As a heart mom, the most common statement that I hear from other people who don’t have medically complex children is “I don’t know how you do it.” Usually, I just smile and say that we do what we have to do. What I want to say sometimes is that I cry more than anyone knows. Occasionally I want to reply that it’s a wonderful, amazing, and terrifying journey but some days I feel like my heart is being slowly ripped out. Having a child with a terminal diagnosis is certainly not what any parent imagines when they first see those two solid lines appear. We had been trying for years to give our daughter a sibling. We had spent thousands of dollars in fertility treatments and had multiple miscarriages on our journey to do so. As a result, even when I saw those two solid lines, I was pretty freaking terrified. I was excited, and hopeful as well, but those were combined with a huge dollop of pure fear. I have come to realize that raising my son Ezra is pretty much that same combination of emotions on a day-to-day basis. Many days are full of excitement and hope, but there is always a huge dollop of pure fear hanging out in the corners of my mind that reminds me of how I felt when I first saw that positive test after so much heartbreak and so many losses.
We found out that Ezra had hypoplastic left heart at our 18-week anatomy scan. The maternal fetal medicine doctor encouraged us to terminate, but that was never an option for us. This was another moment that was a bittersweet mix of hope, excitement, and fear. His first surgery, the Norwood, was at 8 days old and as I walked with the team rolling my tiny newborn back to the OR, a stranger saw what was happening and stopped to give me a hug. I had done a pretty good job of holding it together until that point. It was the scariest day of my life up to that point. Then I had to take him home from the hospital and keep him alive until his next surgery in about 5 months. That turned out to be even scarier. “Does he look blue?” “How much did he gain today?” “I can’t get a SP02 over 75, should I call the team?” Taking him back to the hospital for that second open-heart surgery (the Glenn) after I had six months of learning how he loved music, hated baths, and was a true Wubbanub addict proved to be the most terrifying event yet.
I’m sure you are beginning to see the pattern here. As I prepare to send my now 4.5-year-old son back for his third open heart surgery (the Fontan), I realize this is a completely new and different fear. I’ve now had four and a half years of loving him, caring for him, laughing at him, crying with him and wiping his tears. I’ve chased the monsters away, been his biggest advocate, fought for his services and his education, and put him to bed every night for over 1670 days now, so although the preparation and planning for yet another open-heart surgery is familiar, the fear is very different.
The reality of sending my nearly 5-year-old child back for surgery is completely different from when he was an infant. First, he talks and can tell me exactly how he feels. He tells me he is afraid, and he tells me when it hurts, and he begs me to take him home when we’re at the hospital and he doesn’t want to be there. I hold him and tell him that we will get to go home soon, but his words slice my mama heart into ribbons. He has really big opinions and really big feelings. As the heart mom to an infant, I spent hours rocking the metal crib to keep him happy, changed diapers, fed bottles, and binged Netflix while he slept to keep my brain from drifting to any worst-case scenarios. My job this time is to help him express his feelings, keep him entertained with activities, keep him active and taking walks through the unit, ensure he stays positive, oh and make sure he is eating and gaining weight on hospital food when he subsists mostly on macaroni and cheese and chicken nuggets at home. So the fear now has morphed and changed. It is that I somehow won’t be enough to juggle all of that and how different an extended hospital stay in a city two hours from home with a preschooler.
My take away from this reflection is that perhaps the next time someone asks me “How do you do it?” I may answer honestly and tell them that every new challenge is scarier than the last. That as heart moms, we learn to function in a constant state of fear for one reason or another, but that the exciting and hopeful moments make it worth every single second. That the combination of excitement, hope and fear is our new normal, and as a result it makes every single happy memory and milestone just a little bit sweeter. We aren’t any stronger or more special than any other moms. We have just learned to adapt and overcome the fear, while celebrating the excitement and hope.
-Ezra's mom, Stacy
*Update: Ezra is currently recovering from his Fontan surgery. Follow here for updates.