Blog, Congenital Heart Defects

Why Awareness Walks Matter

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If you’re new around here, you probably have no idea who Riley Marie is.  Riley Marie is my best friend’s daughter.  She would have been just over three years old, dancing next to Callie at this year’s dance recital.  Sweet Riley Marie was taken from us the Monday after Thanksgiving a year and a half ago.  Riley lost her battle with a severe heart defect, Hypoplastic Left Heart Syndrome, or HLHS.  When she was born, she had an additional issue.  She had an intact septum.  This made the very first seconds of her life critical.  Her mom was one of a handful of women who had a scheduled c-section in the local children’s hospital so that Riley could be immediately taken to the cath lab for a heart cath.  This was necessary for her survival and to get her to her first major heart surgery.  After dozens of surgeries, procedures, heart caths, setbacks, and time spent in the hospital, Riley Marie’s body finally gave up, but not before seriously positively impacting every single person who crossed her path.  You can read more about my experiences with Riley here.  You can read more about her passing here.

Before Riley’s diagnosis and birth, I never really understood the point of the different awareness walks.  Call it selfish, call it uneducated, call it whatever you want.  It’s just that no one in my life prior to Katie was ever involved in specific walks.  Once receiving Riley’s diagnosis and trying to be there for my best friend while she and her husband attempted to navigate uncharted territory, I began to realize just how important these awareness walks are.

The main goal of these walks is to raise money for research and to raise awareness.  The idea is that affected individuals and all their friends, families, co-workers, and acquaintances rally together, raise money, and talk about the particular illness.  Thanks to social media, awareness is the easy part.  It’s also pretty easy to collect money these days with just a little bit of effort.

Preparing for and attending my first Congenital Heart Defect walk showed me that walks are so much more than money and awareness.  These walks give affected individuals and their support systems a huge network of people.  People who they can vent to, find comfort in, ask opinions of, and form a new kind of normal with.  None of these people asked to be there.  But once they are there, they find hope through other stories.  They find inspiration to make it through the next day.  They find the courage and persistence to advocate for their child.

I will never pretend to know everything about CHDs, and I will never pretend to know anything about raising a child with a CHD.  What I will say, is that Riley taught me a lot.  She taught me the importance of understanding what others may be going through.  She taught me that life is vulnerable and unpredictable.  She taught me that sometimes the bravest people in our world are some of the smallest.

If this touched you at all, please consider following this link to donate money to this year’s upcoming Indianapolis CHD walk.  Our team for the last two years has been Broken Hearts Walking Together.  It’s a huge team of people walking in memory of CHD angels, who no longer walk beside us, but fly above us. No parents deserve to be part of this team. I’m glad they have each other. They experience a pain that no one who hasn’t walked in their shoes could ever fathom. By contributing to the CHD Walk, you can help prevent more children, babies, from leaving their parents far before their parents are ready.

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Until next time…

“Sometimes, real superheroes live in the hearts of small children fighting big battles.”

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