You’re probably sitting there reading this and wondering why this post has a reference to the great philosopher Vanilla Ice. Now that I’ve got you hooked in, and before I explain myself, first allow me to set the stage a little bit:
Have you ever had a time – maybe late at night – where you’re giving a dosage of a med to your Heart Kid, or just doing the “are you still breathing” check, and you just get overwhelmed with a feeling of helplessness when it comes to your child’s heart defect? Every once in awhile it happens to me: I sit there and I watch Nolan sleep and it all looks and feels so peaceful. But then there’s all those surgeries he’s been through, and the pain, and the fear, and the monthly blood draws, and all the appointments…and I just get so upset….because I can’t be Vanilla Ice.
But why Vanilla Ice? Unless this is the first time you’ve been on the interweb – or in the world, for that matter – you should know about Vanilla Ice’s 1990 smash hit “Ice Ice Baby,” which features the following line:
All jokes aside, yeah it does get really frustrating that there are days where I look at my son and I feel helpless because there’s nothing that I can do to fix it. I’m not a surgeon, not a doctor, not a nurse. If I could snap my fingers to make the CHD go away, I would…heck, if I could trade places, I would. But this is not something that I – myself – can fix. And it’s a struggle, you guys, because as human beings we are fixers and problem-solvers. We hold problem-solvers in high regard! But this, this tends to bog us down. Do you ever feel that way?
So what do we do, then? Wallow? Nah. For me, I try to get a little bit reflective and look back on how far this kid has come.
Example: the other day I was in the kitchen making dinner and Nolan was looking for a particular book. He asked me where it was and I told him I thought I saw it on his bed, and he replied with, “Well I have to go get it!” and proceeded to run up the stairs. Ok so that doesn’t seem like much, but in that moment I’m reminded about the early days of weekly physical therapy, where he had to learn to sit, crawl, and eventually walk. And a big thing was getting him up and down the stairs safely. And he was so small that it seemed like such a struggle for him. Now he’s running up the stairs. Or climbing on trees at the beach. Definitely a moment to be thankful for.
Or there’s also the time where we were at a farm near our house and Nolan asked me to push him on the horse swing. The same kid who was cut open 3 times in an effort to give him a life to live, was now smiling, laughing, and screaming with joy. The same kid, who as a baby was on a vent and couldn’t even cry, was now shouting, “Push me higher, dad!”
Or those times where he asks me to make him “fly like an owl.” I can’t help for those moments of joy, love, and laughter.
So yeah…as a Heart Dad, I can’t fix his CHD. But what I can fix is my perspective. If I focus on what Nolan has overcome, and especially those wonderful, everyday moments, I can find myself not so down-in-the-dumps. And yeah, I know it’s not easy to do all the time; sometimes you need to link up with other heart parents to help you through…stop, collaborate, and listen, if you will. See? In a way, you can still be Vanilla Ice.