When Henry was in the hospital, there was an 18-year old named Charlie there waiting for a heart transplant. You'd see him walking the halls, often with a med pump slung around his shoulder. Told he couldn't carry it around, he worked with hospital staff to configure the device to keep him moving. He figured out how many laps of the floor he needed to do to make a mile. I asked him about the walking once and he told me he was doing his best to stay in shape while he waited for his heart.
He marked off an area outside his room with tape, put a couple of chairs and a small table there, and called it his porch. He might sit out there with visitors, chatting or playing chess. He was a budding film maker. Stuck in the hospital, he made it the set for his movie. It was a sucky situation, but he did what he could with it.
There were days when I thought I would go crazy if we didn't get out of the hospital, but watching Charlie doing his laps and making his movies and sitting on his porch, I'd think I can do this.
Charlie's mom was one of the first parents I met. I had been avoiding people, especially the ones who looked well established. We didn't know what was happening with Henry, and I thought I wouldn't make any ties because we weren't going to be there long. But one afternoon, I was in the parents resource room using the computers, and it happened to be the coffee hour. I took the cookie offered me and then felt like I should talk, or listen, to these other parents gathered round. Charlie's mom talked about years surgery and meds, of being in and out of the hospital, of how she kept two of all her toiletries with one set in a bag ready to go to the hospital at any time. And I thought I don't want to be her; I don't want that life; I can't do that.
I'd go on to talk to Charlie's mom many times. She encouraged me on the dark days, talked about the good times, the times out of the hospital. When I wondered if I even dared hope any more, she told me to always, always hope. Have high hopes, but no expectations, she said.
The last time I talked to Charlie's mom was December 13, 2007. We had been discharged from the hospital in to a snowstorm that left Boston in utter gridlock. After going maybe a quarter of a mile in 2 hours, we turned around and went back to the hospital. Brian let me an Henry out on the corner to walk the last couple of blocks while he sat in traffic. Once we got back to the hospital, I couldn't stop crying. I cried because we were still there, it seemed we couldn't escape. I cried because I worried about Henry who got some of his meds late. I cried because this first test of me taking care of my sick baby hadn't gone so well. Charlie's mom told me about one time when Charlie really needed meds and she had to walk to the pharmacy in the snow to get them, how scared she was, how it turned out okay. She talked to me for a long, long time. She told me I was a good mom.
The next morning we left the hospital, and I never saw Charlie's mom again. I would get the occasional email update from her and may send her a quick reply, but that was all.
I remember getting the news that Charlie had gotten his heart. I cried that their wait was over, and I cried for the family that I knew nothing of who had lost a child to give up that heart. I rejoiced for them when good news came and sent out good vibes and prayers and hope when I learned of setbacks.
We hadn't heard from Charlie's mom in a while. We knew Charlie had had some major setbacks late last year, and we had wondered how he was doing.
Today I got an email from Charlie's mom about a fundraiser to set up an endowment fund in Charlie's name for Children's. I had to read through the whole string of messages and then Google Charlie's name to really believe it was true. Charlie died back in early December. In some ways this doesn't surprise me, and yet I always had hope for him.
So I'm sitting here on this snowy day, thinking about Charlie and his mom, another mom with an aching heart.