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Why I'm Thankful for the Friends of My Son With Congenital Heart Disease

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My 12-year-old son just passed the six month anniversary of his fourth open-heart surgery (fifth surgery overall). Last week we took a road trip from Tampa, FL (where we live) to Cooperstown, NY where he played in a week long baseball tournament with his best friends. It was a once in a lifetime experience he talked about for years, but something that, quite frankly, I was worried might not be in the cards for my son.

I never told anyone — not my friends or family, and certainly not him — how worried I was his dream might be over. Like so many other  congenital heart disease (CHD) moms, my thoughts were consumed by questions, fear, worry and sadness.

You would think by now I would have known what to expect, but I should have known better. I’ve learned over time that each CHD child and each instance and experience is different. This time around — in some ways — was just as hard as his first surgery at just 13 hours old.

I see a lot of articles and blogs for parents about babies and toddlers going through the CHD experience and what that means. But no one really talks about what happens as time goes on for the kids who continue to need intervention.

This age is hard. You realize he’ll always love you, but it’s his friends that are starting to see him through. I didn’t realize how true this was until they saved him.

Unlike a young child, my son is educated on his history, he knew what the surgeries entailed, what the risks were. At 12, hormones and emotions now play a huge role. Watching his spirit break broke my heart. Depression. Hopelessness. No will to push. This isn’t my son, is it?

All we could do was encourage him. It took some time, but slowly we got our first smile. Then another. And eventually we went home.

But even then, it took more time. Going home just ushered in a new phase of insecurity for him. He had a new, bigger scar. He couldn’t play sports with his friends. I distinctly remember him saying to me, “I don’t think my friends are going to want to hang out with me anymore because I can’t do the things they want to do.”

Of course, this was not the case — in fact, it was the opposite. These boys — oh how I love these boys — lifted him up. They helped bring him back to us.

They called. They texted. They stopped by. They made him laugh. They changed the rules when he was around. But most of all, they never left him behind.

Having just returned from this once in a lifetime experience, I can tell you the first time he took the mound to pitch, I definitely shed some tears. They won together and lost together. But he was there with his baseball brothers, his best friends. It’s something they’ll never forget. They took in each and every moment not just as teammates but as best friends, the ones who never left him behind.

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Editor’s note: This story has been published with permission from the author’s son.

Originally published: June 16, 2017
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