Congenital Heart Disease and Me

Congenital heart disease. CHD for short. It is the number one birth defect, and I was born with it. It’s an interesting thing. CHD. There are about forty known types. However, CHDs are like snowflakes. No two are exactly the same. Someone can have the exact same CHD as another person, but the way they fight it and the way the body handles it can be totally different. CHD can cause emotions and physical issues, major or minor. I am blessed that any emotional or physical issue I’ve ever dealt with has been minor. Truth is, I see more good than bad in this disease. 

CHD patients may experience certain emotional issues. These issues can be minor or major. Some have separation anxiety. Some have trouble bonding. Some have depression. And that barely touches the surface. There are so many issues that can come with this disease, and they aren’t all emotional. Some CHD patients can’t ride rollercoasters, can’t do much exercise or sports, tire easily, and lack fine motor skills. 

Some kids grow up embarrassed of their zipper scar. Some kids are fearful of how long they have on this earth. Some kids are in the hospital constantly.

As a kid, I used to think that when I was older I wouldn’t get sick very often. I was deceived by the idea that adults were almost never sick. But you know something? Just because I become an adult, it doesn’t mean my CHD is going to go away. It doesn’t mean I’m never going to be sick again. It doesn’t mean I’m going to stop seeing a cardiologist. It doesn’t mean I’ll get to eat sushi. It doesn’t mean CHD won’t be a part of my life. It’s weird for me to think that I will one day be an adult with CHD. But I don’t know why I find it weird. I’ve always had it, so I’m real not sure why I find it weird.

But…

I don’t hate having heart disease. I don’t wish it would go away. Sure, I have certain times where I don’t feel like dealing with it or with the minor or superficial issues that come with it. But honestly, it really isn’t too bad for me. I’m very blessed. My CHD could’ve been way worse. I could’ve, and some might argue that I should’ve, died before the doctors even knew what my medical issues were. But here’s the thing: I didn’t die. And I didn’t not die for a reason. I’m here. I’m alive. My heart is beating.

At the age of about ten, I found out about Camp Taylor, an amazing non profit for kids and teens with CHD. And that summer, my life changed. It’s been about eight years since that wonderful summer, and my life truly has changed. I am now a Camp Taylor mentor, something I’ve dreamed of doing since I was little. Working with kids and families who are going through similar things I went through/still go through is an amazing thing. And I love doing it. This camp is where I’ve met some of my best friends. We consider each other a second family. A mother loved her son so much that she was willing to do whatever it took to help him understand his CHD was nothing to be ashamed of, and in doing so, she helped bring together a second family who understood the pros and cons of the number one birth defect.

I have a second family through this camp. I understand my CHD because of this camp. I’ve learned to advocate for myself. I’ve become proud of my zipper scar. My life has changed.

People have seen inspiration in me. I’ve done things doctors didn’t think I would do. I am willing to test the limits. I am willing to go against the odds.

I love life. Though I sometimes do, I try not to take it for granted. I know it can go from good to bad, and bad to good in the blink of an eye. I love trying new things and going on adventures. I love thinking about things.

But don’t let this post deceive you. There’s more to me than just CHD. I love God. I love to write. Pigs are my favorite animal. I love glitter and pink and I think tutus are fun to wear(believe it or not, I am seventeen). I think pink roses are beautiful, and I constantly say the sky is pretty. I have an interest in astronomy and I love the city of Nashville. I love country music. Chocolate strawberries are good any time of day. I think love and kindness are so important. I believe it is very important to stand by your morals and beliefs. I love quotes and I love songs with a good message. Nicholas Sparks is my favorite author. I love kids. Law and Order: Special Victims Unit is my favorite show. I like to perform and I like to work out. I think make up is fun to wear. I love developing my own thoughts, and I like using examples to explain what I think. I think sarcasm is fun to use, and I love deep conversations. And that’s not all. There’s so much more. And not all of it has to do with CHD.

CHD has caused me to have minor emotional issues and minor physical issues that not everyone can understand. But CHD has also been part of the reason I’ve been on this crazy, fun ride. There are tough days, but don’t let those tough days deceive you. Because I promise you, the good days outweigh the bad ones. I am more than okay. I am blessed❤

A few of my best friends and I from the mentor workshop this past weekend

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2 thoughts on “Congenital Heart Disease and Me

  1. Juan felix says:

    God bless you forever. I’m dealing with this with my fourth child and he is only 6 days old. He just had the tapvr surgery and will deal with the single ventricle issues. I love God and while I’m not sure why this happened I will trust God . Thank you for your post.

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    • Thank you so much! I will be praying for your son. I am single ventricled as well. I’m sure your son is a strong warrior. If you ever need anything, please don’t ever hesitate to message me. The website for Camp Taylor is http://www.kidsheartcamp.org and it is a wonderful organization/resource. My Instagram is Macer777 if you ever want to message me. I’ll be praying for your son. God bless you❤

      Like

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