Holding My Breath

Today Ellie slept a lot. Yesterday we started carrots. And once again I found myself holding my breath. Is she growing? Is she sleeping better? Is she reacting? Two weeks of great progress and no symptoms. Yet it all comes rushing back like a bad dream. It brings me to a place where I wonder....regardless of the progress we make, or how old she gets, will I ever breathe normally? Or will I forever be at risk for that sudden streak of panic? Those moments where all of the possibilities run their marathon through my head while I remain breathless?

She has made incredible progress over the last few weeks. And then...

Last night she had a routine night time bottle, and coughed. I sat her up for a minute and it stopped.

Tonight she had a routine night time bottle, and then coughed. We got her up for a few minutes and it stopped.

And again it had me holding my breath. Was it something? Probably not. Again I march to the fridge where I keep her spreadsheet and log: coughing.

Holding my breath. Watching for symptoms, signs, problems. Stealing my joy, and robbing me of the blessings we have seen. It pushes me back to my knees. It reminds me that it is not I who makes the world spin, and it is not I that am in control. And forces me to take a deep, slow, deliberate breath.