Last night Mom and I went to a small party to celebrate our friend MB's 5th birthday. As you can guess, she isn't really 5 years old. It has been 5 years since her transplant. And she is doing great. Her husband and our friend Hugh arranged it. He bought all of these birthday cards for 5 year old kids which was very cute.

I see MB a lot, but last night I asked her what life is like knowing that she almost died and that it is a bit of a miracle that she is alive. She told me that sometimes it is overwhelming. She also told me that there are times that she worries she may get really sick again. I cannot imagine what it is like to walk around with all that stuff peaking through every now and then. It must be a bit like how we've incorporated into our everyday lives the grief of you dying.

I was honored to be there last night for that incredibly special occasion. I also thought to myself going in that the night was about MB and I shouldn't "bring you up," even though of course the whole transplant thing makes me think of you and wish we could be having the same kind of celebration next month for your 8th anniversary. I didn't say the word "Henry" until very late near the end of the party when I was sitting talking to Hugh and MB. It was only because I have this need to talk about you and because I was reporting back on something that happened during the dinner.

A woman came in to the dinner late and sat down next to me. She explained to me that she and her husband were late in getting there because they were attending their daughter's dance recital at Walt Whitman High School.

And you know the one and only time I have been to Walt Whitman, the rival of my high school, Winston Churchill, was to drop you off for Bella's dance recital.

That whole day when you went with her family to watch her dance - I think you got dressed up in a jacket and bowtie - and sat there so attentively as she performed - is one of my fondest memories of you. I think Mom has written about that day for her book.

What I didn't mention to Hugh and MB was that I had just worked on this video of you for the garden dedication that was shown just two days earlier. I am glad the movie ends on the video of you going to Bella's house, also dressed up, ready for a date. I have to say that it is pretty adorable and hilarious that you gave Liane the flowers you bought for Bella.



I had wanted to invite Hugh to go to the garden dedication but Mom made me feel that it really wasn't an event for our friends who aren't part of the school - that it was something expressly for the JPDS community. She was right and I understood. But as I explained to her, Hugh is part of an incredibly special (to me, at least) and small group of Ari, Linda, Jake, Uncle Bill, Dr. Gillio, Dr. Wagner, Liane and Bella and a few others (who aren't family) who really, really knew you and really, really love you. The interesting thing about Hugh is that he is part of that group, but he never knew you when you were alive.

Mom and I agreed that the dedication ceremony provided a lot of folks who didn't know you when you were alive (but know of you) a chance to understand how extraordinary you were, and why G'veret Koss and your classmates wanted to create a garden to honor your memory.

I didn't speak to the crowd at the Garden dedication, but if I had I would have thanked your teachers, Mrs. Berliant and Mrs. Singer. We've been lucky to have them be teachers for you, Jack and Joe. I did say something to Mrs. Berliant when we went outside to see the Garden. She then told me a little story about you. She said that one time you came back to school after having been out sick or in the hospital for a number of days. You and your classmates were coloring. Someone said they needed a red crayon to complete their drawing. You immediately jumped up and offered them the red crayon you were using. That was you. That was your big red heart.



I don't know why all of the flyers I make with blue writing turn red when I put it on here. That is what happened with the program I made for the dedication ceremony. And though you didn't look all that great, your weren't purple!

Aunt Abby is kindly donating a bench for the garden. Mom and I asked Jane's brother Ted to make a sign for it like the sign he made for the Knob. I showed you that when we visited her and her kids in Cleveland back in April. Your grandparents are donating a birdbath. With all the plants, it is going to be quite something when it is all done.

Here are pictures of the designs for the signs.



I look forward to visiting your garden a lot. I think it will be a peaceful place to rest.

I wanted to show you this video. It is about my friend Hugh, who I worked with for the past couple of years. I've written to you about him before, but I want you to see how lucky I am to know him. As I have said in the past, you would have loved him and he certainly would have loved you.



I am also going to put up here a video about the first guy I ever worked for - George W. Koch. He is an amazing guy too. Both of the videos were made when they left the jobs they had for a long time.

Mr. Koch's daughter and Hugh's wife were both very sick. I learned a lot from these two men.

I haven't written you for a long time. I just keep talking to you in my head and writing these notes on scraps of paper that I have all over the place.

I finally decided it was time to get back to it. Here goes.

We went to St. Michaels this weekend for Memorial Day. It was Papa Sy's 77th birthday.



Andrew and Tracy and your cousins were there. Our friends Hugh and Mary Beth and their family rented a house nearby and spent a lot of time with us. Nice.

We did the usual stuff. Rode bikes, played baseball, saw a lot of animals, went kayaking (just me -- no-one ever wants to go with me -- I am officially "Chopped Liver"), put boats in the water and stuffed ourselves silly.

