Big sis lifts up ailing brother

She has a prayer she says for her brother when, time after time, he's about to enter the hospital — "I hope that Trevor is all right ... and I hope that he will get to do the stuff that I do and be a regular kid. Amen."

It's the prayer she's said on countless sleepovers at homes of relatives while her parents, who divorced in 2003, tend to Trevor in the hospital.

During those times, she misses Mom, Dad and Trevor.

"It's really hard," Emily says.

Sibling concerns

That's often the story of healthy siblings in families with a chronically ill child. They get passed around among extended family members and friends, and they may end up feeling they're not only left out, but less important than the ill child.

"Many feel angry, then they feel guilty because they're angry," Malone says. That's especially true with older children, who know that rationally they shouldn't feel that way, but they do. "They're still kids and need attention."

The age of a child does not increase or diminish the impact of a sibling's illness. But it does change how it is felt and expressed.

Small children worry about their own needs. So a 5-year-old may worry first about "who's going to take care of me." Children that age are pretty self-centered, says Malone, and they're supposed to be.

A child who's 8 or 10 sees the world in a more complicated way. They're developing cognitively and beginning to understand some of the implications. "They may have the sense their family is different. And worry, 'What if this happens? What if they die,"' Malone says.

One of the biggest challenges for families with older children is allowing them to be children. Often, those in their teens and even younger are thrust into a pseudo-parental role they're not ready to assume. A child who dreams only of joining the swim team and hanging out with friends may instead be responsible for feeding and supervising younger brothers and sisters while Mom and Dad are at the hospital.

Those older children also tend to stuff their feelings inside, so they won't seem socially inappropriate. Parents do that, too. And they all run the risk of depression. Behavioral changes or problems in school are a red flag that children are struggling.

"Sometimes it's just a matter of stopping and regrouping, of talking as a family. You may need to mobilize more support for that child. Often, I recommend parents let the school know what's going on so the teacher or counselor can offer some additional support. They're pretty good about that."

Learning to cope