What about me? Growing up with a seriously sick sibling

Published: Saturday, Feb. 16 2013 6:00 a.m. MST

Sick children often receive gifts to cheer them up; siblings can feel left out there, too. Their lives are heavily impacted, though they may not recognize the physical suffering of the child who's sick. Some siblings miss activities because stressed parents can't get them there. Older kids may be asked to tend younger kids more. Or children might not be able to have friends over or go play for fear of catching something that could harm the sick child.

That's periodically the story for the children of David and Lu Simonsen of Olympia, Wash. Their youngest, Sophia, 2, has leukemia. The other five kids, ages 5 to 14, sometimes must skip activities because chemotherapy makes Sophia vulnerable. David Simonsen reminds them it's only for a few months, but says their reactions vary. One daughter wants to hang out with friends but would rather stay home than wear a face mask; his son dons one without fuss.

Plus, everywhere healthy siblings go or each time they answer the telephone, it's "'How's your brother doing?'" says Krolle. "They wish someone'd ask about them."

David Simonsen, a therapist, was struck recently by a conversation with children in the family of a gravely ill teen. Two little sisters, 8 and 10, sometimes think their older sister should die, though it's not clear they understand what that means. They want their parents back.

Other children become protective — even over-protective — of a sick sibling. Heather Magera is like that. "She's had a harder time because she is the sweetest, most giving child," Wendy Magera says. At 9, she wants to take care of everyone and anger no one. "The 3-year-old demands attention there. Sarah gets attention here. It's hard for the middle kid, trying to be strong for everybody."

Jason Magera says Heather's grandparents do special things with her, and when they visit Salt Lake, child life specialists talk to her about Sarah and answer her questions.

Other resources for the siblings may be harder to come by, depending on where one lives. Gilda's Club, for example, has chapters scattered around the country that offer support to family members of someone who has cancer. Salt Lake's Cancer Wellness House is one of many in the country offering support or discussion groups for "caregivers/family/friends." Some are more targeted to youngsters than others. But there are wide geographic gaps where there's nothing nearby for the brothers and sisters when a child is ill, or families may be hard-pressed to get the siblings into a support program given the demands made by getting the sick child to treatment.

Other groups offer activities for both the sick child and siblings in different health categories. "Camps" for kids, based on diagnosis, and their siblings have proliferated. You can find them for children with kidney or bone disease, burns and heart problems, among others. Flying Horse Farms, for example, in Columbus, Ohio, offered a sibling camp last summer related to arthritis, asthma, sickle cell anemia, hemophilia, cancer, gastrointestinal disorders, and kidney and heart diseases. Those tend to be a one-shot boost lasting a few days, and they also usually hinge on the sibling who has the illness being well enough to attend. So while they're helpful and fun, they don't help the siblings — who some refer to as "shadow children" — get through day to day.

Honest discussion

Kristine Kevorkian, a trained end-of-life expert known as a thanatologist, in Seattle, says families need to discuss what is happening with the siblings. With a child, it should be age-appropriate and as specific as possible.

"It's not, 'Grandma went to sleep and she died.' That makes sleep scary," she said. "Explain in detail. Ask children and adults to repeat it to make sure it was understood."

If you don't tell children what's happening, they will fill in blanks, and they usually get it wrong, she says.

Krolle says to be hopeful and honest, even when the news is bad. "We don't know what is going to happen, but the doctors are doing everything they can and will continue to."

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