Siblings Of Sick Kids Learn A Life Lesson Early

fromWPLN

Children who have siblings with chronic illnesses or disabilities often find their lives are constantly interrupted by medical emergencies that trump regular kid cares like birthday parties and soccer games. These children learn at an early age to put another person's needs first and are often better adjusted in the long run.

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LIANE HANSEN, host:

This past week, NPR's MORNING EDITION broadcast a series of reports and interviews about how brothers and sisters influence our lives. That's especially true of siblings with chronic illnesses or disabilities. The healthy sibling often feels caught outside the bubble of the familys world; life is constantly interrupted by medical emergencies that trump regular kid concerns, like birthday parties and soccer games.

But as Kim Green, from member station WPLN in Nashville, reports, these children often develop a sense of empathy well beyond their years.

(Soundbite of video games)

KIM GREEN: On a recent morning, Rafe Scarpati and his two friends claw out of their sleeping bags in his basement bedroom. The groggy young men take turns engaging in a video game battle.

Unidentified Boy #1: So, you agree that you did.

Unidentified Boy #2: Great.

GREEN: Its a pretty average teenage-boy scene, except that the 19-year-olds life so far hasnt been average. Rafes younger sister, Cyan, was born with a heart defect, and his parents leveled with him early on.

Mr. RAFE SCARPATI: They told me, you know, Cyan is living off of borrowed time, you know. She was supposed to die a week after she was born. And you know, and they kept - well, maybe shell live a while. And she ended up, you know, living a hell of a lot longer than that, you know, 16 years, so...

GREEN: A year ago, Cyan died after a failed heart transplant. Suddenly, the family's center shifted. As Rebecca Scarpati grieved for her daughter, she started thinking about the ordinary, healthy-kid childhood her son never had.

Ms. REBECCA SCARPATI: Our life was just focused in so many ways around her health, and around her surgeries and her needs and ultimately, the transplant. And when she passed away in the summer, it was almost like I awoke one day and thought, my gosh, I have a son who is 18 years old, and Ive almost missed his life.

GREEN: Almost missed his life. Its easy for kids like Rafe to get lost in the hectic shuffle and profound worry surrounding a siblings disability or illness. But there's a place that's trying to help them cope.

Ms. MEGHAN BURKE (Facilitator, Vanderbilt University Kennedy Center): If we can go around and talk about it, is that okay?

GREEN: At Vanderbilt Universitys Kennedy Center, organizers have started a support group for teen siblings. On a recent rainy Saturday, facilitator Meghan Burke talks to four boys.

Ms. BURKE: Do you guys have to watch your brothers at home a lot?

Unidentified Boy #2: Oh, a lot.

Unidentified Boy #3: Yeah.

Unidentified Boy #2: Yeah, a lot.

GREEN: Burke says its not easy to get kids, like William Putthoff, to open up about difficult issues like this. Putthoff knows his parents stay pretty busy taking care of his 4-year-old brother with Downs syndrome. And he doesnt want to add to their worries, so he entertains himself a lot and solves problems on his own, like how to get his grades up. But he says he doesnt see his brother as a burden.

Mr. WILLIAM PUTTHOFF: Like, it kind of gets me stressed out when hes like getting really crazy and wild. But it also does, like, teach me to be patient with him, patient towards other people.

GREEN: The siblings in the Vanderbilt support group say a lot of unselfish things like that, and didn't show any resentment about their extra responsibilities at home or about getting less attention. Older siblings often talk about how they made big life decisions with other people in mind. Like this, from Rafe Scarpati.

Mr. SCARPATI: I think that's one of the reasons I decided to take the semester off from college - is because both my parents could use me here, and the fact that I don't really want to be away from home - or I didn't.

GREEN: His mom, Rebecca, says it's an odd gift to realize at a young age that youre not the center of the universe. She recalls something Rafe said to her when he was younger. Shed bought a present for his sister, Cyan, but not for him and felt bad about it.

Ms. SCARPATI: He said, no, Mom, thats okay, I understand. We need to give her the very best life that she can have while shes here.

GREEN: Growing up in a sick or disabled sibling's shadow may leave kids feeling neglected at times. But experts say learning at an early age to put another persons needs first often leaves these siblings better adjusted in the long run.

For NPR News, Im Kim Green in Nashville.

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