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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Letters (Part One)

I’m a junior now. This school year has definitely been an interesting one. My best friend(who shares your name)graduated, so it has sucked not having her at school, but we hang out like every weekend, so it’s not too bad. I had a catherization in September. After that, I was sick multiple times. Only recently have I been better.

I was the assistant director during my school’s fall production. I was going to be assistant director for the spring musical,  but I couldn’t do it for health reasons-you’d understand. 

My friend Ally and I aren’t friends anymore. If you were still here, you’d probably know that Ally and I were really close friends. Problems arose last year between Ally, me, and my friend who shares your name. After that, our friendship with Ally didn’t stand much of a chance. It’s okay though. Usually, I’m fine with it. But I’d be lying if I said I didn’t miss her sometimes.

I turned sixteen last year. I would’ve invited you to my sweet sixteen if you’d still been around. Speaking of birthdays, your mom’s is next week. I got her a card, so I hope I got the date right too. My birthday is also next week. It’s the 23rd. I’m gonna be seventeen. It’s so hard to believe I haven’t seen you since I was twelve, even though you went to Heaven when I was fourteen. I wish I could’ve seen you between the ages of twelve and fourteen. I’m pretty excited for my birthday. I’m planning on going out to dinner with my family and my best friend who shares your name. 

It’s been almost three years. If I’m correct, it’s been 2 and 1/2 years. I bet you’re having a lot of fun in Heaven with other former heart warriors and with Jesus. Your birthday is in about three months. You would’ve been twenty five. I wear a heart locket with your picture in it every day to school. That necklace is really special to me. Some days, I really wish I could hug you. I’d love to talk to you again. When I entered high school, it would’ve been nice to have your advice. At any point in high school, your advice would’ve been appreciated. I’m almost done. Half way down with junior year. Then, senior year. Then, college. I’d like to go to Tennessee State. I’d love to live in Nashville someday.

I like to think that you’d be proud of me. I like to think about advice you might give me if you were here. Whenever I talk to people about you for the first time, I like to mention that I thought of you as a big sister. I still do. I’ve been thinking about you a lot lately. You had a really huge impact on my life, and I’m not sure if you know that. I could really use one of your hugs today. It’s been years since I last got to hug you. But I’ll hug you again someday. You told me “it’s not goodbye. It’s just sad you later.” And I’ve never forgotten that.

I met your parents and your brother a few months. They’re really nice people, and I hope to see them again soon. They’ve said that they see a lot of you in me. That means a lot to me. I’ve hoped to be something like you when I grow up. 

I have the text messages you sent me saved along with a few emails. I don’t know if my constant texting you as a kid annoyed you or not. But you never made me feel like I was. Thank you for that. I’m sorry if I ever did annoy you. I just loved talking to you. I trusted you very quickly when we met. I don’t think I’ve ever really said thank you for all that you did for me. Thank you. 

I still have the eye shadow palette you gave me when I was ten. I know it’s old and I shouldn’t wear it. I don’t. I just keep it because you gave it to me. It’s the shape of a flower with purple and pink colors. I also have a sign you made with my name on it. I also have a ton of memories that I hope I don’t forget.

I’m only sixteen (almost seventeen), so I won’t be having kids any time soon, but when I do, my first daughter will have your first name. She’ll grow up knowing how special her name is. 

I’m in an AP English class. I love my teacher, but it’s a difficult class. We did an in class essay today, and I’m really proud of it. I got to be really sarcastic in it. Hopefully, my teacher appreciates my humor. 

It’s been a while since we last talked. I love writing. I find it to be really fun. My favorite author is Nicholas Sparks. My favorite singers are Megan and Liz. I’ve met them twice. I think I want to be a therapist for my career. I like to think I’d be good at it. As it turns out, we both like Taylor Swift. Currently, my favorite songs by her are Begin Again, Long Live, and Ours. I don’t really know why I’m telling you this. Maybe I just like to pretend you might be reading this. There’s a lot I’d like to tell you that I won’t disclose here though.

Just like Carrie Underwood sings,” I will see you again. This is not where it ends.” I mean, she also sings ohs, but you get the point. 

Xoxo Faith❤

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