”You’ve gotta have heart… Miles and miles and miles of heart… When the odds are saying you’ll never win, that’s when the grin should start.” -Damn Yankees, the musical
As we wrote this blurb a year ago for last September’s walk, Miles’s CHD (congenital heart defect) was such a huge part of our lives. Between his surgery, a total of 17 extra doctor appointments than a healthy pregnancy and baby would have, and emotionally recovering from the trauma of it all during the first few months of his life, it felt like his CHD owned our entire reality. We didn’t know if or when our family would start to feel “normal”.
We are so happy to report that a year later, we’ve found our normal. Miles has a CHD, will undergo open heart surgery before his third birthday, and will be monitored by a cardiologist for the rest of his life. While his CHD is still very much a part of our lives, it’s a small percentage of our existence instead of being one of the only things we know about him. Over the past year, we’ve learned that he loves music, swimming, keeping up with the latest fashion trends (or maybe that’s something his mother forces upon him…), learning new words, going to the zoo, traveling, shopping, reading, playing with his puppies, going out for brunch, and making everyone around him smile.
This September, we will walk to raise money for PCHA-OH (Pediatric Congenital Heart Association of Ohio) – a community that we never asked or wanted to be a part of, but we are so glad we’ve found. Initially (and as we wrote this last year), we knew PCHA-OH as the group who provided us with a lovely bag of things to make us feel more at home during Miles’s inpatient stay in the cardiac ICU. Over the past several months, however, they’ve become so much more to our family. They are the people who understand the dark side our parenting journey. They are the people who encourage us to be advocates for our son. They are the people we can bounce ideas and anxieties off of. They are the group of people we wouldn’t be getting through this journey without.
The Pediatric Congenital Heart Association’s mission is to “Conquer Congenital Heart Disease.” They are accomplishing this through collaboration with patients, parents, providers, and partner organizations to improve quality and outcomes through CHD education, support, research and awareness.
The PCHA-OH chapter is a program of PCHA, aimed at improving the lives of those with congenital heart disease and their families through direct support and education – meeting families where they are. Your donation helps support their CHD kit program which provides important educational resources to families when they need them most. Funds raised from the 2019 Conquering CHD Walk will provide inpatient dinners and holiday parties, social outings, advocacy conferences, and medical research grants to local doctors and researchers.
Thank you for your support!