Sixtyfive Roses: A Sister's Memoir

by Heather Summerhayes Cariou

A loving, funny and profoundly moving literary memoir. The redemptive story of two sisters growing up in the shadow of a fatal illness, and a family fighting for a child's life.

Genres: Memoir, Biography, Nonfiction

436 pages, Hardcover

First published January 15, 2008

Reviews

[Steven R. McEvoy · Rating 4 out of 5]

When reading a biography, the hard part is often if you know the end of the story. This book is a powerful take of life, service, and a family that stood and faced a terrible disease and the medical community, and changed the odds, not only for their family member, but also for all families that deal with Cystic Fibrosis. This is a chronicle of a family's struggle against CF for 22 years. Our narrator, Heather Summerhayes, was 6 when her 4-year-old sister was diagnosed with CF, a disease that, at the time, her sister Pam pronounced as 'Sixtyfive Roses'.

At the time of Pam's diagnoses she was only given months to live. Yet the family believed differently and fought against it. Their mother promised that they would do all they could for sick little Pam and they did. The Summerhayes helped to create the Canadian Cystic Fibrosis Foundation with the assistance of the U.S. association and the Sick Kids hospital in Toronto. They set up a Financial Advisory Board as well as a Medical Advisory Board to help families deal with this disease and to raise funds for research for a cure for this illness.

This is a story of true Canadian strength - a story of hope, love and charity. This book, which spans years in a the Summerhayes' family life, will draw you into their struggle with prevailing opinions, medical advances, and always a struggle to love Pam, and seek what is best for her. Pam became one of a first wave of children diagnosed with this disease who lived into adulthood. Now the family and the medical staff were in new territory and 'all bets were off'.

Heather does an amazing job of recalling her family's life, living and dying with CF. She reflects in a sober way on the hard moments and celebrates the victories. The story is told in a well balanced way, not focusing just on the difficulties of living with a terminal disease. Heather tells the story of her cherished sister's life. A life lived to the full.

This book is a powerful story that will give you courage and faith to face the trials in your own life and the lives of the people who are dear to you. Celine Dion writes a moving forward.

The hard part of reading biographies is that you know where the story is going - yet with this one, the journey to get there is so moving and powerful, it will be great read.

(First Published in Imprint 2007-06-29 as in the book review column.)

[Olga · Rating 4 out of 5]

This is a fairly long book, but I did not feel that while reading.
It's quite detailed, consider it a warning if you're about to get into the story and that bothers you. But it is also very true and very relatable, if especially if you ever had siblings.
It does have a heavy religious motif, which I'm afraid won't speak to you as much if you are not. But the book surely does have some good messages regarding life, loss, and love.
Overall, definitely a good read.

[Persephone · Rating 4 out of 5]

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. In a spooky coincidence, Summerhayes-Cariou opens her book with the same lines from the song "Oh Very Young" by Cat Stevens that I used in a post about my elder daughter leaving home for university. I also 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.

[Talia Carner · Rating 5 out of 5]

A thousand roses to Heather Summerhayes Cariou for a superb perspective of a sibling of a seriously ill child. In unflinching, yet lyrical prose, Ms. Cariou details a childhood and early adulthood as the sister of Pam, who suffered from the genetic, chronic and fatal illness of Cystic Fibrosis. While their parents fought with no break for Pam's life in a daily routine involving hours of physical intense care, they had little time nor energy for Heather, two years older, and her two younger brothers, one of whom was also CF patient, albeit much less symptomatic.

As Pam's lungs failed to pump enough oxygen, Heather starved for attention from her overworked, wrenched parents. As one of Pam's lungs collapsed, Heather's future was imploding as she made a series of life and career decisions to stay close to home. Starting with giving up on a boarding school of ballet as a pre-adolescent, Heather continued to make sacrifices while Pam lived into adulthood and Heather compromised her acting career.

There are many books describing the grief of parents who've lost children and the bereavement of spouses over their departed soulmates. Few, though, have dealt with the grief of a sibling who grew up in the shadow of death, a shadow whose long cast followed Heather in the minutes, hours, days, weeks, months and years that it took her to grow up. Ms. Carious has now chronicled that life with sensitivity and superb artistic skill. She is unafraid and unapologetic as she details how the constant fear of her sister's dying created anger, confusion, guilt and frustration that mixed with her deep love. Impossible to contain all that in her young heart, the emotions exploded in years of bad temper and daily outbursts that further drained her parents who had no more emotions to spare.

"Sixty-Five Roses" was the words a child learned to pronounce "Cystic Fibrosis." May the disease remain out of the realm of readers, but any lover of literature will enjoy embarking on this journey of love.

[Renee Crook · Rating 3 out of 5]

A very touching story. Even though I knew the outcome (because this is a memoir) I was very sad about this book. I was reading it right before Christmas time and was determined to finish before Christmas day because I did not want to be reading something so sad and distressing on Christmas. A good read... I don't think I will read it again unless I am feeling like I want to review the information on Cystic Fibrosis.

[Katlyn Gillespie · Rating 4 out of 5]

I liked to see the differences in the medicine and treatment from back then as compared to now. i was shocked how the doctor smoked a cigarette during her hospital check up. Comparing the treatment she recieved to the treatment i recieve was interesting. It was a sad and very personal story for me. i would recommend it to others, especially those who know someone with it or have the disease themself.

[Josie · Rating 5 out of 5]

A must read! Wonderful book about CF - a good book even if CF does not affect you/your family/friends, it really applies to any terminal illness. The Summerhayes family really went through a lot, but Heather put it into words that make the experiences a "life lesson" and something positive to ponder. I have a better understanding for my own family now and of myself.

[Jan · Rating 5 out of 5]

This was a very hard book to read from the stand point of having a child with cystic fibrosis (65 roses) but it was so well written and beautiful from the courage that Pammy had. Not your usual "illness" book, but a honest look at what happens to emotions in a CF family, and how much love there is.

[Susan Albert · Rating 5 out of 5]

An authentic, honest, fierce story about growing up with a sister who has cystic fibrosis, and parents who are utterly engulfed by the experience. This is a book about a family in crisis and the ways mother, father, sisters, and brothers coped. Compassionate, profound, deeply moving.

[Janet · Rating 5 out of 5]

This book was probably the most brutally honest biography I've ever read. Even if your family does not have illness as part of it's makeup, this author will sweep you up in her story.

[Cheryl S. · Rating 4 out of 5]

This one will rip your heart out and lift it at the same time.