Here is my story for CHD awareness month

Someone one asked me what it’s like having a heart baby. That’s not an easy question to answer. There is a lot that comes with having a child with CHD. First it’s a lot of work. More than just one person can handle alone. It’s a full time job. Fortunately I have an amazing wife who probably spends half of her life on the phone with either a doctor’s office or an insurance company. I also have a 13 year old daughter that is all in when it comes to helping out with her little sister. Which is good because it’s a 24/7 kind of gig when it comes to Willow.

Unfortunately when it comes to CHD, that’s usually not the only issue. And that’s the case with Willow as well. That being said; no matter how many things she has to overcome, she has a big family that is there for her.

When I first found out she had a hole in her heart, I was scared. Then we found out that she was going to need open heart surgery to fix it. Then we found out that she had another hole in her heart.

I remember going home and into the bathroom and just crying. I was so sad. Not for sad me…sad for Willow. Sad for Arialle. Sad for Connor and Tyler. How do you explain something like that to a child? But then you collect yourself and you just do it. No one ever wants their kid to have surgery as a child, but open heart surgery at 4 months old? How does that work? Will she survive? Where does that happen? What will we do with her brothers and sister? What happens after?

But then you remember you are the rock. The strong one. The one that has to show the kids that it’s going to be ok, even if it’s not.

But then it happens and she makes it through. Yes, she has some other issues, but she is amazing. Yes, it’s a lot of work, but she’s worth it. Yes, there are still a million doctor appointments, but you just make it happen.

That’s the thing with Willow and all heart babies. They don’t care. They just want to be loved and held and played with like every other baby out there. She takes it in stride, and we take that cue from her. If I’m tired of all of the appointments, don’t you think she is? I’m not the one getting poked and prodded and hooked up to every type of machine imaginable. Willow is. And she does it. Not always with a smile…but she does it nonetheless.

She’s so smart. So cute and loving. So strong. If a tiny little baby can do it, why can’t I? And I do.

Now I don’t even think of her as a heart baby, I just think of her as my baby. She is just like my three other kids…with some added equipment and flair.

The scar is fading and her heart is strong. Her eyes are bright and full of life.

I am lucky.

Willow is lucky.

My family is lucky.

There are a lot of people who have it a whole lot worse. There are many parents who would love to be in my situation instead of the one life has dealt them. I am stronger now than I was before Willow came into my life, and it is because I’ve watched her be stronger than I ever thought a person or a baby could be.

So now when someone asks me “what it’s like having a heart baby,” I just smile and say its full of work and love. Then I go home and I hug my baby Willow.



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