When Liam was first born, he was the only CHD baby in the NICU at Presbyterian St. Lukes. All the other babies in that dark room were extremely premature. There weren't many, and they were so small that when we sat down to hold Liam, the other children could not be seen behind the half walls of their incubators from across the room. I can't remember seeing another parent there, even though one or both of us or one of Liam's grandparents was in that unit 18 hours a day.
We never stopped to gawk at the other babies - that's totally against etiquette. The only glimpses we saw were as we entered the room and the itsy bitsy babies passed through our peripheral vision. It wasn't until Liam was airlifted to Los Angeles at a week's age that we met our first heart family in person. Jesse and Valerie's baby Desiree was born on my birthday, five days before Liam. Desiree wasn't diagnosed with HLHS until she was two days old. She had her Norwood the week before we arrived in LA.
Jesse was a born again Christian "sleeved" in tattoos. Valerie was his second wife, and Desiree was their third child together and Valerie's first daughter. They left their older children in East LA to drive 90 minutes through hellacious traffic to sit with their newborn daughter.
Our second real-life heart family friends were the Bohn's, whose son Colin was born the day of Liam's first open heart surgery. Colin's parents Jen and Kevin are still our friends. We're conspiring on getting our two boys to heart camp together in the coming years. In LA we also met Lynn, mom to Wyatt, who is my Facebook friend eight years later.
When it comes to Heart Family, I remember two things about the summer of 2003, 1). Starting Hypoplastic Right Hearts in response to the dearth of information about Liam's condition and 2). The sound of Valerie's voice on my answering machine when she called me after I mailed her a letter to tell me that Desiree hadn't made it to her Glenn.
That sweet little baby with the tiny red bow in her hair was gone. Those brave parents who were no different in their love for their child than Jim and I who prayed over Liam, lost their own battle. I've never had a birthday since when I didn't think of the day Jesse and Valerie were beaming about bringing their daughter home or how short their time together was.
Desiree was the first personal loss I'd felt in my extended heart family. I was so green then, but I still cry, eight years later, when our brothers and sisters in this fight have to concede the battle ground and bury their children. When my friend Steve Catoe died last November, I was numb for days. Sometimes, I can't believe that he's gone, even now. I feel so blessed to have spent time with him last July in person.
I have never "gotten over" Desiree and I'll never "get over" Steve's death either. I never stop feeling for the families whose paths diverge from my own. By the grace of God alone am I still on the battle field for Liam's life, but I am not alone on that battlefield. Every year 40,000 new babies are born with CHD, and every year 8,000 of them don't make it to their first birthday. The parents left fighting are just like me - full of the same fears, same fights, same determination to learn what we can and be the best advocates for our kids. There are 1.8 million CHD survivors in the US and that number grows each year. We are legion. We are not alone, yet we feel so alone far too often.
Facebook is amazing in connecting so many of us together. It's taken what I started with Hypoplastic Right Hearts in 2003 and blown it sky high. What are we going to do though, now that we're connecting? How is this family reunion of epic proportion going to advance beyond the necessary emotional support to the advocacy and action necessary to make the research and medical services work for our kids? What's next, heart family? Where are we going, and where do we want to go?
I wrote Half Heart, Whole Life, not as catharsis. Lord knows I have no problem telling anyone and every one about our journey. Through the years, our Care Page captured most of what I needed to say. I wrote the book simply because it was unwritten. I wrote Half Heart, Whole Life because the world is far too comfortable imagining that babies don't die or that heart disease is for old people. I wrote it because every time I mention that Liam's had 12 heart surgeries, the first thing non-heart parents say is, "I'm so sorry." I'm not sorry - I'm glad he's survived those surgeries. I'm sorry for Liam that he needed them, but I'm never sorry to still be in the fight, and that's something people beyond our heart family don't understand. I'm trying to change that.
I wrote Half Heart, Whole Life because as much as our heart family is growing and growing together, the rest of the world needs to know how many of us there are and how hard we fight, and we need to work smarter and harder TOGETHER. It's a rallying cry to share and bond and move forward as a community. I write about the Heartland in the book, and that's the place where we were once marginalized as parents of children with this chronic and life-threatening condition. I want it to be a place we celebrate for the strength it holds, a strength it draws from each and every segment of our larger heart family.
Alone we are terrified, together we are unstoppable. My book is simply more glue to bind us. Heart Family - post your links to your blogs, your stories, your carepages, your support groups here. Speak up and be counted. Just post your child's name or your name if you're a warrior, and BE COUNTED. We count. Speak up and make the world listen. We are family!