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Scarvey column: in praise of super sibs

Perhaps all parents have a tough time making sure their children get equal attention, but when one child in a family has cancer, the challenge is even greater.
When my daughter Quinn was diagnosed with a brain tumor at 9, her older sister, Spencer, was 11. Overnight, Spencer had to step into a role no one would ever choose.Her calm presence provided something of normalcy amidst the chaos. When Quinn struggled with memory, Spencer would answer the same questions over and over, never letting on she’d heard them before. When Quinn was hallucinating in the hospital because of drugs and sleep deprivation, Spencer knew how to gently reel her back to reality. And thank goodness she wasn’t squeamish about seeing cerebrospinal fluid dripping into a bag.
My husband I did our best to give her our healthy kid the attention she deserved, though she never demanded it. In middle school, I took her out of school the day “The Lord of the Rings” opened. I don’t condone school-skipping as a rule, but at the time, whisking her off for an afternoon of fantasy seemed the perfect way for me to let Spencer know she was important. My husband found his ways as well, but I’m sure there were times when we fell far short of the mark.
I perhaps didn’t realize how much was swirling around her in head until I read an essay that she wrote for her application for a scholarship from SuperSibs, a wonderful group whose sole aim is to support the siblings of young people with cancer. Like us, Spencer was feeling fear, sadness, maybe a little anger. But it’s also quite common for siblings to have another negative emotion to deal with ó and her essay made it clear that she wasn’t immune to it: One lesson that I have had to repeatedly learn over the past six years is that, as it was put by B.C. Forbes, “Jealousy is a mental cancer.” Even though Quinn has had to endure six brain surgeries, memory loss, impaired vision, learning disabilities, and countless other side effects, I have been jealous of her just as many times as she has been to the doctor.
Relatives we’d never met came out of the woodwork sending checks and gifts and cards, 9 times out of 10 addressed to her. People at church, school, people I babysat for, people I hardly even knew all seemed to have a newfound reason to talk to me ó about my sister. When Quinn was home from school on chemotherapy and wanted something, all she had to do was ask, and she received.
I knew deep down that she was suffering from things I would never know the magnitude of, yet jealousy swelled inside of me. While I was in no way ignored by my friends and family during this time (all were very supportive), I wanted the attention Quinn got ó minus the whole “head about to explode” thing.
Yet at some point when I was feeling sorry for myself, it dawned on me that no matter what people gave Quinn, no matter what material items she now possessed, no matter how focused the spotlight now was on her, she would have traded it all to have the one thing I still took for granted: my health.
Parents of children with serious illnesses need to tune in to what their healthy children might be feeling or needing but not articulating. Different ages present different challenges. Younger children often act out ó I’ve heard the stories from other brain tumor families. Older children, however, might not exhibit any obvious signs of turmoil. Spencer, for example, was never anything but loving toward her sister. When we had to pull over on the ride to the Renaissance Festival for Quinn to throw up (thanks, chemo) Spencer was quick to suggest that she didn’t care that much about the festival anyway ó when I knew she cared very much.
When Spencer began to express interest in attending the School of Science and Math in Durham, my initial thought was “No! What will Quinn do without her? What will we do without her?”
But then it hit me: Spencer had been a good and faithful sister and daughter. She had sacrificed a lot because of her sister’s cancer ó although of course Quinn has by far given up the most.
This time, the focus would be on her. NCSSM would be a place where she could be someone other than “Quinn’s sister,” where she could carve out her own place.
It’s not that she doesn’t think about cancer anymore ó in college she applied and was accepted for a work study job in a lab with a cancer researcher whose primary interest is in brain tumors. I think she may even have developed a fondness for lab rats.
Parents of kids with cancer should know that the SuperSibs organization is there to help their other children deal with a sibling’s cancer. SuperSibs sends small gifts and cards to siblings to remind them they’re special and help siblings deal with the emotional upheaval that they will certainly experience having a seriously ill sister or brother.
For more information, go to www.supersibs.org.
Contact Katie Scarvey at 704-797-427 or kscarvey@ salisburypost.com.

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