The Bi-Directional Glenn

The Bi-Direction Glenn procedure is supposed to be a less complex open-heart surgery (What is the Bi-Directional Glenn?), but the simple fact remains that Liam will be undergoing a massive surgery in less than 48 hours. It feels weird saying it, but our time in "interstage" is finally drawing to a close.

This is both a time of celebration and a time of fear. As one waxes the other wanes- a push and pull that leaves us feeling relief in one minute (we’ve made it) and trembling in fear in the next. In less than two days, the time of pulse-ox measurements and hawk-like staring for even the slightest changes in coloration or respiratory rates will be over. But there is a catch: to get there, Liam has to be subjected to the scapel again- his scar now a helpful "cut here" for the surgeon.

People have told me over the last few days, "it's going to be fine," or "everything will be ok." This annoys me, if I'm being honest. And I am being honest. To say things are going to be fine is to say I have nothing to fear. Nothing to see here, folks, just a lady who is unnecessarily afraid for her son. As though open heart surgery was as uncomplicated and as safe as letting him go to his very first sleepover. I have said in previous posts this response, although incredibly blithe, is understandable- people want to feel like things are going to be ok because the thought of it not being ok makes them sad and uncomfortable. I get it. Like other people, I'm sad and uncomfortable- this is where I live, so I understand why people don't like it and want to feel differently as soon as possible. Unlike other people, this is my life.

I do not know how to describe what it's like to be the parent of a sweet baby who is days away from a second open-heart surgery, but I will try. Imagine you're rowing a boat filled with little holes on the ocean. You can see land in the distance and you're rowing as hard and as fast as you can. There's a good chance you could get that holey boat to shore faster than the water is coming in, but you won't really know until you're sunk (or until you make it to land), so all you can do is pray the boat gets you where you need to go and row like hell. There are moments when a wave carries you forward and your spirit is lifted and then there are unpredictable rip tides cruelly pulling you back out to sea. The best you can do is tighten up your life vest and set your sights towards land. If this thought experiment makes you feel by turns in and out of control, scared, and helpless, well, bingo.

Even as I try to keep my eyes focused on land, I can’t help but see the overgrown jungle beyond the beachline. In the last few days/weeks, Liam has made incredible strides in his development. He smiles often, he loves peek-a-boo, and his coordination is getting much better. We're witnessing this amazing time of rapid development, but it comes with a bitter-sweet tinge. All that work will be paused after Thursday- he will need an incredible amount of time (6 wks) to heal and I worry he will be back at square one when he's strong enough to begin again. 

But those thick jungle vines are post-op troubles and we have trouble enough for today. 

I had the opportunity recently to talk with a friend who is going through a journey of her own about how to accept fear and find joy. The trick is not to convince myself that I am not afraid, but to embrace it and call it by name. When I can name it, fear has less power over me. But to walk undrowned is not the same as living. To truly live, I must find joy even as the riptide is pulling me out to sea. Today, I find joy in watching my son dozing in my arms, his little hand holding my shirt, his little mouth working intermittently on his pacifier. He is safe here in the crook of my arm and recognizing the beauty of this moment is a victory.