This snake was on the driveway when we came home from riding our bikes into town. He was "sunning" himself. Joe and Sam and I watched him until he slithered away.



This is a bird that Joe and I found in the batting cage at the local St. Michael's high school. We couldn't hit 'cause we didn't want to hit the bird.



The bird wasn't moving. He didn't seem like he could or that he wanted to fly. I opened up the netting to let him out and he didn't budge. It was then that I realized that the bird was staying inside the batting cage for protection.

I told Nana about the bird and she said she had a friend who "rescues" birds. I went back later on to put the bird in a box to bring to Nana's friend and the bird had died. When Joe was going to bed that night I asked him what the highlight of the day had been. He said, "the bird." I didn't have the heart to tell him what had happened.



This is a really blurry picture of the Vice President's helicopter over Papa Sy's house. I recognized the whirr of the rotors from home. His helicopter is the only thing that can fly over our house in DC and the house in St. Michaels.

The Vice President gave a talk to the soldiers graduating West Point in the morning and by the afternoon he was in St. Michaels. Mom said that he lands at the Inn at Perry Cabin and then drives up to his house. I still want to get the ride from our street in Washington to here in the helicopter. No traffic!



Uncle Andrew and I helped Papa Sy put the Tashmoo in the water. The battery was dead so I had to paddle it to the dock. We got Rulen the Waves in halfway. It is a great adventure helping Papa Sy with all of these boats. We needed a higher tide to carry the sailboat off the trailer. I felt bad leaving Papa Sy without having gotten that boat all the way in.



The pool was freezing but that didn't stop your brothers and your cousins. I was in the Broad Creek a bit and that was fine. A lot of muck and ooze but no jelly fish, so I was happy. Joe looks pretty happy here.



Tonight is Michael's birthday. He is 13. A real teenager or a Jewish man, take your pick. His other grandparents, Arlene and Harvey, are having a pool party at their house tonight. We'll be seeing everyone all over again.

Some of the notes I am keeping are just things that I want to tell you about your brothers. Here goes:





-Every morning I find an entire playground's worth of wood chips in Joe's sneakers. For the life of me I don't know how he walks around like that all day and doesn't seem to notice or complain.

-Jack did incredibly well on his tests in school. He is really smart. I am proud of him. He is way smarter than me. Yesterday he started telling me that he thinks about what happens in different dimensions. I don't even know what other dimensions there are. He explained to me that there are other universes and he thinks about what those other universes are like.



-Joe has decorated his room in pictures of athletes that he has cut out of magazines and books.

-Your brothers, both of 'em, won't wear jeans.

-Joe has the bad habit of admiring his hits in baseball. Mom explains that he is the only player who turns triples into singles because he stands at the plate after he hits the ball to watch how far it goes. He reminds me a bit of Manny Ramirez of the Red Sox.



-Jack is a big fan of comedy. He listens to Steve Martin, Bill Cosby and Monty Python.



-Joe isn't big on learning to swim or ride a bike. This frustrates me a lot but I know it is only a matter of time. Patience. He can't go through life not knowing how to ride a bike, right?

-Both guys and Mom became fans of this show called American Idol. Joe was crushed when his favorite, a guy named Blake, didn't win.

-Jack watches the Simpsons... maybe too much. The Simpsons Movie is coming out soon.



-Joe watches SportsCenter all the time. Our routine is that he comes down for breakfast and we watch the highlights together. He always asks me "Who won," and I try to teach him to read the scores and learn for himself.

-Jack had a ceremony at school where he and his classmates got their own Chumashim. What was interesting for me is that when the whole class was singing I could hear Jack's voice separate from everyone else. I guess that is what being a parent is.



-Joe is obsessed with jigsaw puzzles. He went from ones with a few pieces, to 100 pieces to 200 pieces and I think he is working on a 500 piece one. Mom helps him out, but he is good on his own.

-Jack likes the Red Sox and Joe is a Yankees fan (I am rooting for the Nats and wish they would too)

So I guess what I want to report to you Big Brother, is that your two younger brothers are doing great. Jack needs to be a little nicer to Joe but otherwise, they're cool.

Aside from Mom's trip to China... here are some pictures from that...













...there is other big news that I didn't report. First, Zhenny left us. She wasn't working enough hours, so she needed to go to a family who needed her more often. You were the one who told me to hire Zhenny. I still remember calling her from Minnesota to tell her that we were coming home without you. She had only been working with us for a few weeks at that point. That was hard. We are going to miss her - Joe most of all. They have an incredibly close bond and Joe is so tight with her husband Peter and her son Jeff. Hopefully, Zhenny can come over to babysit from time to time.

The other really, really big news is that Papa Teddy is getting married to his friend Jeri. That is happening in June. I am Best Man. I am really happy for him.

Papa Teddy and Jeri just went to Italy for a visit. Here are some pictures of their trip.







