transplant candidate

Time at this point was undetectable. I had not slept in days and was as awake as ever. A large group of doctors started gathering outside Matilda's hospital room. I don't remember much about the conversations that followed. I just remember the pediatric gastroenterologist sitting us down and very calmly showing us a piece of paper.

On that paper there were numbers, lots of numbers. He showed us the first column of normal numbers and then the second column of Matilda's numbers. He explained what each number meant, what the function was and what it told us about Matilda. I could not comprehend it, not because I am not capable, but because the situation looked so bad that I did not want to comprehend it. Things were not looking good. I can remember Dr. Beg say, "If I thought I could fix your little one, I would, but unfortunately she needs more help than we are capable of providing here. She may need a transplant."

The plan was to contact Mt. Sinai in New York City so that she could begin the process of becoming a transplant candidate.

I took a deep breath. We began planning. I would go with Matilda. My mom was willing to stay in New York longer to care for Parker. Tyler was not worried about work.

I could only focus on one task at a time. Thinking of the future, planning ahead, was too overwhelming and exhausting. I remember just thinking that if we could get her to NYC alive, then they could save her. While we waited for transport I posted this on Facebook: "On our way to NYC in case a liver transplant is needed. Please keep praying, things are not looking good."

I had to sit in the front of the ambulance, which I hated because I wanted to be right with Matilda, to hold her hand, to sing to her, to tell her everything was going to be okay. I took one last picture and posted it to Facebook with the caption "my sweet Matilda" before getting into the front seat.

The drive to NYC was uncomfortable. My mind ran in circles but my thoughts were irrational and did not amount to anything constructive. I knew that I should try and get some sleep. I tried to pray, but my words kept getting interrupted by thoughts of Matilda's funeral. Of explaining to Parker what had happened. Of a life without Matilda. I did all that I could to push those thoughts out of my mind. I continued to pray until I feel asleep.

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