october 14th, 2012

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 14th, 2012

About two weeks had passed since Matilda's exchange transfusion and IVIG treatments to clean out her blood and hopefully aid in the recovery of her liver. Two weeks had passed and life around me was moving forward as if my baby was not still dying in my arms. Her liver was not recovering. And I was angry. I posted this on Facebook after receiving a number of emails, texts, and calls inquiring as to what was going on and why I hadn't posted any updates:
Truth be told, I am having a rough day. Matilda's glucose numbers have been wacky. She keeps jumping from numbers in the 50s to the 90s. She seems more yellow to me and she has thrown up, so we will not be bottle feeding anytime soon. On top of that I feel gross, fat, and have a bad headache. This is so far from how I thought life with a second baby would be. I miss my P Parker more than words can describe and am so sad I am going to miss Halloween with him. My heart aches not knowing when all this will end. I want my life back, I want my baby back, and I want my family back in my arms.
I hadn't posted anything because my anger was too loud and my tears were too wet. I felt sorry for myself. And I wanted my life back. I wanted the life I thought that I would have back. But that life I thought I would have was never mine. It was no different than wishing I had the house I never owned or the job I never landed. But in that moment, on that day, I needed to feel sorry for myself. I needed to mourn the life I thought was mine.

That post resulted an email sent to me by a high school friend Casey. Someone I had not seen or spoken with since 2002. She had lost her daughter unexpectedly and had some tough love to dole out. It was beautiful, painfully truthful, and just what I needed to hear. Here are some bits and pieces from that email:
I hate that your heart is hurting. I want you to fight with everything you have inside of you. Don't you let go of that little girl. I promise you, my Georgia is right there with her, Kelly. I know she is. I have to believe that's how it works. She is right there with Matilda. Telling her how beautiful she is. How strong and brave she is. I'm sending you all the strength I have inside of me. I know you're scared, scared like I was when they called me at work to tell me Georgia stopped breathing. Fight Kelly. I wish I had the opportunity to fight for my girl because I believe she would be here still. You are everything Matilda needs. You will get through this. Matilda will too. I cannot wait. I love you.
So often in life we say nothing. I had said nothing to Casey. I knew that she lost her baby girl, but I didn't know the story and I guess I thought bringing it up would make things worse for her. I could not have been more wrong.

When people are in need, tell them something kind, constructive, and supportive. Ask them about what is going on. Ask them what they miss about their baby. Ask them what you can do for them. This email broke me down. It left me sobbing, not because I was afraid, but because I was so happy that someone else felt my pain. I could feel Casey's pain and for that moment as I read her words I was comforted, thankful, and a little stronger.

Matilda continued to throw up throughout the evening and into the night. They stopped her NG feeds and did whatever else they needed to do in order to stabilize each situation. Not knowing is always hard. If I could have known that Matilda would be offered the perfect liver on her six-week birthday. If I could have known that the total hospital stay was 72 days. If I could have known that she would forever change the meaning of miracle for us. But that is the thing about life, it is not about knowing. It is simply about loving.

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