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.
November 2nd, 2012 - the 6-12 hour wait
We were back in the PICU, in Matilda's now empty room. I curled up in the chair that had become my resting spot for the last five weeks, and I held on to Matilda's blanket. There is no describing what I felt. Like times before, sitting in this same spot, my mind raced between logic, delusion, and hysteria. We had 6-12 hours of waiting for a phone call - a phone call that would result in either the worst day of our lives or the best.
A part of me wanted to prepare for the gloom of bad news - to play over in my mind how I would react or what would happen if she did not survive. Would I scream in horror like the mother who lost her little one a few weeks earlier? Would I hold on in disbelief until she was back in my arms? But I didn't let myself think those thoughts. I literally pushed them out.
I didn't want to know. I didn't want to focus on the sad. None of this was sad. Unfortunate, yes. Not what I expected, yes. But, it was Matilda's life. This was her life. If she didn't make it, I wanted to focus on every last second that I was able to love her. Because if there was anything that I knew for certain it was that Matilda had a beautiful life full of more love than anyone I had ever known.
And so I sat in that chair and I replayed every beautiful moment I could muster. Like when she was born and the first thing I thought was that she looked just like her brother - but miniature. Her baptism at the hospital, where she awoke and gave me eyebrows as if to say everything would be okay. Or, holding her after way too long and receiving a smile and a nudge. All the times Tyler and I rallied to cheer her on, to try and teach her new things, to read her books, to sing her as many songs as we could. The long nights listening to music and rubbing her feet, her hands, her little head. The triumphs we shared when a diagnosis was made, when a treatment was in place. The hope we felt when all seemed lost. The love we were given when nothing could be done. Oh, the love we received. The notes from people all around the world praying and supporting us through each long day. The countless people who sent us food, words of encouragement, and gifts to occupy the time.
Every moment with Matilda was celebrated. It was beautiful. And I was in love. I felt more love in this little hospital corner than I had ever felt. And Matilda felt it too. So yeah, she was sick, she was losing her life one day at a time, but each day that she was alive was full.
I feel asleep on that chair waiting and knowing that when I awoke, no matter the outcome, we would celebrate. We would celebrate the love, the beauty, and the life of Mighty Matilda Mary.