october 19th, 2012 (part 1)

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 19th, 2012 - part 1

I was overwhelmed and tired. Family and friends called or texted daily asking very specific questions and explaining to me what they had read, researched, or heard about pediatric liver failure, neonatal hemochromatosis, and organ transplants in newborns. My mother-in-law joined a group on Facebook and had urged me to join. I didn't want to, I never did. There was something about it that made things too real, too hard. I didn't want to know what did or didn't work with other babies. I didn't want to hear what hospital was best at what, and I certainly did not want to stare at any numbers. I just wanted to be with my Matilda. I wanted to trust her doctors. I wanted to hold my breath until it was over.

But one mother sent me an email. She told me that my mother-in-law was worried. That she remembered feeling so helpless. And that her daughter was happy and well. She kept writing to me, responding to updates that Kathy had posted on the group's page, or letting me know that Matilda was in her prayers - that I was in her prayers. She wrote to me four or five times before I responded. I asked questions. She asked me questions. I told her I hated this. She told me she did too. I told her I was worried about Parker, how this would mold him, how the thought of him missing me filled my heart with pain, how I missed his smile, his laugh, his everything. She told me that going home to her son after a day at the hospital was both comforting and challenging. Making choices as a parent always has its ups and downs. It was nice. She didn't have to reach out. She didn't have to be so kind. She didn't have to take the time. But she did and she was so thoughtful in her responses. I only hope that I am now able to be that voice to someone who needs it.

I do not gracefully take help from others. And here I was in a heap of kindness by more people than I could have ever imagined. Sometimes we need to be reminded of the love that this world has to offer. Some days I wish Matilda was not the one chosen to shine a light so bright that no one could avoid its message. But, everyday I am proud to be her mother. I am humbled by the lessons learned at her bedside. I am certain she has changed this world.

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