Ever wonder what it's like to be a "Heart Mom" or "Heart Dad"? I'll tell you...
1. There are more of us than you think.
Congenital Heart Defects are the most common type of birth defect. Approximately 1 in 100 children are born with some form of CHD. That's a lot!
That means that most likely someone you know is affected in some way by a CHD. They could be a parent, grandparent, sibling, friend or even have a heart defect themselves.
2. We get angry sometimes.
Although I'm not proud of it, I feel anger sometimes when I think about the complex CHDs that affect my daughter and her future. It feels unfair.
As time has gone on, these feelings have been much less frequent, but they still flare up at times.
3. We have an unspoken, unbreakable bond with other Heart parents.
There are so many unique & complicated feelings that go along with having a child with a heart defect. There is no one who can "get you" like another Heart parent. They understand how you feel without you having to explain the intricacies of your emotions. They know the fears that you are too scared to verbalize. They just get it. When I can't express my feelings with words, I am grateful to know I have people who understand anyway.
4. Our journey is never over.
CHDs are lifelong. There is no "cure." Even if my daughter doesn't need any more surgeries, there will always be cardiologist appointments that will inevitably dredge up some old memories and new fears. There is always a running clock in my head knowing there is more to come. The waiting and the fear of the unknown can be the hardest part.
5. Our children are our heroes.
Our children are amazing. My daughter is amazing- she has gone through more in her short 3 years of life than many adults will do, and yet she is still so full of joy, radiates such positivity and light. Our children are resilient, and they are fighters. If anyone is an inspiration, it is our kids. It is my Emery.
6. We wouldn't change a thing.
Of course we would do anything to take away any pain or struggles our children experience, but we would never change who they are.
My experience as a Heart Mom has changed me and made me a better person. It has taught me so much about courage and strength and love. Although this wasn't the journey I expected, I wouldn't change a thing because it has given me Emery.
This is why I walk.
This is why I choose to spread awareness- because little hearts matter: Emery's heart matters.
Congenital Heart Disease Matters.
