a different perspective

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.

As I write my Thursday posts, I go back and read the updates I posted to Facebook along with the comments from my friends and family. Just as I realized in my last post that Matilda was not just for me, but for everyone, I know now that what I experienced was not just hard for me, but also hard for everyone. And because I think that is such an important piece of Matilda's story, I have begun to ask those close to me for their perspective. Kenzie was the first person I asked, we grew up together, going to the same elementary school, attending the same high school, and college, after that. Kenzie's kindness and support is everything that friendship should be. Here's what she had to say...

It was sometime in July or August, but we met for lunch with a friend. June was only five or six months old, and Parker couldn’t get enough of her. He was so excited for Matilda. He was playing with his book-on-wheels that somehow made a detour for his face and cut his lip. He started crying and you comforted him. I was secretly frozen in terror and a little upset at myself because I didn’t feel anything.

Obviously, I felt bad that he was upset, but for some reason, I thought having a baby would make my maternal instincts come flooding in (they have - don’t worry). But back when June was that little, all she did was cry, sleep, and poop. I didn’t need to protect her from much, especially books with wheels on them.

Lunch was finished, Parker was getting restless, and we said our goodbyes. A lot happened over the next month. You moved across the country into a rental with awful wallpaper and had Matilda. I started a new job a few days after Matilda was admitted.

It’s probably not wise to check Facebook the first week of starting a new job, but I did. I googled hemochromatosis and attempted to learn the ropes of my new job while working with a heavy heart. I pulled up your Facebook and refreshed it throughout the day, checking for updates. I regularly called my mom to let her know what June was up to, and she grew accustomed to hearing everything I had found out about Matilda.

With a daughter not much older than Matilda, I could relate to how scary everything must have felt. I hope to never know how scary it was, but every night as I bounced June to sleep, I thought about all of you. June saw her parents everyday, Parker didn’t. June was healthy, Matilda wasn’t. As your trial went on, I held June longer and longer each night, because you couldn’t. This wasn’t a book on wheels. This wasn’t something that a kiss and a hug could cure. You couldn’t protect her from herself.

With MealTrains, donations and gifts, I didn’t feel like I could do enough from so far away. I hung on every word as Facebook was updated. Sometimes things seemed better, but usually they were worse. Matilda was getting oranger, the wrong numbers were getting higher and all but one of her options were exhausted. In the midst of a Hurricane Sandy, she had a fever. From 2,000 miles away, I was sick with grief. As the time spread between updates, I worried. When an update was made, I dreaded it, for fear of what I would read. Even in Montana, those days were dark.

Then the storm let up. Her fever was gone and there was a liver. It was exciting, but that was when I was the most scared. I hadn’t prayed since high school, but I also never needed to pray for something as big as this. I prayed so hard that night, I gave myself a headache. Probably from lack of practice. That post-op update couldn’t come fast enough.

Since Matilda’s miracle, I’ve signed up to be an organ donor, a bone marrow donor, have given 10 inches of myself to Locks of Love and donate blood every 6-8 weeks. I couldn’t help her when she was in the hospital, but because of her, I’m trying to help those that are now.

I like to think of Matilda as my adopted internet baby. I still check updates on a daily basis, but they’re much happier now. And I’m glad.

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