February is American Heart Month. Everly, a patient at Advocate Children’s Heart Institute, was born with multiple heart conditions and has had eight surgeries, including three open-heart surgeries. Her mom, Lauren, shares her story below.
Everly asks about her scars.
She has a lot of them – her chest incision, five chest tube drain scars and a large, raised scar covering most of her right foot from an IV extravasation. When she’s sun-kissed, you can see lots of little scars all over her neck, shoulders and arms from IV pokes.
Everly knows she has them because she “has a special heart that doctors helped fix.” But she’s 4 years old, and she asks a lot of questions, like why she was born with a special heart and her friends weren’t.
Or why Santa hasn’t fixed her heart completely if her brother has asked him to fix it every year since she was born.
Normally, Everly is pretty okay with her scars, her special heart and doctor appointments, but she’s been starting to ask more often about why she has to do all of this and other kids don’t. Especially when she doesn’t want to do things like blood draws, nose/throat swabs or get IV lines placed. She knows the reason is to help her, but it’s still a lot for a 4-year-old.
Since she was born, we’ve been very careful and thoughtful about how we talk about Everly’s scars. It’s important to us to frame them in a positive light. We tell her how special she is. That they’re a badge of courage, like a medal she wears around her neck showing how brave she is.
While she’s okay with her scars now, we share the positive thoughts so much now while she’s young so they will hopefully stick with her.
One day, out of the blue, Everly’s dad, Matt, says to me, “I want to get a tattoo.” In 14 years, I’ve never heard him mention wanting a tattoo. But he wanted to get Everly’s scar down the center of his chest because he didn’t want her to feel alone.
Thanks to a generous Christmas gift from some family members, Matt received a gift certificate for the tattoo. When he got it done, he came home and surprised Everly with his new matching scar tattoo. She was thrilled to have someone just like her.
Sometimes strength comes in knowing you aren’t alone.
Advocate Children’s Heart Institute is ranked 13th in the nation for best pediatric cardiology and cardiovascular surgery programs. As medicine continues to evolve, so does the need to evolve our program through meaningful support of capital endeavors, patient care programs, continuing education and social services available to our patients and families. Join our efforts and support our programs and patients like Everly.