The Ones Who Care For Us

After my first blog was posted on the ACHA website, I shared it with my parents. The next time I was speaking with my mother, I could tell something was bothering her. We were about to hang up when she said “I liked your piece but you left something out. You mentioned you’re a husband and a father. But you didn’t mention that you’re a son. My son.”

It was a wake-up call reminding me how important it is to thank and acknowledge the special people in our lives who care for us as adults with congenital heart disease—particularly during times like surgery. Naturally the focus is on us. Are we OK? Do we want or need anything? That’s usually the conversation. But what about those closest to us and the impact on them? Thinking back over the months leading up to my surgery, my parent’s reaction to my need for surgery was an interesting mix.

I knew my mom was extremely concerned. But I could also sense that she was frustrated. After all, we had gone through this 40 years ago and the doctors said we were done with all this. Now here I was a heart patient again. What did we miss or do wrong?

I could sense my mom’s need for answers. Long-term studies of patients like me revealed a need for valve replacement surgery, I explained to her. Nevertheless, she wanted to know why my cardiologist had never said anything. Personally, I was just grateful to have learned about my need for surgery even if it was by accident. At the same time, I realized my mom’s feelings were rooted in her deep sense of caring.

My dad’s approach was different but aligned with our close connection and something I truly value—our ability to talk about things with humor. We joked about how back then, before my first open heart surgery, we had our daily “nose check.” Just like today, it was essential to stay healthy. As such, each night, before bed, I had to demonstrate that my nose was completely free of congestion. I’ll spare further graphics.

And of course my wife has been a superstar, making sure I do all the right things before and after my surgery. In fact, she has even taken up running. It’s not because she’s eager to run. Quite the opposite. She just knows me all too well and knows that left to my own devices, I may overstep (or overrun) my cardiologist’s direction to take it slow and easy. With her running next to me, I have no choice but to follow my doctor’s orders. And hers!

I am really lucky to have a great support system and I hope you do, too. Whether you are just beginning your journey of managing your CHD or further down the line, here are a few things that have worked for me to keep your team humming:

Make them partners in your journey: Since you’re probably going to your tests and appointments on your own or with your partner (as opposed to your parents), share what’s going on with them and your extended family. Particularly as the research continues to evolve, keep them informed of advances and new technologies. You probably won’t have all the answers, so invite your family to learn along with you.

Be open and honest: Share your feelings with those closest to you. If you’re scared, talk about it. If you’re hesitant to move forward with surgery, explore why. Almost every week leading up to my surgery, my dad would ask me if I was worried or scared. I would tell him no and that was true. But when I was about two weeks out, that changed. I was more worried. I was concerned. I told him and it was helpful to be able to share that.

And the winner is….

Thank and appreciate them: I work as a professional fundraiser and my #1 rule is that you can never “over-thank” people. Same thing here. You can never thank your family and friends enough for their support and love. So do it. It’s that simple.