October 29th, 2012 - hair loss
Tyler and I were up early. We sat quietly together staring up at our daughter. She was ours, despite the fact that she was being kept alive by more machines and wires than seemed possible.
Lynn was the head honcho of nurses. She always seemed to be placed with whoever was most in need. We had her our first few days, and we had her today. She marched in and, first thing, gave Matilda a bad time for causing such a stir, in the worst time possible. She teased her for apparently feeling overshadowed by Superstorm Sandy. Such a prima donna - that Matilda Mary.
Then, she turned to us and asked what happened. We gave her the full report even though we knew she had just heard everything from Lindsey. She listened and then stood up, saying "let's get to work". Rounds were not likely to happen for another hour. But her experience provided her a to-do list that would lead to the best care as soon as possible.
There were signs taped to the seizure monitor that clearly said not to mess with anything. Not to take the wires off of Matilda. Not to turn the monitor off. So when Lynn walked over and turned everything off, we were confused. But it wasn't long before she began explaining that whatever happened the night before had already happened. Right now Matilda was not showing signs of distress or seizure, so right now all that mattered was assessing the damage.
Assessing the damage. They were able to keep Matilda alive, but at what cost? The reality began to sink in.
I was a bit of a zombie, rightfully so. I watched Lynn as she worked away at removing each wire, so carefully from Matilda's small head. And that was when we both saw. Her hair was falling out. I didn't cry outwardly, but tears streamed down my face.
It seemed so silly and I knew that. It was hair. It was nothing. It can grow. But I wasn't crying about the hair, I was crying about what it represented. I was crying because everyday of her life I had loved running my fingers through her hair. I was crying because I knew it meant her body was so sick that her hair no longer mattered. I was crying because I didn't know if I would ever see her in pigtails.
Lynn asked me when the last time I ate was. I told her Dr. Satchell brought us granola bars. She rolled her eyes and sent me out for food, promising that if the doctors came Tyler would text. So I went.
The city was empty and quiet. Nobody was at Starbucks, a note apologizing for the inconvenience was on the door. The shutdown subways prevented people from getting to work. I tried Dunkin Donuts and they were there. I ordered enough food to last us the day and the biggest coffee they sell. I felt lost. And alone. But I didn't want to feel hungry.
Matilda needed a mom who didn't cry over hair. Matilda needed a mom to sing her songs, hold her hand, and pray loudly. Matilda needed a mom who would stand by her during the scariest storm of her life.
