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What My Congenital Heart Defect Has (and Hasn't) Taught Me

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I’m pretty open about my heart defect. It’s obviously a big part of my life, and I guess I’m just the type of person who talks openly about stuff like that.

My heart defect is such a big part of my life, actually, that it comes up pretty easily in conversation. Usually, I just say something along the lines of “…with my heart” or “…because of my health,” and then people ask, “what’s wrong with your heart?” and I get to say my favorite thing ever.

Seriously, the feeling I get when I say this one line is probably evil, but it makes me really happy. When people ask me about my heart, my first answer is, “I only have half a heart!” Without fail, I will watch the person I am talking to struggle to keep their mouth closed.

Of course, I don’t just leave them at that. If they ask for more detail, I give it to them.

“I was born with a form of hypoplastic left heart syndrome. Usually, people with this CHD have four chambers to their heart, but the left atrium and ventricle are smaller than they should be, but the left side of my atrium and ventricle just didn’t grow at all. Because of this, I only have one valve, and it doesn’t work all the way. I’ve had a lot of surgeries to help, but I’ll never be ‘fixed.’ Also, my atrium and ventricle don’t talk a lot, so I have a pacemaker.”

This is the part where the person I’m talking to tells me that I am, “soooo strong.”

It is such a kind thing to say — that I am strong and can get through it. But here’s the deal: I am such a baby. I am a wimp.

I don’t enjoy echos (sonograms of my heart and blood flow) because the tech has to push on my scar and my throat. I don’t enjoy getting labs done because needles have messed me up!

No matter how many people tell me how strong I am, I don’t feel it.

My heart defect hasn’t taught me strength or that I can do anything, because every time I’m faced with a new CHD challenge, I feel helpless.

My heart defect has taught me friendship, not strength. It has taught me that when you can’t be strong enough to face it, your friends can carry some of that weight for you. It will still be heavy, but you won’t be alone.

My heart defect has taught me courage, not strength. It has taught me that when you can’t be strong enough to do it confidently, you can still do it. It will still be scary, but it won’t be impossible.

My heart defect has taught me hope, not strength. It has taught me that when everything sucks, it will get better. It will still suck for a while, but not for forever.

This story originally appeared on A Meaningful Blog.

Originally published: September 26, 2020
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