One year ago today, our illusion shattered.

A year ago, we thought we were taking our baby to another pediatrician appointment to talk about acid reflux or maybe a milk protein allergy. Instead, we entered a nightmare we never imagined.

I thought there would be a finish line. Over the last year, we’ve pulled every lever we could find, trying to find our way back. I’m slowly starting to accept that there is no going back to ‘normal’. Whether we’re waiting for a transplant or living life after one, this journey has changed us forever.

It doesn’t get easier. We just become more determined to build our life around the fear. We cry, and then we make sure to laugh as much as possible. We soak up every good moment because we know there will come a time when we’ll need to draw on those reserves of joy again.

It’s like living on the edge of a knife. Always balancing. Never looking too far ahead. Never letting yourself slip.

Today I’m looking at these two pictures and feeling something I don’t even have a word for.

I’m so incredibly grateful she’s here. And I’m still grieving everything we lost a year ago.