The Fanconi Anemia Research Fund's Family Newsletter came this week. I recall writing somewhere once, maybe a fundraising letter or email, that the most depressing thing was reading the two lists that are printed in each newsletter: "New Families" and "In Loving Memory." Strangely, but nicely, there is no list of new families. There is the list of those who have died since the last newsletter. The class of '95. You are on it.
There also is an article by Dr. Wagner giving an update on the success of transplants in Minnesota. God knows, we all wanted so much for you to be a "success." Mom said something the other night which made so much sense. She said we thought there was no way you could die because you were such an extraordinary kid.
Dr. Wagner is a great doctor and a wise and compassionate man. I once joked to Mommy that if the medicine thing doesn't work out for Dr. Wagner he could always fall back on his poetry. Below is a letter that he wrote to Mom and me right after you died. I asked him if Uncle Bill could read it at the funeral. It is very special.
December 12, 2002
Laurie Strongin and Allen Goldberg
Dear Laurie and Allen,
Hours have gone by now after Henry’s death and sadness must consume you. I can only imagine how difficult it must be, and now, so many will look to you for support. They will need you to help them understand and to deal with this loss. You and Henry have touched so many lives. This is really a tribute to both of you.
Last evening as I was about to leave, there were so many things to say. I couldn’t. I was your doctor; I had an image to keep up—perhaps more for me than for you. After tucking the kids into bed last night and loving them all the more, Lisa and I talked (well, Lisa mostly listened). At the end, she said “you must talk to them…write them a letter”. It is my way to say goodbye. I won’t be there on Friday to help bury Henry so this is my closure to this long journey.
Henry died despite everything. I really thought I could pull this off. I wanted nothing more than to show you that I could do this. Even when Henry got sick, he always rebounded. Henry seemed almost invincible—even to me. But hope disappeared in a blink. This transplant was supposed to work. I feel very bad. In the end, I am consoled by your words that ‘he was given two and half extra years’. You made the most out of every second of his short life.
Yesterday, for the first time, I briefly looked at your website…now a memorial to Henry’s life. I couldn’t believe the moment had really arrived…and that the last entry was yet to be written. What would it say? How would you summarize that final moment? For you, there must have been no greater joy than having Henry by your side. I can’t imagine that you could have done a better job for Henry. You gave him life and you stood by his side every step of the way. You taught him to live and live completely. You gave him space and freedom…he could only know that he was loved. As his parents, you did what you had to do. You pulled every string, made every phone call, and traveled to the ends of the earth.
Henry is gone. You will never see him again. You will never know what he was to become. Oh! How we could have used him as President. While you may sometimes wonder what he might have been, you will never wonder how much he mattered to everyone around him. You will always, always be proud of him. And, you will never lose that pride. But, the genes foretold of this day. We only refused to accept it without a fight. You wouldn’t have done it any other way. Though we failed to change the course of history, Henry’s journey was brilliant.
I will miss him too.
Henry, I cannot explain why but all of us are feeling really bad right now. Mom and Uncle Bill think it might have something to do with it being Passover. Do you remember how Moses instructed the Jews to put blood on their doorposts so they wouldn't be visited by the angel of death. It didn't work for us. We lost our first-born. We lost you.
Jack was sitting alone on the floor of your room tonight looking through his "Henry Memory Box." Mom said when she came in Jack was very, very sad. He is doing incredibly well given the circumstances. He told Mom that he wants to come see you. I think that is a great idea. I had a terrible panic last night when I was getting ready to go to sleep. For some reason I thought really deep and hard about the fact that you are gone for good. The pain in me went so deep that I was scared. I was scared because I knew that I could do nothing to bring you back. I was scared because I didn't know how I could live without you. Joe was asleep and Mommy and Jack were in St. Michaels. It was terrible.
I think Mommy is really sad but is being strong for me and Jack. I will be strong for her when she needs me. Joe takes care of all of us with his smile and his spirit. When he was in the bath this morning I was thinking he is a combination of Jack and you. Joe basically had no room to sit because the tub was filled with your Pokemon and Jack's whales and sharks. He lines up the whales on the edge of the tub the same way you lined up your Pokemon figures. He is lucky to have parts of both of you in him.
After getting very pruney in the bath, Joe and I went out for a walk. We were stopped by a nanny who wanted to tell me how sorry she was that you had died. I didn't know her, but you have so many friends it was hard to keep track. I wish I could tell you her name. Speaking of your friends, Mom and Jack went to Georgetown to resupply the Band-aids. Everyone was there and Mom said it was very emotional. Mom also told me that "Henry's Toolbox" of Band-aids is a big hit with the other kids. It makes them feel good.
A young couple bought the house next door. Joe and I spoke to them this morning. They asked about Joe's brothers and I told them about you and Jack. When they asked me how Mom and I are doing, I explained that we are very sad, maybe even more sad now than ever. I think that what is happening is similar to what happened to me after my knee surgery. I was in a lot of pain afterwards but after a while in bed I felt better and thought it was time to get up and get moving again. The only problem was I really wasn't all better and when I tried to move around I realized that it was too early and that I needed to heal a little more. I think sometimes your mind is ready to get moving again but your body, or in this case, your emotions really aren't at full strength.
Two pieces of news about the house. First, we got rid of the "Whomping Willow" in the backyard. It is hard to cut down such a big tree, but that thing had the nastiest prickers. You'll be glad to know it is gone. I don't know why it took so long. The second important update is that we have cable again. It is a different company so we have to learn new channel numbers for our favorites, like Nickelodeon and Discovery. You'd be pysched, there is a new channel that is called "Toon Disney." They have a commercial for a CD of songs sung by Disney movie princesses, like Ariel, Belle and Mulan. I get a little teary when I see it. I know how much you loved those songs. We loved them together.
Oh yeah, another musical note. Mom, Jack, Joe and I were in the car tonight listening to XM Kids and Schoolhouse Rock's "No More Kings" came on. I began to cry and turned my face to the window so no-one would see. That happened to me twice on the train back from New York. I know that this is just a stage in the grieving process. I am looking forward to the time when thoughts of you will make me only smile and laugh.
I LOVE YOU SO MUCH AND MISS YOU MORE THAN I CAN SAY.
p.s. My prediction was off. The azaleas haven't fully blossomed yet. A picture will come soon.