I started reading Dr. Livingston's book after the guys went to sleep tonight. Mom was at her book group. It was hard but good to read. It reminded me of the blog that I kept when we got to Minnesota and you died. I reread that by accident the other night as I was getting ready to leave work. It still makes me cry just looking at the pictures.
Dr. Livingston didn't know his son Lucas was going to die when he started keeping his journal. But there was the possibility. There were a lot of similarities in your experience and his son's. Both of you died post bone marrow transplant from complications caused by GVHD. Lucas was a patient on the eighth floor at Hopkins. You were only an outpatient on that floor. When you were admitted I am pretty sure you were on 5.
As I read the book I kept crossing my legs together tightly. I do that when I am at the dentist. I felt physically uncomfortable as I read about Lucas getting sicker and sicker, and his dad not being able to do anything about it. I stopped reading when I got to the part where Lucas died. Mom came home right about then. The second half is about his grief. I will finish it tomorrow.
When I closed the book I put on the TV and there was a guy I used to know being interviewed about a book he just wrote. It was "jarring." I don't know where that word comes from, but it described how unsettled it felt. Even though it is supposed to be serious, this person's book seemed really silly compared to what I just read.
When we started doing the PGD Mom asked me if I would keep a journal of how I felt about what we were doing. I know she wanted to write a book about it back then because it was so new, important and hopeful. For some reason I didn't want to and she went on and kept journals on her own. I am glad she did. I should reread those sometime, too.
I think my reason for not wanting to write was that I was just so incredibly confident that you would live and that there would always be time to write about how your life was saved. I do regret that now. I wonder if it would have been different if they had blogging back then.
Just like wishing I had taken more photos of you, I wish I could have written about more everyday stuff with you. I wish I had written about the little things that happen that tell what kind of guy you were and what our relationship was like.
Now during the course of any day I'll have a very vivid memory of a certain moment in time with you. Last week I was remembering sitting in the parking lot at Target in Minneapolis listening to the Arthur and Friends CD in the car while Mom shopped for Pokemon and other fun things for you and Jack.
You couldn't go inside because you were immune compromised. Your favorite song on the CD was "Jekyll/Hyde," which I think was sung by The Brain. We probably played it loud and over and over. I seem to recall Jack not liking it. But what did we say to each other, what jokes did you tell, what did you and Jack say to each other. Were you eating anything. Did we call Mom on her cell phone inside and ask her not to forget something or another. I want that stuff.
What I really wish I had was a journal that captured Henry moments like the Joe moment I had tonight.
I was with Jack and Joe upstairs in our room. Emptying change from my pocket, I saw Joe perk up at the sound. He wanted the coins. I told him he could have them and he should take them into his room and put them in his piggy bank. I turned to talk to Jack and I heard the gumball machine handle being turned. I realized that instead of the piggy bank, Joe was making a deposit in Calvert Street Branch of the First National Bank of Tooth Decay. He is a rascal, plain and simple. I hope "rascal" isn't what you call a criminal at 3 years of age.
Joe used a dime, not a quarter, and the handle wouldn't turn. It was stuck. I tried putting a quarter in and it wouldn't go all the way in. I was very bummed. I tried to get the dime out with a tweezer and then I turned the whole thing upside down and shook it. Nothing worked.
I told Joe that I was upset with him because I had told him he could have the money for his bank and he used it for gum instead. And then I pushed things a little further and said he broke the gumball machine that I had bought especially for Mom and that we had for less than a month. I wish I hadn't been so harsh but I was really mad at him. Interestingly, he didn't cry. He also didn't apologize, which just made me madder.
I decided to cool off downstairs and just get over it. It is only a stupid gumball machine.
Later on when we were getting ready for bed, I read him a few books and then I turned off his light and we snuggled. What was nice was we started having a talk in a whisper about his day. There was something just nice and special about that - I can't explain why. Then out of nowhere in our conversation he whispered, "I am sorry that I broke the gumall machine." Wow. I gave him the biggest hug and told him that he was a really big boy for saying that.
That is what I want to remember about you and me. Pictures just don't do it.
When I was finally going to sleep tonight I had a clear picture in my head of cardiac PICU at Boston Childrens. Instead of you I was thinking about the crib right next to yours where there was a little baby boy at the start of one evening who totally vanished without a trace by morning. I remembered that there had been something significant about his name. Even though Mom was drifting off I asked her if she remembered. That baby was the first -- and I was hoping the only -- Henry who I would know to die much too young.
Good night sweet boy.
p.s. Mom fixed the gumball machine. She's a champ.
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