PH Caregivers, Family Members & Spouses

[Colleen Steele]

I’ve belonged to a support group for families of children with PH since my son was diagnosed. A concern that I have had and so many other parents have expressed is the worry of how much the PH experience with have an effect on the healthy siblings. What kind of adult will they grow up to be?

Cullen’s brother, Aidan is about to turn 21. In a recent column I interview him and asked him to share how he is doing now that he is an adult. In my opinion, he is doing very well. There are moments when it’s obvious to me that he has seen a lot of tragedy in his life but for the most part, he uses the experiences in a positive way.

My goal in writing this column is to give other parents hope that their healthy siblings won’t grow up to be damaged adults due to what they have witnessed and gone through.

Link to column: PH Sibling’s Journey from Childhood to Adulthood

Have you experienced similar concerns? What is your perspective on this topic?

[Jen Cueva]

As I read this, tears flow down my cheek, @colleensteele. You and Brian have raised two amazing young men. This speaks volumes to the parents that you are.

When Aidan shares, “At some point, I realized everyone has memories of childhood challenges, but everyone also has to grow up and learn to cope with their anger, or they will be grumpy, miserable people for the rest of their lives.”- this is spot on! What an intelligent young man to learn this at such a young age. This adulthood and his upbringing will undoubtedly carry him well on his way into his 20s and the rest of his life.

But to answer this question, yes, I often question myself if my sites became jealous in some ways when I was diagnosed with PH. I am sure they discussed my mom’s concern for me with them both. Plus, my relationships with them have not been so close since my PH diagnosis.

This is a bit backward because we were not young kids when I was diagnosed. We were all adults. But I know that having a sibling with PH can affect the family as a whole, extended family.

Happy 21st Birthday to Aidan on Monday. You should be incredibly proud of your boys, as I know you are. This piece is a beautiful tribute to Aidan, my friend.

[Author]

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