I wrote this over the weekend and planned to post it tomorrow, but I’ve been really sick and wanted to take a second to make sure this was posted since I will probably forget if I don’t do it now. Please share if you know any HRH families who might have been along for our ride.
Nine years ago
today tomorrow, I did something that changed the world. After seven months of searching in vain for information about my unborn, then newborn, son’s heart and trying to divine what kind of future he might have, if any at all, I did something about it. I started a Yahoo Group (remember those?), and I trolled the Internet and found five women who had stories like mine. Stephanie Rastelli, Monica Rafie, Heather Abner, Sharon Dunn, and Julie Thomas. Two mothers of girls, three mothers of boys, and together we formed the very first forum of Hypoplastic Right Hearts.
The years rolled by, the surgeries piled up, one on top of another, across the globe, and our international membership climbed. from California to New South Wales, we had families everywhere.
Children died. Too many children died. In the earliest years, when we were still small, we turned off posts for a day when a child died. When we moved to our new web site we couldn’t do that anymore. So many children have died, but their memories were preserved, their families are loved. We were joined by rare and precious adults born without right ventricles, and one of them (dearest Joanie) died too.
We fought like Hell, we mourned, we celebrated, we bonded, we grew. We learned more than had ever been known by a group of parents before in the history of the world. That’s pretty amazing when you think about it. We became an official nonprofit organization.
In 2008, we united. . . Hearts United. We had the first ever medical conference for parents of kids without right ventricles with a real life doctor to speak to us (thank you Dr. Breitbart) and a motivational speaker who was also an adult survivor (thank you Nick Zerwas). We couldn’t have done it without the fundraising prowess of Valerie Breder. Then, I handed over the reigns of my five year old third child to the amazing Dorothy Morrison and watched her blossom as the new and inspiring leader to our fold.
We met again in 2010 where the wonderful Weltins hosted Hearts Reunited in Houston. They were so amazing, as was Dr. Charles Fraser and his staff who presented to our parents. The kids bonded more, it was magical. Steve Catoe was there with two other adult survivors to give us hope and inspiration. We lost dear Steve later that year, but we had days to enjoy him in person. He was larger than life. Then, the reigns switched hands to the astonishingly vibrant Kim Havelos, without whose husband Tommy, we would still be bursting at the seams of our old Yahoo group. The Havelos family brought us through our transition to a real website, and keep us running.
Here we are in 2012, planning another Heart Reunited. Watching our babies become big kids, watching the big kids be amazing adults, still and always mourning those we have lost, and reaching out to the new moms and dads who are becoming what we were – but better, because they have us. We had no one, so we embraced each other.
I made that – I made it so that the people behind me on this pain train would not be alone. I gave them a place, and then more than nine hundred people came to my party and it became our party. Tammy Lehmen and Jan Pelrine onboarded nearly all of those members. I wish I could name all 900 and counting, but I cannot. They know who they are. We know what we’ve done. We changed the world together. We’re not done yet!
So, in celebration of the birthday of my first nonprofit that I founded, please consider a birthday gift to the second nonprofit I launched. The Children’s Heart Foundation, CO Chapter is my newer nonprofit baby inspired by my first. The Congenital Heart Walk is on Sat. Aug. 25, nine years to the day that Liam had his second open-heart-surgery, and ten days into the infancy of HypoplasticRightHearts.org, my first agency of change in a world that really needed it. Still changing the world, one step at a time.
If you are or were ever a part of Hypoplastic Right Hearts, please post a comment about what it’s meant to you. I’d love to know! Please share your memories.