So much changes as we grow up – TV shows, the clothes, even sometimes our friends. But one thing is for sure, as the years go by, the quality of life for those impacted by CHD improves. As patients and families, we have more support than ever and more opportunities to connect. Though we may miss many things about our youth, this will always be a change we’re glad to see. This week, an adult patient shares how her connection to a community developed through the course of her life.
Oftentimes when we grow up, we lament the things that have changed since our childhood. We find ourselves looking to the past with rose colored glasses, wishing it stayed the same. But now, after my 40th year on this earth has come to a close, I am overjoyed by the way things are different.
As a kid I knew no one else with a CHD. I thought I was the only one like me. How could I know there were kids and adults all over the world who had been through what I’d been through, who could understand what it was like.
It wasn’t until my college freshman orientation that I met anyone else with CHD, another Jennifer as a matter if fact. I’m not sure how it even came up. It may have been my scar or I may have commented on my nearby hospital. But somehow we started talking about CHD.
I found out that we didn’t just share a first name – which happens pretty often since Jennifer was the most popular girl name in 1982 – but we shared CHD, a home hospital, and had surgery in the same year, performed by the same surgeon.
It was like slipping into the twilight zone or accidentally meeting the you from another dimension. Instantly that person is familiar. It was something I’d never felt before, that connection, that sense of knowing what is unspoken. It was exhilarating and somehow reassuring.
The new Jennifer and I hung out briefly when school started, but soon went our separate ways, never having again talked about CHD.
Maybe we just wanted to find our place away at a new school, maybe at 18 it didn’t seem necessary to “engage” in the CHD world, but the experience opened my eyes. It brought this abstract idea – that there are others – to life. I can only imagine the difference meeting Jennifer would have made to me had it come 10 years sooner. What would it have been like to have a friend to go through it all with? Would the uncertainty of the future seem less scary? Would we be able to commiserate or encourage each other as we faced different milestones? Would I have felt less like I was missing out when I had surgery senior year?
So when I think about how things were when I was a kid, rather than focusing on the things I miss, I think how wonderful it is now that children, teens, adults, and parents can find each other. That kids today get to grow up alongside others who know what it’s like, adult patients can navigate the uncertainty together, and that parents have a knowledgeable support system. We don’t have to go it alone.
And twenty-two years after first meeting someone with CHD, I’ve met other adults like me, volunteered alongside providers and heart moms, and chatted with strangers in similar shoes. These people will change your life. They will make a place for you to fit no matter what. Through them, I’ve learned how lucky I am and how every year things get just a little bit better for the next generation.