missing my boy

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 22nd, 2012 - missing my boy

An anger had been quietly boiling all morning. I was exhausted, but trying my best to keep a calm and clear mind. The reality that we could lose Matilda at any moment was present. We were surrounded by reminders of death and sadness on a regular basis. And that was hard.

Parker called on FaceTime. My boy was bright, excited, and happy to see us. He sang us songs, made us laugh, and showed us everything he had been building with Grandpa. He was two and a half. I had only been away from him once. These last three weeks felt like an eternity.

Before saying goodbye, he looked serious for the first time and asked if we could come visit. In that moment, I lost it. That boiling anger roared up into a desperate, fiery rage. All at once I felt trapped and panicked. I began hyperventilating. I felt so far away from both of my children. I was lost. A dozen questions ran like cockroaches through my mind. Pacing back and forth without time to think of solutions, only time to whisper doubts and fear over and over in my mind.

I wanted my life back. This was hard. All of it was hard.

Our nurse returned from her lunch break. She made jokes with Tyler and sent him away to gather coffee for everyone. Then she sat with me. She brought me back to reality by reminding me that the PICU is no place for a wild two-year-old. She asked me how I would feel if he were in NYC but still unable to spend time with him. She reminded me that he is safe. She reminded me that he doesn't want to see his parents like this. She reminded me that I am a mother and sometimes a mother needs to deal with the hard times. All the while she was preparing Matilda, so that I could hold my baby girl. And, as she put her into my arms, she told me that Matilda needs me right now.

She was right.

I sat holding Matilda, taking dozens of photos of her perfect little face. Tyler brought back lattes for everyone, and I was once again reminded that love does prevail. That day I was blessed with long and thoughtful comments on Facebook, emails, and texts from friends and family showing their love and support. Promising me that Parker was happy, well, and, above all, loved. They told me stories of seeing him, how spoiled he was getting, and all the funny things he was saying. Of course there would be times that he missed his mom and papa, but there were also many more times that he was not thinking about us at all. And that was okay.

I held Matilda the entire day. I needed to feel her in my arms. To watch her breathe. And, to smell her head. Honestly, I was afraid to put her down, afraid that she would never return. But it was time. The nurse took her back and laid her in her bed. The doctor walked in with the news that Matilda would be going to the OR the next day for an additional central line placement. My heart was weary. That meant another breathing tube and days until I could hold her again.

My anger had subsided, but tears were flowing freely.

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