october 11th, 2012

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 11th, 2012

On this day I was trying to remember what Parker was like when he was almost three weeks old. We were living in Australia, he was exhausting because he never napped. I thought life was difficult. I convinced myself it would be easier if we were home. I wanted so badly to have the physical support of family. To show off my new pride and joy. To take a nap, shower, or eat something while someone else rocked my stubborn boy.

So much of that experience prepared us for this one. Living in a small space, away from family, with strange tasting food. Yet, one thing was very different. While I spent most of my energy trying to get Parker to sleep, now I spent most of my energy trying to soak in the times when Matilda was awake.

On this day, she reminded me so much of Parker. I could see his spirit in the way she fussed and tried to wiggle free of her swaddle, her tubes, and her sickness. It brought me so much happiness and filled my eyes with tears. That was the baby I knew she was. That was the baby I wanted to bounce on my lap. That was the baby that was going to fight this. I saw it in her that day.

I again found myself sitting there, convinced that life would be easier if only we were home with family by our side. To watch over Matilda while I played with Parker. To be able to hold Parker and hear all the funny things he had to say. That stubborn boy of mine prepared me for this new path I was shoved down. He was so far away, yet I could feel his presence right beside me. His spirit was living inside of Matilda. He was protecting her and she was letting me know that.

Shortly after taking this video, Matilda fell into an exhausted sleep. I posted this on Facebook:
One of the doctors just came in to tell me that Matilda's ammonia levels jumped back up to 250. So she is getting more IV medicine tonight. I asked if there was any indication that her liver is repairing itself and she said not yet. Please keep praying for sweet little girl.
I held her for as long as I could while they filled her with Albumin. And when I was not praying, I was thinking about my baby Parker. The one who would not sleep and I realized that he was saving it all up for his little sister. So that she could have it when she needed it most.

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