Wednesday, December 03, 2008

We went over to Georgetown this morning for a Hope for Henry holiday party. We did the usual thing where we had a fun bash downstairs for the kids from the outpatient clinic and then we traveled upstairs with goody bags and stuff to give to the kids too sick to come down.

As I've told you before, this isn't always the easiest thing for me. Aside from the pain of seeing kids who are hurting, I often drift back in my mind to when you were up on the floor so often. The strange thing is I started thinking about the bottom floor of Fairview Hospital in Minneapolis and its food court. Not Georgetown at all. Weird.

This time when I went up I was with a Toy Soldier and some people from the company that was sponsoring the party. They were all very nice. I don't know how seeing the sick kids affects other people. To ease my own discomfort and maybe make it easier on them, I told some funny - or at least they're funny now - stories as we waited for the elevators and went room to room. These folks were from a company that makes medicine and we were in a hospital so I stuck to that theme.

The first story I told was how right before Jack was born I took a pill that I didn't know I was allergic to. Mom gave birth to Jack and that same night I had a terrible and then scary reaction to the medicine. I asked the nurses at the hospital where we were if they'd take a look at me - but they said they couldn't because it was Columbia Women's and Children's hospital and I was neither. Huh?

So I left Mom and newborn Jack and walked across the street in the middle of the night to the emergency room at George Washington University Hospital (that's where you were born). It was a Saturday night and some students had been out drinking and fighting and now they were all waiting around - bloodied - waiting to be seen by the emergency room staff. I was behind them in line and my skin was getting worse, it was angry as we used to say, and my chest was feeling bad and my tongue was swelling.

I abandoned GWU and called cousin Ron, who himself works for a company that sells drugs, and he helped get me a prescription in the early hours of the morning for steroids which made the swelling and the rash go down. I spent the next day zonked out in Mom's hospital bed as she entertained all our friends who came to see your brand new little bro.

The other story was about when you were having a tough night post-transplant and your blood pressure was spiking. In the middle of the night after the alarm beeps and bells went off on your monitor, a nurse gave me a Vasotec pill. You weren't so keen to take it, but they said that I had to get you to swallow it.

We were both so tired and at some point while I was negotiating with you I dropped the pill on the floor. I picked it up real fast and finally got you to take it. After you swallowed it, I was certain that I had just killed you with some kind of bacteria or germ that attached itself to the pill during its nanosecond rest on the floor. We were so paranoid about infection - as we should have been. Fortunately, your blood pressure went down and you made it a bit longer.

Ba-da-dum. I got so many of these. Ugh.

When I got home, I found this email in my inbox.

From: mead
Date: Wed, 3 Dec 2008 11:24:20 -0800 (PST)

Subject: Thank you


I was in Georgetown Hospital with my daughter this morning. I asked you who Henry was and you replied that he was in the hospital "many years ago."

I was very moved by your presence and by the wonderful music of the gentleman who sang to my daughter.

My daughter was three months premature and weighed a pound at birth and has spent probably close to two years in the hospital since she was born. She's now 5. Today we were lucky. Only an overnight.

In any event, what I wanted to say to you is this: there is no such thing as "many years ago" when it comes to one's own child and his or her medical travails. I know y ou know this, but I wanted to acknowledge this to you.

Thank you for the wonderful work you are doing, and again, I was very moved by the presence of you and your team.

Best regards,


Part of my discomfort of being on the floor is explaining to another parent who you were. I am very conscious of not wanting to talk about death. I don't want to make it seem that their kid - who might even be staying in the same exact room you used to stay in - might end up like you. 

What is so strange about all this is if someone had said something to me when we were in the hospital about their kid dying, I would never make the connection to you. I'd think, "That's sad, terrible and unfortunate. But it isn't what is going to happen to my Henry."

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