4 Ways My Son's Medical Condition Has Made Me a Better Man

My life changed forever the day I found out Nolan, one of my twin sons, would be born with half a heart. In his first two years of life — after two open-heart surgeries, a feeding tube and many hospital stays — I’ve realized that “dad life” is more than sports and horseplay… it can be so much better. So how did having a son with hypoplastic left heart syndrome make me a better man?

1. I learned what compassion was really about.

I used to think I was a pretty compassionate dude before Nolan was born, but seeing him with his chest open and tubes everywhere really changed how I viewed the world. Before Nolan, I was completely unaware of congenital heart defects (CHDs) and how devastating they can be on a family. I paid no attention to things like the annual Heart Walk or giving to the Children’s Miracle Network. I just thought that by doing a few kind things now and then, I would have this nice-guy thing on lock. Boy was I wrong! 

CHDs can break you down, and as you build yourself up again, you realize there are other people struggling, and your heart truly goes out to them. You want to help, you want to lend a hand, you want to share your experiences so they don’t feel alone. That’s why I started my blog: to reach out to fellow Heart Dads and let them know, yes, this is hard and I’m with you… and you’re never “too manly” to hurt.

2. I began to take better care of myself. 

Come on, guys, you know the drill: you’re fine, and you don’t need to see a doctor unless a limb falls off… and even then, you have duct tape. I was notorious for not going to the doctor for anything; I’d just suck it up and get through it. Now that I’m caring for a child with a serious medical condition, I think it would be pretty lousy of me to exit my Heart Warrior’s life early because my own ticker gives out. This means losing some weight, paying attention to what I eat and even going to the doctor for my first physical in who-knows-how-long. I know what you’re thinking: green smoothies aren’t “manly.” You know what’s manly? Living. Try it.

One thing that’s just as important as taking care of your body is taking care of your mind. Please realize that parents in our position can and do suffer from symptoms of PTSD. When those feelings come, talk them out. Don’t pack them in; it isn’t healthy. I also take some time almost daily to have a centering moment. For me that’s a cup of coffee and zoning out on the couch once all the kids go to bed. No worries, no busy thoughts… just my coffee and some deep breaths. From there, I can tackle the world. Again, try it.

3. I know I can’t do it alone. 

I always get asked the same question: how do you do it? I picture heart parents like giant redwood trees: tall and strong. What I’ve learned recently is that redwoods actually have shallow root systems. Instead of reaching down, the roots reach out and wrap around the roots of other redwoods, and that’s how they survive and withstand decades of weather and wind. Mind. Blown.  

My wife and I make a really great team. I work hard and so does she. There are lots of late nights and lack of sleep involved in the lives we live. There are lots of appointments and therapies, too, but without each other, we’ll never make it and neither will Nolan. But our root system has to extend outward, too: family, friends and other heart families. They keep us supported and we support them. I know it’s the tough-guy thing to put the world on your shoulders, but you just can’t go it alone. Reach out for the roots of others.

4. I know I’m training for this marathon as I run it.

Nolan is 2 years old and he’s doing great… but this definitely isn’t a sprint; it’s a long run. Most of the time, though, I have no clue what I’m even doing. I’m far from the perfect dad, but I’m trying my best. I’m no clinician, but I’m trying to learn. I’m not well-known, but I still write regularly on my blog and even went to Washington DC to lobby for more CHD research. There’s something new daily, if I sit down and really think about it. And there’s more to come. I don’t know how I’m going to explain to Nolan that his next surgery will be painful. I do wish he could run as fast as his twin brother, but he’ll get there. I do want a long and strong life for him… and we’ll do that together.

So as we celebrate Father’s Day this month, I want the dads out there who are going through a similar situation to know that while it isn’t the “dad life” you planned, it’s still a dad life full of wonders and joy, and it’s a journey that will make you a better man every step of the way.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to community@themighty.com and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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