Thursday, June 24, 2004
When I was driving home last night I was listening to a special on XM radio that was playing the 100 greatest songs from the movies. The first song I heard was "Maria" which is from a musical West Side Story. I love the song and the movie. The next song was from a movie called Rocky, which is the story of a boxer - a man not a dog. I was feeling really good from hearing "Maria" and got excited for the Rocky music. But when it came on I just burst into tears. What, huh? I wasn't prepared for that to happen. I tried to figure out why and the only thing I could think of is that when the music to Rocky started to play I began to picture you with your punching bag in your hospital room. We had gotten you the punching bag and gloves to keep you active when you were in for transplant. Then when we went back the last time, we requested a bag and gloves again.
The number one song in the movies is "Somewhere Over the Rainbow." It is hard to argue that one.
After I got home, Mom and I took Liam back to his house. Liam and Jack had been playing with your R2D2, the one we bought when we broke out of the hospital for a day back in Minnesota. Remember how it would beep and talk and roll across the floor. I think it is still working on the same batteries that we put in for you. When we were leaving our house Liam asked if R2 could go for the ride back to his house.
Liam's mommy and daddy are in Seattle, where Liam's mom had a bone marrow transplant last summer. Mom and I made two stops on the way to Liam's house. One was to pick up a pizza for one of the teachers from JPDS, who is home on bedrest. She is going to have twins soon and her doctors told her to stay in bed. When we got to 2Amys, which is next to Cactus, we ran into my friend Matt Paul and his wife and their son Jake. Matt has been coming over to the house every week or so to sit and talk. His son Julien died in March. Julien had a transplant just like you. It was nice to see Matt's family out. They live not too far from Cactus. After we visited for a little bit we went and dropped off the pizza. G'veret Epstein was there. Finally, we got to Liam's house and he brought R2 in to show his nanny.
With all of those errands taken care of, Mom and I motored over to Adas Israel for the evening's main event. There was a Engagement Party for Rabbi Winnaker and Doctor Mendelson. I saw one of the doctor's from the 5th floor at Georgetown who used to take care of you all the time. He is very nice and will be taking over as Chief Resident when Dr. Mendelson moves to New York. Dr. Mendelson introduced us to her parents as "Henry's parents." I liked that. She is one of the great ones. I wonder if the story of them "meeting" at your funeral will be in any of the toasts or whatever is said at the wedding.
It was a pretty Henry emotional day for me yesterday. It all started when I read a story in the newspaper about a 13 year old kid named Mattie Stepanek who died at Children's Hospital. I had seen him on TV a little while ago. He was a poet. He also had a pretty bad disease called Muscular Dystrophy. His motto was "Remember to play after every storm."
That made me think of you and the Hope for Henry Foundation. This is the "vision statement" that Mommy wrote for the Foundation.
The Hope for Henry Foundation (“HFHF”) was established in 2003 to create a legacy for Henry Strongin Goldberg, who died at the age of seven from Fanconi anemia, a rare, fatal genetic disease. During his short life, he taught his family, friends, doctors, and all who came in contact with him how to live well and laugh hard – even as he battled a terrible disease. Henry embraced each opportunity for living completely and reminded the rest of us to do so. His sparkly eyes, mischievous grin and infectious smile taught us the importance of maintaining normalcy within the family unit in a life fraught with illness and uncertainty. He had ice cream for dinner and transitioned from the hospital to running a lemonade stand in a matter of minutes. He did all these things because at that moment in time he could – and because he knew enough to go when the going was good. HFHF will continue Henry’s magical way of making each day matter.
I never knew that so many little kids die. I am really not feeling up to playing or lemonade stands right now, but I will get it together.
I love you.