Like many younger siblings, Ava Bleifuss, 9, sometimes gets jealous of her older sister Rui Rui, 12. But it’s not always for the expected reasons.
“Ava will pretty often say, ‘It’s not fair!’” said her mother, Sherry Kempf. Rui Rui has a degenerative neuromuscular disease called Sharcot-Marie-Tooth, which limits the strength in her hands, her ability to walk, and her balance. She wears braces on her legs to help her get around.
Kempf understands that it’s developmentally normal for children to be jealous of their siblings, but there are times when she feels Ava’s envy is misplaced.
“What’s not fair?” Kempf asks her youngest daughter. “That Rui Rui can’t walk? That you get to go to a jumpy house and she doesn’t?’ Rui Rui gets to sit and be on the iPhone while her sister runs around and plays with her friends. Ava’s response is, ‘No fair. Rui Rui gets to be on the iPhone.’ It can be a little frustrating.”
As she nears middle school, Ava’s feelings about her sister have been becoming more complex, and Sherry and her husband, Ethan Bleifuss, have been at a loss about what to do.
“Rui Rui drops things a lot,” Kempf as an example. “Her hand strength is getting weaker and weaker. When she needs to pick something up for her sister, Ava will sigh and say, ‘I’m her maid.’ She expresses a feeling of things not being fair in our family in terms of Ava not being treated well. I’ll end up saying things like, ‘Yes, it’s not fair that your sister can’t walk and you get to do all these fun things.’ The reality is Rui Rui needs more help and Ava needs less. You want to be fair but it’s not always equal. How do you deal with that as a parent?”
This past winter, Bleifuss read about a new support group for able-bodied siblings of children with serious medical complexities like Rui Rui’s. The group was being held at Pediatric Home Service (PHS), a Roseville-based agency that provides home-care services for children. He called his wife with the news.
“We were excited,” Kempf said. “I called that day and signed Ava up.”
Desperately seeking support
Kempf and Beifuss have long been frustrated by what they see as a lack of support options available for families like theirs, so they were excited to get their youngest daughter involved with a group of kids who face some of the same challenges that she does.
“Ava doesn’t always know how to process her situation,” Kempf said. “I don’t blame her. Ethan and I don’t always know how to process it, either. That’s why that sibling group has been so tremendous for her.”
The inaugural group was held at PHS’ offices. It was small: just four kids in first to third grade. First, the children met alone with group facilitator, Monica Handlos MSW, LICSW, and then played with an intern for 15 minutes or so as Handlos told parents about what their children had discussed during group discussion. “I tried to cover some of the coping mechanisms that I had discussed with the kids,” she said.
Handlos said that the young participants quickly realized the connections they had with each other.
“On the very first day I had them all introduce who they were and talk about their siblings,” she said. “We talked about their siblings and what their challenges looked like. You could see the light bulbs going off in these kids’ minds. They were thinking, ‘Oh, my gosh. They understand me.’ It was an instant connection, a feeling of ‘I’m not alone.’ You could see that from Day 1. The connection developed as they moved forward.”
The connection was so strong that the families didn’t want to stop meeting after the session was up. Parents asked Handlos if they could extend their time.
“We ended up adding an additional group this summer for 6 weeks with the same kids,” Handlos said.
‘We’re finally in a group’
Families like hers are hungry for connection, Kempf said. For Ava, it was an opportunity to spend time with other kids who understand what it feels like to be pulled along on your sister’s many doctor appointments, or to feel a strange combination of jealousy and guilt when your sibling has to go to the hospital for yet one more medical procedure.
“This was this magical moment of, ‘We’re finally in a group,’ ” Kempf said with a laugh. “Ava saw it as a way to connect with other kids. She’s not always that big on talking about feelings, but in this group she felt comfortable. It was very important to her.”
The feeling of connection and shared experience is also important for parents, Handlos said. Raising a disabled child can feel isolating. And when your child has a degenerative condition like Rui Rui, parents face unique questions and challenges.
“The families in this group have children with different diagnoses,” Handlos said, “but what they had in common was an understanding of how difficult it is to navigate stressors like doctor’s appointments and therapy sessions for one child while caring for another. Being together in a group like this builds a natural understanding and sense of respect.”
This group will soon be coming to an end, and Kempf said that she is already preparing herself for a sense of loss.
“Even though the group is over, the kids’ needs don’t go away,” she said. “It’s a little sad. Here’s this great group. They’ve taught these kids some important skills. But now they have to say, ‘It’s over.’ I know it’s someone else’s turn, but we all still need this resource.”
Finding their own way
Kempf has looked around for similar groups that her family could join, but so far she hasn’t found anything.
“It’s interesting,” she said, ruefully. “Look at where we live. We are so fortunate to have the resources we do for Rui Rui here in the Twin Cities, but where are the resources for the rest of her family? Where are the resources for Ava? Why does my husband have to read an article in MinnPost to hear about a group like this?”
Handlos said she is trying to help families wrap up the support group on a productive note.
“I’m building in some positive closure,” she said. “I know we can’t continue forever. I’m encouraging parents to exchange phone numbers so that they can continue the relationship after the group is done. And if families are concerned about an individual child, we can do individual therapy here.”
Kempf, who works as a teacher in St. Paul Public Schools, has been casting around for her own way to extend her family’s positive experience at PHS. There is no local branch of the Charcot-Marie-Tooth Association, so the family has been involved in the Minnesota branch of the Muscular Dystrophy Association (MDA). The group has been a great for Rui Rui, Kempf emphasized: Through MDA, they’ve met other families with similar situations, but the support for Ava is limited.
Sometimes, Kempf thinks about starting a support organization for families like hers, one that provides support for every member, including the able-bodied siblings that often get lost in the shuffle.
“I would like to start a group,” she said. “But I’m not there yet. I don’t know if I can do it all by myself.” She paused, and then added, wryly, “Maybe if I found someone else who was also in the same situation. I’d love to connect with other families in this situation and see what we can do together.”
Until then, Kempf said she and her family will keep in touch with the families they met at the PHS group. For everyone’s sake, they hope to keep the connections strong.
As Kempf’s group wraps up, Handlos will be preparing for a second sibling-support group at PHS, which is scheduled to start Sept. 13. The group will be open to six kids, with a signup deadline of Sept. 2.
“In group, the kids and I talked about a bunch of different feelings and developing coping mechanisms for dealing with those feelings when they appear down the road,” Handlos said. “We’re focusing on coping mechanisms because this is a short-term program with long-term effects. We want to make sure that kids and families have the resources they’ll need going into the future. We know it’s important, and we want to help these families stay strong.”
Families interested in learning more about PHS’ sibling-support groups can go to its website.