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What about me? Growing up with a seriously sick sibling

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

Children need some control. Doctors tend to "speak around" patients who are young or old. Siblings get overlooked. It's important that youngsters get a chance to speak up, to ask, to relate. Otherwise, it can ramp up the resentment or fear or loneliness a child feels.

No matter how serious the illness is, Bartell says, do not let it be the only thing happening in the siblings' lives. Parents need to ask what's going on with them and talk about other things.

A child who feels left behind may become angry, Bartell says, and instead of viewing his brother as sick might see him as privileged. It kicks off "a crazy cycle of the parent mad at the kid for being mad at the other kid who is sick." Parents who always excuse an ill child from doing tasks like clearing the table fuel resentment. It's not good for the sick child, either.

"It's better, sick or not, if you make them do what they should if they can," Bartell said.

Being angry isn't the same as being mean or insensitive. An angry child struggles and someone needs to notice, says Bartell, who tells parents not to make well children give up everything because a sick child had to. "Acknowledge that it's hard for them and give them opportunities to do things a bit differently in other places."

Juggling

Some families go to great lengths to see that the children who aren't sick get time with mom and dad. Allison Flash would stay with Sara, then race on Tuesdays to do her volunteer shift in her sons' classes, same as always.

It's a lot harder if you don't have family and friends nearby. Technologies have opened doors that didn't exist not long ago. Wendy Magera Skypes with her husband and children in Montana every other night from Sarah's hospital room.

Couples often split time between their children and, though they seldom see each other, they meet the need to be with the sick child while keeping some normalcy at home. That's what Liz and Jay Scott did after their baby daughter, Alex, was diagnosed with neuroblastoma. The Wynnewood, Penn., couple spent seven years juggling hospital and home, someone always with their young boys. Often, they ate as family in the hospital cafeteria.

Alex died when she was 8. She is well-remembered as the tiny founder of Alex's Lemonade Stand. She raised money for childhood cancer research, and the tradition continues through a foundation by that name.

Krolle knows families that "assign people — an uncle, aunt, friend, etc. — specifically to pay attention to the siblings."

No two families cope the same. When Anne Hamming's son Lee was fighting an autoimmune disease and needed a bone marrow transplant at age 4, Hamming, who was divorced, sent daughter Katie, 7, to live with grandparents an hour from their Grand Rapids, Mich., home and 400 miles from the hospital. It was the only solution she had. They'd been told Lee would be in or near the hospital for at least six months. The separation lasted 15 months, though they visited. They attended her 8th birthday party by Skype.

Extended family doted on Katie to the point Hamming worried she wouldn't want to come home: "She actually got a little spoiled." Hamming, who wrote "Saving Lee, Finding Grace," worried it would be hard to bring the two kids back together. It was. Post-illness, they were three greatly changed people who needed new ways to do things.

Lee, 9, is still catching up with peers. Katie, 11, is adapting to a brother who is more rough-and-tumble than she is used to.

Offering help

Outsiders and sometimes even those close to a family struggle with how best to provide the help they yearn to offer. The families themselves are equally befuddled on how to ask for what they need. Kevorkian suggests parents ask someone to be their voice and round up the troops as needed. If you want to help, offer to do specific tasks.

Teachers and others who interact with siblings can be very useful, providing ears and eyes in school to be sure that a sibling isn't lost when a child ails. Grief counseling can help, Kevorkian said. Dreams and goals might have to be revised.

One of the best helps is not overstepping, families who've gone through crisis say. Don't, for example, assume that parents have had the same conversations you'd have with your kids. The Flash family has an online page for updates and support. One friend posted, "I know you'll survive this." That was how Sara learned she might die. The family had been focusing on treatment.

"It is scary enough to go through cancer treatment without having to fear dying at age 12. I never, ever lie to my children," said Allison Flash. "But I believe there's a line between a responsible and irresponsible amount of information."

If communication is open, patients and siblings get support. If they can talk about love and fears and what they're going through, Kevorkian says families do OK. "This is the launching pad for how the healthy children end up coping with loss, probably for the rest of their lives."

EMAIL: lois@desnews.com, Twitter: Loisco

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