Balancing Act: Parents Weigh in on Sibling Issues

Julio and his auntJulio and his aunt

It can be hard to balance the needs of all your kids — especially when one of your children requires intensive medical care. We asked parents to share their tips for helping children cope with a sibling’s PH diagnosis.

Having Time for Everyone

Support network. Everyone can play a role in helping kids cope with PH in the family. When Britt’s 4-year-old daughter was diagnosed with PH, Britt and her husband were concerned about helping their 8-year-old cope. “We notified Gracie’s Brownie troop, teachers, our friends, neighbors, and family and asked that they give any time they could to Grace,” Britt shared. “Read, take her places, play dates, movies, sit and talk — anything that would make her feel loved, especially during the times Mommy and Daddy couldn’t be around.”

Celebrate accomplishments. If you can’t be there in person, find ways to let children know you’re thinking of them and celebrating with them. “I missed Sydney’s last day of elementary school because Brooke was having heart surgery hours away,” Billie told us. “I had a limo pick up Sydney and her friends from school and take them out for pizza and ice cream.”

Turn medical trips into vacation opportunities. “Since we no longer can afford to travel very far for family vacations, I usually ask if either of the kids wants to go on the medical trips to New York,” said Billie, who has two kids in addition to her daughter with PH. “All three kids have been able to take turns bringing a friend to New York. There is usually plenty of time for some fun before and after the tests.”

Life Lessons

Offer broader lessons. “I think it’s important that [our 10-year-old son] learns that people are sick and have challenges,” Mitzi said. “I want him to be accepting of all people and not to look the other way when people need help. Empathy is an important quality!”

Bring perspective. “We have been very open and honest with [our kids],” commented Billie. “They have asked if their sister is going to die. I always say that we are all going to die and none of us knows when. She could live longer than any of us. It’s not for us to decide or worry about. We should just be happy for today and that we have each other!”

Responsibility, Sacrifice and Sibling Rivalry

Remind them how much they contribute. When Pam’s daughter Julie was diagnosed with PH, Pam wanted to find a way to use her son’s interests to help him feel good about his role as a caregiver to Julie. “We talked to our son about what it is to be an unsung hero,” Pam told us. With a father in the military, Pam’s kids understand that heroes often sacrifice their needs for the greater good of others. “You are a hero to Julie,” Pam explained to her son. “You have to help out extra every day and you often go without so that she can be treated at the hospital. Perhaps we should focus on your strengths and weakness so we know what kind of super-hero you are.” Pam bought her son a “how-todraw-a-super-hero” book and some tracing paper. “It was a good beginning for him to discover who he would become,” Pam shared. “It helped him focus on why he was important and less on ‘why does Julie have more?’"

Be fair when you can. “We make sure that both of our kids have an allowance they earned,” Pam advised. “They can spend within their limits on treats. This helps us cap the spoilage and keeps both children feeling it was a fair deal. If my son thinks my daughter is getting more than him, we will look at the receipts and compare expenditures."

Acknowledge that sometimes it’s unfair. “One of the hardest things is the inequity in chores and work levels,” Christina admitted. “Emily does get jealous [of her sister with PH] at times. The key to it all is communication and sometimes just telling Emily that life is unfair. I know as she gets older she’ll understand more.”

This article originally appeared in the Winter 2013 issue of Pathlight. PHA thanks all of the parents who offered input on issues and tips for this article. Read more recommendations

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