Kids gain wisdom and resilience from siblings with chronic illness or disability
Two summers ago, I met Rebecca Scarpati while I was working on a public radio story about an innovative creative writing and performance camp for girls, called “Act Like A Grrrl.“
Rebecca’s daughter Cyan had been with “ALAG” since its beginnings around 5 years ago. Rebecca explained that the camp had been an important part of Cyan’s life. Born with a life-threatening heart defect, Cyan couldn’t be as physically active as other kids, and she was constantly in and out of the hospital for special care. So it was a revelation for the sixteen-year-old to find a place where she could feel completely accepted by her peers, and where she could write and talk honestly about her frustrations and fears surrounding her life and health. (Visit this site to listen to the story of ALAG and to hear additional audio of Cyan reading an essay she wrote about her many hospital visits.)
In the interview, Rebecca Scarpati told me that the month at ALAG helped prepare her daughter to face an upcoming heart transplant.
“About a week after the program was over, she said to me, you know, Mama, am I gonna have to have a heart transplant?” Rebecca said. “I said, well, the doctors really believe that that’s gonna be the next step for you to leading a healthy life. And I said, ‘What do you think?’ And she said, ‘Yes. Now I’m ready.’”
In spring of 2009, Cyan died after complications from that heart transplant. The ALAG community and its extended members mourned and continue to mourn that wonderful young girl.
This spring, I found myself interviewing Rebecca Scarpati again. This time, she spoke about her 18-year-old son Rafe, who’d lost his little sister right after he graduated from high school. For most of his life, she pointed out, he’d quietly existed in the background of his family’s world, left out of all the hectic activity and care and constant worry surrounding Cyan.
“He only knew that there was this little universe happening that was his family that he wasn’t quite a part of…there is an empathy that develops from sort of being…almost on the outside looking in.” -Rebecca Scarpati
Not that he complained. In our interview, Rafe talked matter-of-factly about how he learned to be independent at a pretty young age, often cooking his own food and entertaining himself. He even seemed to have prepared himself for his sister’s death, to an extent. After all, he’s spent his entire life considering that awful eventuality.
Talking to Rafe and other siblings (both kids and adults) about what it’s like to grow up with a sick or disabled brother or sister at the center of a family’s orbit opened my eyes: I was expecting a piece about kids shunted aside, left to fend for themselves, perhaps resentful of the attention a special-needs sibling was getting. And that may sometimes happen.
But what I found was a different story entirely, a story about empathy and resilience and a special kind of wisdom, born of a life lived with someone else’s needs coming first from an early age: 13-year old boy talking about how his little brother with Down Syndrome teaches him to take things in stride; a young grad student making big life choices with her younger brother in mind, knowing she may one day choose to become his main caregiver. I mean…wow. Makes me feel pretty darned selfish.
Sometimes, it’s good to be surprised.
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