My Son Was Born with a Heart Defect, Here's What You Should Know

Charlie, January 2015, after his first open heart surgery. He had a stroke shortly after.

Everybody knows it's a possibility that any child can be born with something very wrong with them. Lets be honest though, none of us actually think it will be our child.

Not everyone will realize all the things that contribute to the hurt of having a chronically ill child. After Charlie was born, I had to mourn the loss of the dreams I had once had for him. All at once, he was here, he was sick, he was whisked away while I was left in the hospital, to think the worst, to try and make sense, go through the guilt wondering what I had done wrong, and wondering if id see him again alive. You go through a stage of mourning the loss of "normal".I know that sounds like it should be the least of our worries, but its our whole entire life that has been forever changed. Please remember that our peace has been broken.

What I would tell the ones close to me

I have family, and friends that have had children very close to when I had Charlie, and its hard for me to talk to them about some things. They have a normal, beautiful healthy baby. Their worries consist of colds and coughs (which isn't wrong), and quite frankly its very hard for me to put on a face and sympathize. I realize that that's not fair to them, but I can't help it. I've seen my sons chest open, I've seen him slipping away. I have people in my life who just can't understand that caring for a chronically ill child is a 24/7 job. If I'm not the best friend, I am sorry, but I am trying my best to even consider myself most days. I'm not who I was, I never will be, being Charlies mommy has changed everything in many ways, he has made my life better, opened many doors in my heart and mind, but congenital heart disease has stolen a lot of happiness from us. I just ask that you please be mindful of all these things.

Isolation

This journey can be a lot of things, including isolating. Isolated in the rate your child grows, and his milestones. We're isolated in hospital rooms, waiting rooms and on our couches at night debating on calling our childs doctor. We can't make everybody fully understand the depth of the situation. Misconceptions hurt, the comparisons hurt, and the assumptions hurt. Family goes through it all with youl, and no they did not expect it either. It can be rough because they don't want to get to close emotionally. They are scared to handle him because he is sick. They are afraid to pry because the situation is so touchy, and you begin to feel like nobody wants to be around.

We didn't expect this

A girl spends her entire childhood dreaming of the future, from getting married to her prince charming, to having their own baby. When your a girl, and your playing with your baby doll, you don't picture a baby with a scar down the middle, you don't pretend your raising them in a hospital, or feeding them through a tube in their stomach. Bottom line, its not something somebody expects to happen to them.

Personally, I went from a state of shock, straight to acceptance. I did this because the reality that he could go at any time sank in fairly quickly, and I didn't want to waste time in denial. I chose to just love him, for everything he is. I chose to love his little hypoplastic left heart.

This is Charlie now, Mid 2016 - He still has a g-tube, he has small pulmonary arteries and we are looking for his next surgery to be when he is 40lbs.

SUPER CHARLIE!