There was a steep learning curve when we first became Lily’s mom’s. While we had known from the beginning that Lily had “heart issues,” we didn’t truly begin to understand what that meant until our first appointment at Sick Kids. We met Lily’s foster mom in the waiting room of the ECHO lab and were perfectly happy to let her take the lead, comfortable playing the role of the casual observers. To our shock though she was just as happy to hand the reigns over to us and forced us to jump head-first into our new role as mothers. In the hour that followed, I learned on the spot how to try and comfort Lily during a needle poke, how she preferred to be swayed instead of rocked as she drifted off to sleep and how quickly she could squirm out of the most tightly swaddled blanket. I felt totally and completely out of my element and it wasn’t long before my self-confidence, which had been high after years of hearing how great I was with kids and what a great mother I would be, started to plummet. In the moment where I truly became a mom, I had never felt more like a fraud.
And this is the truth: the learning curve is steep for all CHD parents. Even when you have the diagnosis early: you’ve prepped yourself with all of the reading and research and you’ve reached out to other parents who have travelled this road before us, there is nothing we can do that can prepare us for these first moments. Alongside the “normal” firsts: counting fingers and toes, trying to distinguish between cries, changing diapers while trying not to turn on every single light, you are now thrown head-first into this unexpected world. While I was shocked at how quickly this world became our new normal, standing beside Lily during that first ECHO, I felt as though I had just jumped off the edge of a cliff and didn’t have a clue what was waiting for me at the bottom. Then, out of sound of the wind rushing through my ears, came a firm but gentle hand on my arm and the most incredible words I had ever heard: “You’re doing great Mom.” It was exactly what I needed in that moment, a small bit of encouragement to help me see that I wasn’t a fraud, that Lily and I just had to figure this road out together. We learn fast that we can’t always protect them the way we want to, that we can’t keep bad things from happening. But we also learn, just as quickly, that we can hold them closer, comfort them, find ways to help them work through their own fears and know, always know, that they will never face any of this alone. We don’t always know the right steps to take, the right path to follow and we often find ourselves relying on people to help guide our decisions in the hope that it will help our children survive, but we do know how to bring real life into this medical world; we know how to help them not just survive, but live.
When I think about Lily, at 5 days old, going through her first heart surgery alone, it breaks my heart. While I know that there has always been a “Team Lily”, thanks to the many nurses who stopped in her room on 4D to tell us about how they were there to watch her — spending time snuggling her up while they we were working, on their lunch breaks or even once their shifts were done, there is nothing I wouldn’t give to be able to go back in time and be with her, to experience those first moments right alongside of her. I want to be the voice gently whispering in her ear, “You’re doing great baby” and bring her the same comfort that a nurse named Jane once brought to me.
Crystal is a regular blogger with Cardiac Kids read her bio and Lily’s story click here
Check back next week for a very special guest post from Kathryn about being a “CHD Sibling”