sleeping beauty

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 27th, 2012 - sleeping beauty

We all got a good night's sleep. Tyler at the RMH, me in the chair next to Matilda. And even Matilda slept, with no issues, the entire night. I had been so wrapped up in how I felt, how Tyler was acting, and how silly the situation over the bed was, that I didn't realize how quiet Matilda had been.

She had been sleeping for a full day and night.

I stood by her bed staring at her beautiful face. She gave me butterflies. I texted Tyler to pick up coffee on his way in, and to let him know I was worried.

I asked if we could bathe Matilda. That usually woke her up. She slept. I asked if I could hold her. She slept. I asked if we could speak to the doctors. Matilda slept.

In those moments, I felt the most helpless. When the worry I felt wanted to shout and jump up and down. When that worry in my heart wanted to cause a scene. But causing a scene does not do anyone any good. We had seen parent after parent make scenes. All it did was make everyone else feel uncomfortable. It did not fix their child. It did not speed up any process. It did nothing but harm. And, I knew that.

I held Matilda all day - looking at her face, feeling butterflies, and softly praying.

Her ammonia level had shot up to 350; normal is 10-15. It can cause brain damage and induces sleepiness (hepatic encephalopathy). I missed my girl. I wanted to see her spirit, I wanted to work at making her smile, I wanted her to see that I was there.

The quiet days of a sleeping Matilda wore me down faster than anything else. One of our nurses saw that I was quickly crumbling and took action, as she always did. She told me that it was Tyler's turn to hold Matilda. She called up the child life people and had them bring knitting supplies. Then she got one of the other nurses to sit down with me and teach me the art of knitting.

Before I knew what was going on, I was laughing. I was feeling accomplished. I had something to do with my empty time. And, of course, I enjoyed all the checking in on me, extra compliments, and the assignments being given to me by Helen.

We all need a Helen. Someone to keep us on task. To keep us looking forward. To lift our spirits up amidst an impending storm.

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