“Heather Summerhayes was six when her four-year-old sister Pam was diagnosed with Cystic Fibrosis and given only months to live. ‘Sixty-five roses’ was the way Pam pronounced the name of the disease that forever altered the lives of her siblings and parents.”
Sixty-Five Roses: A Sister’s Memoir
For Canadian readers – Sixty-Five Roses: A Sister’s Memoir
When Pam’s mother told the girls that Pam might die, Heather–the older sister, protector and defender–told Pam that she would die with her. From that moment forward, every thing that Heather–or anyone in the family–did was always predicated on Pam, her care, and her uncertain future.

When Pam was diagnosed with Cystic Fibrosis in the late 1950s, little was known about the disease or how to extend the life of CF patients. Cystic Fibrosis is the most common fatal genetic disease of children and young adults. It’s not a pretty disease. Eventually, the lungs of the victim fill with fluid & blood and she drowns in her own breath.

Although a Cystic Fibrosis Foundation existed in the U.S. at the time of Pam’s diagnosis, there was no support system available in Canada where the Summerhayes lived. So they established the Canadian Cystic Fibrosis Foundation. Although this was a selfless, admirable accomplishment, it meant time away from the family visiting chapters of the Foundation across Canada, and additional stress in the form of financial strain since they personally bore the total cost of all such travel and Foundation work.

I strongly identified with Heather’s story since I was also born in the early 1950s, raised in small town southern Ontario and was the eldest of five children. But I didn’t have the imminent death of my younger sister hovering over me as I went through the difficult growing-up years, as Heather did. I ached with her description of her teenage angst and anger, complicated in her case by the constant guilt of being healthy and being able to go on living. Or could she?

At times, it seems that Heather’s life was always on hold, waiting for Pam’s death. And always conscience-stricken that she had options: of going to university or getting married, and looking forward to a future that lasted longer than….how long? Due to the efforts of her parents in actively pursuing new treatments and to her own will to live, Pam did not die until she was twenty-six years old.

The impact of a person with special health concerns on the siblings is too important to ignore. Healthy siblings simply do not develop in a vacuum separate and apart from the needs and concerns of the child/adult with special needs. And although it is the parents who will initially administer care and make decisions about treatments, ultimately it is the siblings who will be in the patients’ lives longer than anyone.

It seems that part of Heather’s anger during her teen years was a result of guilt, and partly a result of a sense of having no control. In consultations, in support groups, with medical staff and service providers, it is always the parents who are involved and the siblings are left, literally and figuratively, in the waiting room.

The Siblings Support Project in the United States has created a discussion and support group “regarding the considerations that (healthy) siblings want from parents, other family members, and service providers.”

Ultimately, this is the story of two sisters. In the last conversation that Pam had with Heather, she instructed Heather to tell that story. It’s taken Heather decades to do that – but it is laid bare in this memoir.

Here is Pam’s legacy–the five pillars for life that she left:
1. We can’t control life by being afraid of it
2. The only true power we have is the power to choose
3. Joy is possible every day – no matter what
4. There’s a difference between giving up & surrender
5. Never give up!

Heather writes with stunning honesty about her feelings, Pam’s bravery, and the strains on the fabric of family life. I highly recommend Sixtyfive Roses as a book that will make you laugh, make you cry, and touch you so that you never look at the life the same way again.
Sixty-Five Roses: A Sister’s Memoir
For Canadian readers – Sixty-Five Roses: A Sister’s Memoir
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[tags]Sixtyfive Roses, Sixty-five Roses, 65 roses, 65rosesauthor, Heather Summerhayes Cariou, Canadian Cystic Fibrosis Foundation, CF, five pillars, Pam Summerhayes, Siblings Support Project, memoir, sisters[tags]