The Hardest Part of Living with a CHD

Living with a CHD is hard sometimes. We deal with all kinds of issues.

Often we are tired, sore and stressed about surgeries or procedures, in pain from those same surgeries or procedures, and recovering while knowing that everything we went through is just a patch and that we will have to have another procedure somewhere down the line. It's tough and at times feels impossible.

For me, the worst part of it all is not all the medical stuff. I can deal with that; it's hard sometimes, but I'm used to it. I put my head down and bull my way through the bad days. I can push through pain and fatigue better than most people I know. I should be able to—I've had enough practice at it. For me that's just part of my normal, everyday life.

When I must have a procedure, I just schedule it in and have it done.

It doesn't bother me that I have to go through these things, and I don't stress over them. Maybe it's my sense of humor, but I have fun when I have to spend time in a hospital.

For me, the worst part of it all is right before I'm wheeled out of my room: It's dealing with my mom.

My mom is awesome and has always been there for me, regardless of what is going on in my life. She's also a worrier. I think all mothers are. I turned 40 this year and she threw a surprise party for me. At the party she gave a little speech and she mentioned that they thought I wasn't going to make it to my 40th birthday. I thought she was going to burst into tears. Even that isn't bad compared to the look of fear in her eyes every time they roll me out of my room, on my way to another procedure or surgery.

I don't want her to worry about me. I don't want her to have to live with the fear that I might not come back from wherever it is they are taking me. I also know that there is nothing I can say or do that will stop the worry and fear. Moments like that break my heart, and the fact that I can't do anything to prevent them—that is the most difficult moment of dealing with my CHD.