Holding Johnny

I had the day off today, so this morning I went on a long run. I drove over to Minneapolis and ran a route that isn't very far from Children's Hospital. I would occasionally take a break from hospital life with Johnny and head out for a run on the same route. Kind of a reset of the mind for me. It always helped, and still does. Then I would head back to the hospital, feeling stronger, more confident about how Johnny was doing, almost always with a better perspective. For a good part of the run this morning, my thoughts were on Johnny, as they often are. Today is September 19th. It's one month from the day that I carried him into the hospital for his surgery, and later that morning gently set him down on the hospital bed, releasing him for the last time. We held him those last few hours before he died, but it was a far different situation from August 19th. Back on August 19th, he wasn't connected to anything. I remember he was wiggling, he was looking at me, and making sounds, full of life and energy.

I want to remember everything from that morning, every little detail, everything Johnny did, everything I felt. But I know I will forget far more then I remember, and that's hard to come to terms with. I am already forgetting things. I can remember that it was really nice to hold him, and that he was calm and easy to comfort that morning, but I can't remember exactly what it was like to feel his weight in my hands and arms, against me, as I held him. How we wish we could hold him again for a few minutes, just to remember and experience those feelings again.

We left the house at about 5:45 am that morning. I drove Johnny down to the hospital and Lea stayed back at the house to get Juliana off to pre-school before she would join me later. She was up early with Johnny to help get him ready. She held him close for a little while, before we placed him in his infant carrier for the trip to the hospital. She has told me since that time that she had the usual fleeting thought wondering if that would be the last time she would ever hold him. You can't help but think that sometimes when you have one of these kids with a challenged heart. You just don't know. You stay positive and remain strong, but it's always in the back of your mind. It was that morning for both of us.

By about 8:00 am that morning, I gently placed Johnny down on the hospital bed and the doctors gave him some medication so he would drift off to sleep, then I left so they could get him ready for surgery. About 2 hours, that was it that morning. I wish I could remember more. Lea arrived later and we were able to spend some time with him, but we couldn't hold him, and he was asleep.

For those 2 hours or so, I held him close most of the time. He hadn't had any nutrition since about midnight so I wanted to keep him nice and comfortable and relaxed so he wouldn't wake up, knowing he would be hungry. He occasionally stirred awake and looked around and looked at me. He would wiggle a little, maybe cry a little cry before I would get him back to sleep, but I remember he was really calm and comfortable and easy to hold and take care of that morning. At some point I remember he gave me a little smile, and I remember thinking how nice that was, like he was reassuring me that things would be okay. I remember patting his little backside a lot the way that he liked. It was one of my best comforting moves, and always worked. Not long after we arrived, I wrapped him in a hospital blanket, the way he liked to be wrapped. I remember the room seemed cool that morning. I remember someone had turned on the TV and the Olympics were on with the mute on. I can't remember the events, but I glanced at the TV screen now and then, and later turned it off not that interested in TV at the time. I held him standing most of the time, rocking back and forth a little, and when I needed a break I sat in one of those uncomfortable hospital recliner chairs. We happened to be in the same room that we were assigned when we arrived at Children's Hospital on Saturday, April 26th, 6 days after his birth. I remember holding Johnny and thinking about that and all that we had been through together in the past 4 months, since we had arrived at that room back in April.

And that's about it. Just a father holding his son, giving him comfort, keeping him calm, holding him close. Completely uneventful if not for the reality now that it was the last time we were together like that. Now it's an important and highly valued memory I'm trying to hold onto, and writing about it here will help.

Children are so precious. Hold them close when you can. Your own children, grandchildren, nieces, nephews, cousins, children of friends, however you know them, they are all blessings....I'll probably hold Juliana a little longer, with a little tighter grasp tonight before bed. Why not? What's the hurry to let her go? I've got time and I don't think she will mind. It will be good for both of us.