“Do you think that I'll grow up to be old?”
“Will people treat me differently because of my scar?”
It's not often that a 9 year old asks you questions you can't answer. But this boy, with his cute grin, Spiderman pajamas and wires running from his arms and chest to the life-sustaining machines at his bedside, was asking me things that I, and even his doctors, couldn't answer for sure.
Even though I couldn't answer his questions directly, I could talk with him openly, and in doing so, take away some of the urgency in his questioning. We sat together on the Cardiac Unit of Boston Children's Hospital and talked about his life and mine. I shared stories of who I was, who I wanted to become and what I like to do. I fielded his questions as best I could, for I had those very same questions when I was his age going through a similar experience as a Boston Children's patient back in the 1990s.
In the last few minutes we were together he looked up and in his Alabama accent, said, “Thanks for talking, I want to be just like you when I grow up.”
It was a small sentence, but it had a big effect on me. Those words proved I had really made a difference. Maybe I hadn't saved the polar ice caps or discovered a new medicine, but I had given this one little boy something to look forward to, and if needed, something to hold on to if things got tough.
As a teenage participant with a Boston Children's patient-to-patient mentoring program, I come to the hospital once or twice a week to connect with younger children who are being treated for heart defects, sharing my own story of how I survived four heart surgeries from 1994 to 1997. I listen to the kids who like to talk, or give hope to those who can’t ask any more questions. I joined the mentoring program at age 15 to give back to the hospital that had saved me, but at the time I couldn’t have guessed how much I had to offer.
I was born with a complex heart disease: single ventricle, mitral atresia, dextrocardia, left juxtaposition of the atrial appendages and bilateral superior vena cava. (In simpler terms, it means my heart had only two working chambers instead of four, and those two were on the wrong side of my body.)
Complicated as the condition may sound, I think of my unique heart as a happy accident—a circumstance that has done more for me than anything or anybody else will.
Growing up with a potentially fatal heart condition has given me confidence in the most unexpected ways—making me brave and allowing me to share that courage with others who need it. I teach kids who have similar heart defects to fall in love with who they are, and I give them hope for who they can become. Sometimes simply just sitting with them is enough because I am still here, still alive, which means they have the same shot. My volunteer work has also helped me grow into my own skin and makes me unafraid to stand out. Before I never thought people would want my advice or look to me as an example, now I know how much of a positive impact I can have.
What I do matters, and that matters to me.
Sure, I can’t play soccer for a whole half, drink coffee every day or take cold medicine when I'm sick, but I can play sports, paint and hang out with my friends and family. I can drive, hike, boat, travel and try new things. I love to learn and to meet new people. I find joy in writing creative pieces and learning about the world’s history woven within art and literature.
It may have been an accident that I was born with a heart condition, but I wouldn’t have it any other way. It has made me appreciate all of life’s little moments and taught me to be grateful for the mere fact that I'm here to enjoy it and help others to do the same.