May 2019

I can't sleep.
So I'm researching public records of the congenital heart surgery database (I know, I know). This feels like it gives me a tiny semblance of control over a situation that is absolutely and completely out of my jurisdiction.
My fears have been tangible this week. I can feel them resting heavily in the back of my throat and, every time I eat, squeezing my middle like a lead vest. Uncomfortable and all too familiar- it makes me want to barf.

Louis had a few check-ups late May and we are focused on helping the squeeze of his heart as it has not recovered how we would have liked, (from his cardiac event of last August) rendering him still in compensated heart failure.
God, damn it.
Now I'm jogging down the Google rabbit hole of heart failure therapies and treatments, and I'm searching for clearer definitions of ventricular assist devices, and reading journal articles of pediatric heart failure and prognoses. STOP

I can't stop. I can't shake the feeling of waiting for the other shoe to drop and I am so weary from the surprise of that shoe and I am out of shoes. Stop.

Sometimes it can feel unproductive, our time spent searching and in surrender for answers and solutions not easily found.

Doctors appointments transport me to a previous season I'd rather soon forget- filled with anxious waiting and endlessly fearful hope in the dark. They've broken me open into something I never thought I'd be- someone more grateful, more determined, more loving.
As we face another hurdle in the unknown that is congenital heart disease, I am reminded that perspective has written a very different list of thanksgiving for our family. I am grateful for Dr Heather Sowinski and her unwavering patience, thoroughness, and thoughtful care. I am grateful for Amy Neumann who always brings us sunshine and asks the hard questions I'm sometimes unable to articulate- for being a part of Louis' diligent and constant care.
I'm grateful for afternoons spent pulling weeds in the front yard and digging in the dirt while Dan and Louis and I wave at every passing car. I am grateful for ice cream dates and Louis' ability to delay bedtime a full 2 hours with his love of books, his hungry belly, and his genuine sweetness. I am grateful for every single exhausting moment that I get to share with him. He is kindness and goodness and light.
My heart is wrung out for my darling Louis and his season of endurance-immeasurably larger in it's self because that is what growth and pride and resilience do.

It's a marathon, not a sprint. So we press on with bated breath until the next check-up in early July where we will decide if he will need an additional team of experts aiding in his care.
Pray for rest and recovery of Louis' heart, and strength for mine.