The Doors that being Chronically Ill Open

I wrote this for Adult Congenital Heart Association  and their blog and I wanted to share it with you guys! I want you to remember that bad things will happen to you throughout your life - but good times are just around the corner. 
Here is my entry: 

This past Tuesday I went to speak to a local sixth grade elementary class about bullying. I talked about how people would call me lazy for using the elevator instead of the stairs, how people would call me ugly because of my scar, and how kids in middle school locked me in a closet and refused to give me my medication. I wanted them to know that bullying is never OK and that before they made assumptions based off of how people look, they need to take a step back and realize that there is more to someone than what meets the eye.

Once I finished my speech, I opened it up to questions. I got a lot of questions about my health, which was fine by me. I want to help spread awareness about CHD. I get a lot of the same questions every year. “Do you swallow all of your pills at once?” or “Have you ever tried to walk up stairs?” and the crowd favorite, “So have you ever, like, died?!”

But one question took me by surprise, one that I hadn't heard before. It was a boy in the back who had made a comment earlier similar to: “Why would they even pick on you?” I could tell by the way this kid spoke that he probably had some learning difficulties. And every time he raised his hands, the kids would mumble under their breath or roll their eyes. But his question really got me.

"Do you ever wish you hadn't been born the way you are?"

I had to blink away tears at this question. Not because I was offended or anything like that. No, it was because I have a feeling that this boy at times wished he hadn't been born the way he was. He probably has spent nights crying over what kids say and do to him just because he has a learningdisability.

I wanted to give him hope. I wanted him to know that even if you are born with a defect or a learning disability, life can still be fun and full of joy. So I shook my head and I told him, no, I don't wish that, and I truly meant it, too.

While having CHD has brought on bullying and completely terrifying moments in my life, it has brought some great joys, too. If I hadn't been born with CHD, I wouldn't have been adopted by the amazing family I have today. I wouldn't have volunteered at the preschool in elementary school during lunch recess and started to learn American Sign Language from the teacher. I wouldn't have joined the sign language choir I am in now. I might not have gotten into writing, which has been so therapeutic for me. I wouldn't have gotten to go to camp with all my CHD friends and make friendships that will last a lifetime.

Yes, CHD is a difficult, scary, sometimes sad thing to live with it. But it has and can bring joy into someone's life. So next time you start to look at all the doors CHD has closed for you, look at the ones it has opened too.

Hope and Love, 


  1. What a great story. You are truly an inspiration to other chronically ill children and EVERYONE for that matter! Keep up the good work! :)


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My Life As A Chronically
Ill Young Adult
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