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Why You Shouldn't Let Your Scars Shine Brighter Than Your Heart

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I’ve grown up hearing how blessed I was, how they prayed for when I was a baby and I’ve seen the pictures in my photo album. When I got older, my parents never sat me down and told me the whole story, I just put the pieces of small stories they told me over the years together. I’m glad that I only have the stories to go off of, and that I don’t remember any of my surgeries. All I know is what it was like growing up with this rare heart condition. I realize the older I get, the more hypoplastic left heart syndrome (HLHS) has truly changed my life.

As a kid, I never saw myself as “different.” Sure, I have my fair share of scars, but I didn’t know it wasn’t “normal” to have a line divide my chest. In fact, when I looked at myself in the mirror, most of the time I looked right past the scars. This sounds like a good thing, right? It’s better to not let my struggles and past define me. Wrong.

If I look beyond the struggles and scars, I would be ignoring a huge part of my life. It is one thing to be defined by my heart condition, and it’s another to let my heart condition help shape me for who I am. I’m not writing this to get petty likes because I want you to feel sorry for the Heart Kid, but because I want you to know that there is hope in the world, especially for my fellow heart babies.

My last surgery was 17 years ago, and I am a survivor of HLHS. But like I’ve said, I don’t remember anything from my heart surgeries and doctor’s appointments (at least the doctor appointments before the age of 8). What I do remember is having to quit basketball and gym class because I was having a hard time breathing after running so much. I remember people staring and asking about my scar, having to decline a Coke or any other drink with caffeine, having to stay behind from my friends’ camps because of the high elevation, getting colder in the water at all the pool parties and having to go to bed earlier because I need more sleep than others. I remember questioning why I was born with this heart condition and crying in my room saying that it wasn’t fair, and I just wanted to be a “normal” teenager. I feel like everyone goes through an “it’s not fair” phase, but when you’re letting your scars shine brighter than your heart, it seems like the end of the world.

If you are a heart survivor or a parent of a heart survivor, I want to share a couple of things with you that changed the way I think about my heart condition:

  1. Don’t let your heart condition become who you are. It’s part of your story, it’s not you. Everyone has their own story and this is yours. You may not feel “normal”— but that’s OK. You’re a heart baby. Say it with a confident smile because you are a miracle that beat all odds against you, which is part of a pretty cool story.
  2. Don’t let your limitations stop you. Live your life to the fullest! You might not be able to drink coffee with friends—so order an Italian cream soda. You might not be able to play your favorite sport—so get into photography and take pictures at the games. You will have limitations, but they are not shutting your life down, they are merely just another obstacle to get over. People are going to treat you differently—don’t let them. People are going to feel sorry for you—don’t let them. People are going to tell you that you can’t do something—prove them wrong while keeping your limitations in mind (don’t over-do it and hurt your health even more; being determined is a good thing to an extent.) Be who you truly are.
  3. Don’t give up. It would be very easy to become a couch potato complaining every day and having people feel sorry for you. Instead, you should live your life without fear and dream big. Dream about your future: what do you want to be when you grow up? What college do you want to go to? Don’t let the odds and statistics scare you from being a dreamer. If you want something, then go out and earn it. Earn A’s in school, take the lead role in the musical, get a high school diploma—because you deserve it! Also, don’t give up on today. If you are reading this, try and be grateful for today. You’ll never get this day again, so make it count. You’ve made it this far; keep going.
  4. Lastly, please know that you are not alone. If you have HLHS, I understand what you are going through. More HLHS babies are being born which means our community is getting bigger and has more support. I am a junior in college who loves to work, dance, hang out with friends, rock climb, laugh and have a good time. Hypoplastic left heart syndrome is a part of my story and I wouldn’t trade it for anything.
Originally published: March 28, 2019
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