Every Thursday I look back at a specific day and time that was spent with my daughter Matilda as she waited for, received, and recovered from a liver transplant. She was in the hospital for 72 days and we remained in NYC until she turned four months old.

October 26th, 2012 - preparation

Our lives had been consumed and contained in such a small space. We didn't watch TV. We didn't work. We hardly spoke to family or friends. So when we heard the nurses chatting about the impending "frankenstorm", we were taken off guard.

They told us we should spend the day getting things done outside the hospital because the storm was going to be big and we might not be able to leave once it starts. What?! No way could this be happening. No way the city will shut down. We wanted to be surprised. We wanted to be scared. But instead, we sighed big sighs and did what we were told.

This, on top of everything else, was too much. We felt numb.

We had been avoiding finding a city health care center to get checked for tuberculosis for a couple weeks. It was a routine thing that needed to be done before Matilda could get a transplant. Or really, I guess, before we could see her after a transplant. It seemed silly. Any of the many doctors we now knew at the hospital could do it, but they were not allowed. So instead, we had to go into a public clinic full of germs and sick people. I didn't like the risk of it, but there we were sitting in an office getting tested.

And then, I was a giggling mess, trying not to faint, spilling water everywhere, and causing a scene. Listen. I don't like needles. I have gotten better over the years, but the way the needle goes just under the skin really makes me queazy. Don't get me wrong, for Matilda, I would do anything. But I really was a loopy mess. The giggling was out of control.

Numb one minute, giggling the next. My life felt so weird.

We stopped into H&M to get Matilda a little something. It was nice to be out of the hospital together, doing "normal" things. We were in this horribly sad moment of our life, but we had each other. Maybe it was because we didn't know enough about the storm or maybe our emotions were just tapped out, but we weren't worried. We felt safe at the hospital and Matilda was waiting but stable.

If only we knew - everything was about to fall apart.

share sheet