Our CHD Heart Warrior Inspires Us to See the World Differently
Written by Lauren, Everly’s mom
Everly, who has a congenital heart defect (CHD), had three open-heart surgeries, two cardiac catheterizations, and one infection washout surgery before her first birthday. She will have many more surgeries in her lifetime, but right now, she's a happy, active two-year-old. She is growing and thriving!
Everly has a complicated diagnosis. She has an interrupted aortic arch, aortic stenosis, sub-aortic stenosis, hypoplastic bicuspid aortic valve, and a large posterior maligned VSD (ventricular septal defect).
Have you ever heard the term "kintsurkuroi"? It's a Japanese word meaning to repair with gold. The Japanese mend broken pottery by using a gold liquid to put it back together. They believe the pottery is stronger and more beautiful because of its flaws. I like to think this is similar to the work Dr. Elzein and Dr. Ilbawi did on Everly's heart at Advocate Children's Hospital. She was born with a "flawed" heart; however, they have used "gold" to help make her stronger.
Despite the challenges, Everly lives her best life. She inspires us to see the world through a different lens. We focus on "getting to" versus "having to." We find joy in everyday moments. We are lucky. 25 percent of babies like Everly don't see their first birthday. 30 percent don't see their 18th birthday. Even less see their 30th birthday. We've seen far too many families say goodbye to their children as they get their angel's wings.
Everly is a fighter. She's feisty and spunky but has her sweet moments, too. Her big brother, Jack, calls her a sour patch kid -sweet mostly, but once in a while sour! Her dad calls her a busy bee -she flutters about but watch out for that stinger! Everly is FULL of personality - she has more personality than Matt, Jack, and I combined!
We love Starlight for thinking of everything a hospitalized kid and their family need to help smile during long hospital stays. They deliver happiness not just to families like ours but to families everywhere who struggle with pediatric cancer or physical disabilities or serious injuries.
It may seem like a small thing but a comfortable new Starlight Gown or an hour playing video games on a Starlight Gaming Station or having the chance to escape the hospital and explore the world in virtual reality? It's priceless.