I’m Joe Schroeter and have had the honor of working with Jessies Heart Foundation, JC Heinen its
founder and Kathy Lawless one of its key board members for several years. My involvement came in
part from my experience having a son with a congenital heart condition and along this path learned
many lessons. One, was learned with my daughter Anya and culminated writing a book with her that we
published late this spring. I’d like to provide a little of the backstory as to why we decided to write that
book together.
When my son Alex was 12, he was diagnosed with Long QT1 a genetic disorder that impacts the
relaxing of the heart between heartbeats that increases the QT interval. This condition was discovered
when he had a cardiac event while swimming lengths of a pool underwater with friends. That incident
triggered a series of events including the initial diagnosis, several trips to the Mayo Clinic in Rochester,
complications from medication, and ultimately performing a medical procedure that thankfully leaves
him in a relatively low risk profile for those with Long QT1.
When a chronic condition is uncovered, particularly when one of your children’s lives comes
under question, it changes the entire type of attention, emotion, and perception of needs across the
family. As you might expect, all the focus goes to supporting the child with the diagnosis, the condition,
the obvious need. In our case, our other children stepped up to support their brother like heroes! They
sacrificed many of their own needs for attention and made sure they were there for their brother. What
we did not realize in the moment was that we missed the very real needs of Alex’s supportive siblings.
We forgot that they had their own significant needs as children.
When my daughter moved into her late teens, we went on a journey back to understand her
experiences and met some of those needs we missed. As a part of that journey, I asked her what story
she would like to tell kids that were in a position such as hers and thus Piper Learns to Fly was born.
We wrote Piper for those siblings of children with congenital heart defects, chronic conditions, and
injuries that have profound impact on their family. The message to their parents is that all their kid’s
needs are important to address. Siblings need to be encouraged and supported as much as the children
with chronic conditions. As parents we strive to be proactive in giving the desired attention needed to all
our children and help them meet challenges with our full support so they can fly like Piper.
Joe Schroeter
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