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Parenting PH Kids & Siblings

Advice from a Support Group Leader

Dawn Butler is the mom of 6-year-old PH patient Stella and 11-year-old Simon. Dawn is also the support group leader of the new Philadelphia Pediatric PH Support Group. PHA connected with Dawn recently to talk about how she balances the needs of a child with PH with the needs of a sibling and what she hopes to bring to her role as a support group leader.

Dawn Butler and her familyTell us about your experience growing up with a sibling who has a chronic condition and what take-away lessons you bring to your parenting.

My sister Christina was born with Cerebral Palsy. I was the oldest sibling and my parents needed my help in taking care of my sister. There were times when I resented this because my friends would make plans to get together after school and I could never participate. It was also hard to watch my sister go through so many surgeries as a kid and have very painful post-surgery recoveries.

There is a great passage in the novel Wonder in which older sister Via says of younger brother August: “August is the Sun. Me and Mom and Dad are planets orbiting the Sun.” That quote resonated with me. I’m sure most siblings of children with medical conditions or disabilities feel that way. My son Simon read Wonder in school and said he felt that the parts of the book written by the sister describe his life.

Looking back, I think my parents were simply too overwhelmed to deal with my feelings when they had so much else going on with my sister’s care, medical bills, work, etc. And of course, my brother and I could sense my parents’ worry about an upcoming surgery or other issues related to Christina’s condition.

Knowing what it can be like, I don’t want Simon to feel that everything we do revolves around Stella. We want both kids to feel loved, encouraged and appreciated. We make a point of spending time with them together, but also doing special trips or days out so they can spend time alone with us. We are also careful to never say things like, “Sorry, we cannot play that game with you right now because we have to mix Stella’s Remodulin.” Instead, we say, “Yes, we definitely want to play that game with you tonight. Let’s do it at 8 p.m.” It’s sort of the same response, but we don’t want him to hear Stella’s name as the reason why he isn’t getting time with us.

We’ve also signed Simon up for a program called SibShops. We want Simon to have people he can talk to about how he feels as a sibling of a kid with a serious medical condition. It can be confusing. There are days when you feel angry or resentful, and there are days where you feel guilty for those feelings. Most of the time, you are somewhere in between. Having an outlet like SibShops is important.

We also make sure he has an age-appropriate understanding of PH. He doesn’t need to know everything yet, but if you asked, he could give you a fairly articulate description of PH. We have encouraged him to watch Remodulin mixes and dressing changes (while wearing a mask, of course) to help him understand things. He’s also been on a clinic visit with Stella to see all the tests she does there.

How are you bringing your experience to your new role as a PH support group leader?

One of my goals for the support group is to provide an outlet for the siblings of our PH kids. It would be like a SibShops meeting, but everyone’s sibling would have PH, so they’d have more in common. My hope is to have a childlife professional lead them in group discussion and games. But even if that doesn’t happen, I still think there is value in simply having them get together to talk. They have so much in common!

Is there any advice you can give to parents who have children with PH or other life-threatening diseases?

Reserve time and energy for your other kids. Allow them to be kids. Find someone they can talk to about their feelings. Read Wonder, particularly the chapters written from the sister’s perspective. It should be required reading for all of us!

This article originally appeared in the Fall 2014 issue of Pathlight.

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