Feb. 7 marks the first day of congenital heart defect (CHD) awareness week and I wanted to share with y’all about my CHD and how I learned I had a heart defect.

Some background. I was born with congenitally corrected transposition of the great arteries (also known as ventricular inversion), VSD and a total heart block. Luckily, I was diagnosed with a CHD before birth, so the doctors knew something was going on and knew how to take care of it when I was born.

At 7 weeks old, I had a pacemaker put in to keep my heart beating on rhythm. My whole life, I took morning medicine and I went to Houston to see a cardiologist around Christmas time. Didn’t everyone? I honestly thought everyone saw a cardiologist up until around…fourth or fifth grade? I don’t know if that’s embarrassing or not, but it’s all I knew, so I assumed it was normal. Wrong. It wasn’t until I had to have my pacemaker battery replaced in sixth grade, that I truly realized I was different. Not in a bad way, just different.

I finally started to grasp the concept of my congenital heart defect and started to ask more questions when I was middle school aged. During middle school, I started having more heart related surgeries, nightmares and dealt with some depression when I knew I had a surgery coming up.

I had a constant fear of collapsing at school. I have no idea where this fear came from because I’d never fainted or collapsed before, but at the time, I’d had a band put on my pulmonary artery to prepare my heart for a surgery called the double switch. This band prevented me from running and made me extremely exhausted all the time. At the time, no one really knew how sick my heart was, including my doctors.

Growing up, I was no different than other kids. I played soccer, softball, rode horses, danced, did girl scouts, went to summer camp and did whatever else little girls do. My parents were amazing and never let my heart problems hold me back. If I was told no, they found a way around it or way to make it even better. My parents were always open and honest with me about my heart problem, and I am so thankful I had them on my side as advocates.

My advice to parents with a heart warrior?

Be your child’s best advocate. Fight for them to be normal and keep them informed. Listen to your instincts. If something seems off, call their cardiologist and never be afraid to ask for a second opinion. Lastly, listen to your kid. When they say their arm hurts on a ski slope in Canada, don’t ignore it until you return to the states…(right, Dad?) But really, they know their body best and hopefully will tell you if something hurts more or if they’re more tired lately.

My advice to kids with CHD?

Live. Life. Seriously, do what you want and if you’re not allowed, find a way so you are allowed. If you can, raise CHD awareness. People are more likely to listen to a cute kid than an adult. Lastly, know you’re not alone. This one was hard for me. But you’ll find others with your CHD or something similar. Don’t be afraid to ask for help, especially if you’re sad. This is something I wish I’d done and didn’t do.

Want to learn more about CHD? Click here. Have a questions for me? Leave a comment below.