MOUNT HOREB, Wis. -- When a critical illness strikes a child, the emotional, physical and mental toll can be staggering on family members.

VIDEO: Watch The Report

Parents are often so consumed caring for the sick child that they can think of nothing else, including their other children.

"If you were to ask the parents how their children at home are doing, they would say, 'Fine, they're with grandma, going to the zoo,'" said University of Wisconsin Child Life Director Mary Kaminski. "If you were to ask the school teacher, they would say, 'They're not paying attention, they're daydreaming, they're behaviorally upsetting the class.'"

Grace Hime, 13, of Mount Horeb, has lived her entire life in the shadow of her sister's lifelong battle with cystic fibrosis.

"I thought she was so lucky she always got to go to the hospital," said Grace. "I thought that was practically a hotel because you got free food and all sorts of stuff."

"The sibling may think, 'Well, they're spending all this time with them. They must like them better than me,'" said Kaminski.

In reality, that is the opposite of what parents are thinking.

Grace said that many times, people will ask how her sister is doing and unintentionally neglect to ask her how she is doing.

"They ask a lot of questions like, 'How is your sister doing?'" said Grace. "They say it a lot and sometimes it gets annoying."

"Just listening to her come home and hearing the frustration about, 'Well, everyone wants to know about Sarah.' Those things really stick with me," said Bill Hime, father of both girls.

The Himes turned the attention spotlight on Grace and made sure everything between the sisters was equal, WISC-TV reported.

"You are acutely aware of it and you are constantly, in those quiet moments, judging yourself," said Bill Hime. "You try to make it as even as you can and because you're so aware of it, you can tend to be a little overzealous."

That acute awareness led the Himes to put Grace in counseling in third grade.

What they soon realized was that Grace didn't need counseling; she needed special time with her parents and especially, her sister.

"One person we've always been most concerned about is Grace," said Hime. "That's what people forget."

Experts said that the Himes are the exception to the rule. In the midst of medical crisis, most healthy siblings take a backseat both physically and emotionally.

A few years ago, the Tracy family lost their 18-month-old son Tyler after a lengthy medical battle.

"We kind of lost track of what was going on with Austin and Mikayla," said Jeff Tracy. "We did the best we could just to get by."

"I feel I missed Mikayla's whole preschool year and time," said Kristin Tracy. "Austin was 2 and Mikayla was 4, so I feel like I missed his whole second year. It was very traumatic."

The family spent most of Tyler's 18 months running to the hospital. Their two preschool-aged children shuffled to friends and family.

"We probably neglected to realize that they were impacted by what was going on," said Jeff Tracy.

"The one absolute is that they continue to age," said Bill Hime. "They continue to grow and mature and become their own person. You'll either be a part of it or you'll miss it, because it's going to happen one way or another."

Child experts said that maintaining that parent-child bond is critical despite the mental and emotional exhaustion of the parents.

"If the sibling does not survive the process, what have you done to continue to build the one who is left behind?" said Hime. "What have you given them to work with? Now do you suddenly have to get to know them because you failed to grow with them? That's a lot of ground you may not be able to make up."

UW Hospital has a program that works directly with siblings. Club Sib uses art and games to reach out to kids and give them a fun break from their brother or sister's hospital room, WISC-TV reported.

Club Sib meets every Thursday night. Some children play games like Jenga and made a wall mural. Child Life experts run the program. They said that during that type of play, children sometimes ask the most profound questions about their sick brother or sister.

"It's the time the child is telling the parent, or us, 'I want to talk with you about this,'" said Kaminski. "'And if you don’t talk to me about it now I may not want to talk with you about it again.'"

It's a rare window of opportunity.

"If you lose the opportunity and you don't take it and respond to it, then the message to the child is, 'I'm not important. They didn't hear me," said Kaminski.

Grace Hime's family has made sure she has been seen and heard.

When the family moved to Mount Horeb two years ago, her sister wasn't attending school. She started school for the first time as Grace, not Sarah's sister. She didn't mention her sister's illness to anyone.

"Just because it's me," said Grace Hime. "It's not all about her. It never really has been. It's always been about the both of us, but I still want to keep my own identity. There's really no reason that everybody has to know that my sister is sick."

The spunky teen aspires to be a famous chef with her own show on The Food Network. She has her own hopes and dreams even though she shares a dramatic reality, WISC-TV reported.

"She's making her own identity right now," said Bill Hime. "She does not need to be Sara's sister. She needs to be Grace."

The Himes and Tracys agree that it is crucial for families to spend special one-on-one time with their other children and as husband and wife.

"In the middle of all the chaos that's going on, those other kids need a little bit of your time," said Jeff Tracy. "It will be good for the parents, it will be good for the kids, and in the long run it will be good for the sick child too."

Tyler's Place

The Tracy's hospital experience inspired them to leave a living legacy.

When it opens in July, the new American Family Children's Hospital will be one of only a few hospitals in the country to have a sibling care center, WISC-TV reported.

"We saw the need grow out of our own experience," said Jeff Tracy.

When their infant son, Tyler, required repeat hospitalizations, their then 2- and 3-year-old children were sometimes brought along.

"A hospital room full of IV poles, monitors, leads, scans and x-rays is really a terrible place for young children to find mischief. They get themselves in a situation where they get bored quickly," Tracy said.

There was not a care center for their children to play, while mom and dad spent time with the sick child.

When Tyler died, they channeled their grief into leaving a legacy to help other families. They worked tirelessly to convince hospital officials there was a need for a sibling care center, so Tyler's Place was born.

"We saw other families in the hospital coping with what we were coping with," said Tracy.

Tyler's Place will sit on the main floor of the new hospital and offer children ages 2 and up a safe, warm place to play while their parents are in the hospital.

"I hope other children meet other children," said Kristin Tracy. "That they make some valued friendships or maybe ask questions and get to know each other."

"Keeping the children at arms length," said Jeff Tracy. "When they need to be away from what is going on and need to be with their sick child, but close enough that when they need to have them there to bring the family together, is really important."

There will be computers, games, toys and a reading nook in a symbolic lighthouse.

"I hope families use Tyler's Place to escape the sadness in hospital rooms and focus, even if for a moment in the happiness of healthy children and laughter," said Jeff Tracy.

The Tracys committed to raising $200,000 to make Tyler's Place a reality and so far, they have raised $60,000.

They are holding the Beacon of Hope golf outing on June 11 to raise further funds for the center, WISC-TV reported.

Super Sibs

The need for sibling recognition is getting national attention. Super Sibs is a national organization with more than 10,000 members regionally.

The organization sends monthly care packages for siblings, WISC-TV reported.

Related Links:

The Epilepsy Foundation of South Centeral Wisconsin also hosts sibling nights for families affected by epilepsy. For more information call, 608-442-5555.
The Beacon of Hope Golf Outing. The event benefits Tyler's Place.
UW Sibling Kids Activity Booklet