10 things I Learned When My Son Was Born With A Heart Defect

I learned one-hundred million things when my son came into this world with a congenital heart disease, but some things have completely stuck with me and I'm sure they will until my life is over.

1. A babies heart is the size of a walnut, my sons is half of that. I was told this fact the day my newborn went in for his first open heart surgery. This made the next 8 hours much harder to get through. Surgery on your child is always scary, but knowing they were reconstructing something so very tiny is a whole new level of stress.

2. Being air lifted costs around forty - thousand dollars. When this journey began, bills didn't even cross my mind. When I finally came home for a short amount of time and checked the mailbox, my mind was completely blown. Having a child who is severely ill just isn't enough is it. Kind of makes you re-think your stance on health care, doesn't it?

3. Congenital heart disease is the number one killer of infants in the United States. We're number one, we're number one. I've never hated a number so much in my entire life.

4. Research for congenital heart disease is extremely under funded. How can something so common be something so looked over? Why is it that expensive items are more necessary in peoples budget these days,  than helping small children get to have a life?

5. MY baby is not exempt from strokes, open heart surgery, and other medical emergencies or chronic illness. I used to just pass children who looked as if they had medical issues with a heavy heart, and I used to type "sending prayers" on sad pictures of a child covered in wires on Facebook. I might add that now, that it is my child... I wish more people would help the cause rather than type something and then scroll on through their news feed.

6. Congenital heart disease can happen to anyones child. When considering #5, knowing that it could be your child, should be enough to want to help research. I thought things like this only happened to other peoples children, but it doesn't. It happened to me, it happened to my son, and so many other families are affected by it.

7. Congenital heart disease can cause many other problems, my son is fed with a tube in his belly, and my son has brain damage from a stroke.

8. Having a child with special needs only makes my world brighter, theres never a need to apologize. A lot of people apologize to me when I talk about my son. A lot of my conversation about him involve something pertaining to his health "Charlie sucked on his bottle for a whole 20 seconds", so I can see how somebody wouldn't know what to say. My son has a heart defect and that's apart of him, he's not a burden or a sad story!

9. There is a whole other world of heartbreak behind the walls of a children's hospital. It is easy to get consumed in our daily lives, but we are always, always apart of a bigger picture. I think everyone could benefit from spending time with people who are struggling. It will put your life into perspective and help you to be humble.

10. Life is far more precious than any of us can really grasp. Life comes a goes, whether the life is short or long, whether it was a happy life or a painful life. Death doesn't discriminate and nobody is exempt, so I have learned not to dwell in the inevitable. I have learned to live.