
Chapter Thirteen: Pages 249-261 - Chapter Fourteen: Pages 263-280
Chapter Fifteen: Pages 281-293
Chapter Sixteen: Pages 295-308 - Chapter Seventeen: Pages 309-235
Chapter Eighteen: Pages 327-334
Chapter Nineteen: Pages 335-353 - Chapter Twenty: Pages 355-383
Chapter Twenty-One: Pages 385-400
Chapter Twenty-Two: Pages 401-417 - Spiritum Ex Machina (The Ghost in the Machine)
Epilogue
Guide Review - Book Review: Sixtyfive Roses
Parents who dedicate themselves wholeheartedly to prolonging the life of a chronically ill child must sometimes wonder if they're neglecting their other children, or their marriage, or their own personal health and sanity. It's a moot question, mostly, because there can be no choice but to persevere in life-preserving, life-engulfing care. Easier, really, not to think about it much.
Parents who go a step further than devoting their life to a child's care to caring for others' children, too, through advocacy risk taking another large step away from other important family needs. Yet, again, it's hard to understand how it's possible not to fight for research dollars and cures and treatments and acceptance. Again, it's easier to forge ahead without much effort at introspection.
From that point of view -- that "how can we do otherwise?" view -- the Summerhayes family looks spectacularly successful. Pam was barely expected to live to age 10, yet through her parents' ardent care and advocacy, she lived to 26. Her younger brother, also diagnosed with cystic fibrosis, is 40 years old at the book's end, living independently. Their parents started the Canadian Cystic Fibrosis Foundation from their living room. This is the sort of family you look at, when you're struggling, and think, "I should be doing things like that."
But there's a cost, a terrible cost, and author Heather Summerhayes chronicles it in a way that will make your heart hurt, and maybe your conscience, too. It's a particularly tough read for a parent, I think, because it takes a sibling's-eye-view of slights and misjudgments that, God help us, we all make. If you've been trying not to think about it, you'll be forced to, and that's probably a good thing. But, as the author admits, there's still little option but to do what needs to be done.
