Sunday, October 22, 2006
It is the start of the Henry Birthday Pageant. All of your doctors came into town for it.
Actually, there is a meeting of the Fanconi Anemia Research Fund in Bethesda that they have all come to attend. On Thursday night we went out there with Joe and Jack to say hello. We saw Dr. McMillan, Dr. Auerbach and Lynn and Dave Frohnmayer.
There were a few other "Fanconi Families" there. One family is the McQueen's of Richmond. I wonder if they know about Jared DeMarco. The McQueen's are super nice. They are raising a lot of money for research. I met the kids for the first time. There is a daughter and the little boy, Casey, has Fanconi.
He is 7 years old. Very handsome guy. I had the usual feeling of just wanting to hug him tight.
It was especially nice seeing Lynn and Dave. I was remembering when Dave had a heart attack when he was here in Washington years ago. You were still around and must have been well. We lent Lynn our car and tried to help them out as much as possible. Luckily he was in a room full of doctors when he started to have trouble. He came through it all okay.
Lynn and Dave lost 2 daughters to Fanconi and their other daughter, Amy, has FA too. She is in college. There are two sons as well. Honestly, I do not know how they do it. On top of running the Fanconi Anemia Research Fund and being a parent, Dave is the president of a college. That is a huge job.
Last night we went out for dinner with Dr. Auerbach. It is always nice spending time with Dr. Auerbach. She said that Dr. Gillio was here for just a little bit and then headed out. After dinner we met up with Dr. Wagner and his wife. We talked a lot about you -- one of my most favorite things to do. Dr. Wagner remembered how he used to see you at hotels and Georgetown when he came to DC. Mom and I learned a lot more about you and what happened, and how Fanconi transplants are going now. They are going much better. Timing. Timing. Timing.
Dr. Wagner is an amazing man. You and Fanconi Anemia let me and Mom meet really remarkable people -- people who we probably would never meet otherwise.
We talked about the fact that you've been dead four years. To me that is officially way too long. I can't say, "he died a year or so ago," anymore. I think I wrote "dead" here because it is harsher than "gone." I feel like you've been dead, not gone.
Dr. Wagner, Dr. Auerbach, Dr. Hughes, Lynn and Dave are Tzaddikim. A Tzaddik is a righteous person. I feel fortunate to know them. I feel fortunate to know there are people like them who devote themselves to saving lives. It makes me feel hopeful.
Yesterday during the day we went to a farm with Susan, Simon and Alex. I asked Mom about the pictures we took of you and Jack at Butler's Orchard. She is going to find them for me.
Today we went to a book signing at Politics & Prose. Jeffrey Goldberg wrote a book. Mom just read it and I will read it when she is finished. I think it will be weird to read about someone you know. Maybe that is why I haven't read all of the book that Mom has written about you and her.
I remember buying Harry Potter CDs at Politics & Prose with you and Jack. Jack was psyched he went with us today because some of his Gan buddies were there, Sam Shoyer and Jacob Stern. Both of you made the best friends there. Mom and I are a little worried that Joe doesn't have any close friends like you and Jack have.
We are going to go with Simon to Cactus Cantina on Wednesday night for your birthday. Ari and Jake, are coming too. Today I was looking at the picture of the four of you -- Henry, Simon, Ari, Jake -- that I have in my Henry memory box. That made me sad. Mom is really sad right now too.
Twice in the past few days someone has asked me, "Do you know what the worst day is?" One was a friend from work and he answered his own question, "the day we start daylight savings time." The other person was Jack. He said the worst day is the day before school starts.
I didn't say anything when they asked that question, but my mind was shouting "October 25!" I think that is the worst day until December comes around and then it is definitely December 11.
The Cardinals are in the World Series. We are pulling for them. I hope Aunt Jen gets to go to some games. She went to one of the Championship games. I don't know if Cousin Hannah and Uncle Dan got to go.
Hey, I wanted to tell you a funny story. We were telling Papa Teddy about Jack's saxophone lessons and he told us how we came to have the instrument. Your great-grandfather was a used car dealer in Brooklyn. He bought a car from someone or someone traded in a car and guess what they found in the trunk.