educating

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 23rd, 2012 - educating

I slept really hard for the first time in about a week. Matilda was not fed anything through her NG tube (the tube that went into her nose) from midnight on because they anticipated an OR visit for the following day. And since nothing was in Matilda's tummy, she was not up tossing her cookies every few hours. That, and we had our favorite night nurse.

She had become our favorite for three reasons: she was with us the most, she called Tyler "doctor" in regard to his PhD, and she clearly loved Matilda. So when we had Daliah, I was able to sleep knowing Matilda was in the best hands. And what a difference having a good night's sleep can make.

I woke on the 23rd with new eyes. I had a spring in my step and was ready to take on whatever the day had to offer. So when Dr. Arnon, came in to ask if he could bring in a group of his students for a case study, I told him we would be happy to have them.

I could not control what happened with Matilda, or how she came to have acute liver failure to begin with. But, what I could control was how I could transcend the situation to better the world. Tyler and I are both educators, so teaching brought us both a renewed sense of who we were and what we love to do.

It was that day, in that moment, when I realized my deep passion for brining awareness to this cause. I was naive. I had never considered the need for pediatric organ donation. Nor had some of the medical students - not realizing that a donation needed to come from a baby of similar size. The looks on their faces when they fully realized the situation we were in brought me to tears. One student kept looking at Matilda, then at the wall of cards I had hung, and back at us. She was going beyond the medical information being fed to her. She was trying to empathize and understand what it would be like to live at the hospital, waiting day in and day out for someone else to suffer, so that another could live. That takes seeing a face. Seeing and hearing directly from those who have lived there. That is why I continue to write each week. That is why I dedicate my time toward advocating for Donate Life. That is why I will never stop reliving the 72 days spent at Mount Sinai.

We waited. We endured. We loved. But it was up to someone else, to give Matilda life.