The Mighty Logo

When My Daughter Asks, 'Why You?' Regarding My Heart Defect

The most helpful emails in health
Browse our free newsletters

I snuggle into the twin-sized bed next to my daughter. She is getting too old for this, but our routine continues despite her growth spurts. Nighttime, in the dark, is when she asks the big questions. Sometimes of those questions center around me and my heart defect. Often, she wants to know, “Why did this happen to you?”

Statistically speaking, I shouldn’t be here — yet here I am. I was born 37 years ago with a heart defect, pulmonary stenosis to be exact. It’s where the valve that sends blood from the right ventricle to the pulmonary artery doesn’t work properly. I’ve never seen myself without my surgery scar. I’ve always gotten sick more easily than others and had a harder time recovering from simple colds. I have to take antibiotics for the dentist and I have to take an aspirin every day for the rest of my life. I’m comfortable in the hospital. My body insecurities in my day to day life disappear when it comes to medical settings. I’ve had multiple surgeries and complications both big and small.

Someday, in the not too distant future, my pig valve will reach a point where it’s not working anymore and we’ll have to figure out the next step. Will it be something we can fix in the cath lab with maybe only a night or two in the hospital? Or will it be another full open-heart surgery with weeks of recovery and risk? We won’t know until we get to that stage. I don’t worry about it much. I’ve never spent much time worrying about things I have no control over. That is my reality. This has always been my reality and it will always be my reality. I do worry that my kids think about it a lot. I worry about who’s going to get them up and ready for school and make sure they eat their vegetables while I’m recovering.

Previous to the internet, I’d never met anyone else like me. Now, I’m in various heart groups through Facebook, and there can be a lot of “why me” questions on any given day. I’ve noticed this happens most often with people whose defects were not detected at birth. People who were “normal” and then suddenly aren’t. I’m not sure I ever really understood how different I am until I started meeting other people online with heart defects. Sometimes it makes me feel like maybe I should be angry or sad or simply unsatisfied with the hand I’ve been dealt. Most of the time it makes me feel fortunate to have gotten off so easy with “only” a heart defect. Sometimes I get bogged down with frustration because I can’t do some of the things other people do. I’ll never run a marathon. I can’t function on four hours of sleep. I’ve always been jealous of women who seem to have boundless energy. Who can get down on the floor to play or toss their kids up in the air. I don’t play with my children when I take them to the park. I sit on a bench with a book, grateful I can take them to the park at all. I’m currently in the best health of my life but it takes serious effort to maintain. I can’t forget that. I can’t take it for granted. My body will fail me if I fail it.

My daughter asks “Why you?” I tell her I don’t know. She is unsatisfied. She asks if my mother did something wrong when I was in her tummy. I tell her absolutely not. She asks if I’m mad at G-d. I tell her no. She asks why I’m not mad at G-d. I tell her, maybe this is what makes me special. Maybe this is what makes me strong. Maybe my defect helped doctors learn more about the heart and will be able to make other kids better. Maybe there is no reason at all.

We want to hear your story. Become a Mighty contributor here.

Thinkstock image by: Choreograph

Originally published: May 1, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home