8 days ago I nuzzled a 3yo snuggler awake. My touch was soft, gentle. She didn’t want to wake up yet but still she turned to me and smiled.
This morning I settled a thrashing 3yo awake to shake her from her own nightmare. “No, no, no!” she wailed and rolled and screamed. When she felt my touch, she flenched and fought more. She thinks I’m at her bedside to help a stranger force pricks, pokes, and pain.
8 days ago, my brave and compassionate 5yo comforted her little sister. “It’ll be ok, Annie. I’ll push you for a ride around the hospital.” Yesterday, Audrey clawed my legs and shrieked in hospital bathrooms, protesting having to leave me for another night. “No one ever let’s me do anything here!!! It’s always about ANNIE!”
8 days ago, I was dreading but hopeful about Annie’s third open heart surgery. Today, I’m sitting next to my normal acting girl who’s still in the ICU because of a post op complication. Every morning the anxiety grows again as a team reminds Annie that she can’t eat at 4am, X-rays her at 5am, then starves her until 9 debating their decision. Annie has a pleural effusion, which is a significant amount of fluid filling up the pleural space between her right lung and chest wall.
I can hardly remember who we were 8 days ago: rested, agreeable, thinking we might have gone home by now. Now in survival mode we’ve forgotten about home. Trading off nights asleep on hospital couches, arguing for midnight meds to be moved, pretending the beeps aren’t sounding, trying to manage my own trauma every time blue scrubs come through the door.
Last night we asked each other why we wanted this. Today I’m knowing my name is the one on that consent form. I’m responsible for her nightmares, her real life terrors that are justified. Our decision is the reason for the distress and dysfunction and desperation we can’t escape right now.
We’re thankful Annie’s surgery went well but we are weary in the waiting. We have hard days behind us and hard days in front of us. This strange fight for survival isn’t over yet.