Aunt Abby, Uncle Andy, Cousin Michael, Rachel, Joshua and little Noah are heading to Italy next month. Bill and Cristina went to Italy this weekend for a few days themselves. Seems like the place to be. I told Mom that I'd like to go to Israel after we go to Spain next summer with everyone for the 10th Anniversary of Bill and Cristina's wedding. You and Grandma are the ones who made the original trip who won't be there for the reunion.

 

That's a picture of you and me on a boat from that trip.

Hey, we had 3 Israeli girls stay at our house this weekend. They are going into the army soon and before they start their service they travel to the United States for a while. I'm glad we were able to host them. They said to visit when we go to Israel. Maybe we will.

This weekend was supposed to be our annual ski weekend with the Paneros. But on Saturday morning before we left Joe got sick and threw up. I really didn't want to leave him, but Jack was itching to ski and to spend time with his buddy Liam. So Mom and I agreed that I would take Jack and she would stay home with Joe.

Hugh couldn't make it this weekend either 'cause he had to work. Something very big happened. Hugh's company, where I used to work, merged with the other satellite radio company. But MB, Sophia, Sophia's friend and Liam all made it out to the ski place.

It snowed a lot and was really cold. Over the whole time we were there it barely reached 20 degrees out. The mountain was at a beautiful place called Deep Creek Lake in Western Maryland. Before you were born I went there with a lot of people for Cousin Ron's birthday. That time we all waterskied on the lake. This time we watched people snowmobiling and ice fishing. I don't totally understand ice fishing. I think it is more about sitting alone than it is about catching fish. But that is just a guess.



Jack and Liam took snowboarding lessons. Those two are incredibly tough because it was super-freezing, the wind was blowing and the snow was falling. Jack wasn't totally in love with snowboarding and wanted to get back to skiing.



Today Liam went snowboarding and MB went cross-country skiing. I got to ski with Jack, who is good and definitely enjoyed it more than snowboarding.

It was sad to leave with the weather becoming so nice. The sun finally broke through.





It would have been a lot better if both families were at full-strength, but it was fun anyway and nice to spend time with Jack. We had a good time on the drive home rockin' out to Led Zeppelin, groovin' to the Sugarhill Gang and laughin' along to Bill Cosby.

Jack spends a lot of time watching and reading and listening to funny things. I think he is a lot like me. He loves the Simpsons on TV and reads the comics every morning. It is good that he spends so much time with things that make him smile and laugh. He is always telling me about something funny he read in Calvin and Hobbes, or repeating a joke he heard.

Right now he is devouring a Peanuts collection. Just as Charlie Brown says, "Rats," Jack says "Snap." That is his way of saying "darn it."



They have this neat thing at the ski place. If you are in Fourth Grade, like Jack, you can ski for free all season if you have all A's and B's on your report card. We got Jack's report card the day we left. I wish I had brought it with us. He could have skied for free. Who knew.

Joe is feeling better now, and Mom has plans for all of us to go skiing next weekend. Joe went ice skating for his first-time ever a week ago at Cabin John, and had the best time. He was falling on his butt a lot at first, but then got the hang of it and was doing jumps. I know he'll take to skiing the same way. He is fearless and a great athlete.

You want to know something else about Joe. He likes to draw. He is Mr. Baseball but he is also a bit of an artist. I like that about him. He makes great drawings at school and at home. He asks me to name something -- like an elephant -- and he'll draw a picture of it for me. He drew a lot of valentines for Valentine's Day.

Joe is 5. I kinda remember you being at your peak when you were 5 -- before we left for transplant.

I miss you so much big guy. You never got to ski. Never got to ice skate. I've said this before, but I miss all of the first times you never had.

I love you.

I'm starting a new job tomorrow. I left XM, which was really hard. You saw the letter from Hugh. He is a big reason why it was so hard to leave. It feels like a loss, not like losing you, but a loss. I started there right after you died. It helped me get by, to live.

I had a moment last week when I couldn't believe you were dead. I was in the basement doing the laundry and it lasted a nanosecond. It doesn't happen much anymore. Not at all. Though I don't think that means I've "accepted" your death.

A family got in touch with us this weekend about their son who has Fanconi anemia. We haven't gotten back to them yet. Their son's name is Henry.

On Sunday we had a big Hope for Henry event at the AFI Silver Theatre in Silver Spring, which is near where Aunt Tracey and Uncle Andrew live. We showed superhero cartoons and Batman, Superman and Wonderwoman were there. Kenny Curtis, who I worked with at XM, was with us too. He and Jack did a superhero trivia contest and we had a costume parade. I think it was a lot of fun for the parents and the kids.

Since most of the kids came in costume it made me think of the superhero party we had when we all left for Minnesota and your transplant.

People brought superhero toys for us to give to the kids in the hospital. We also raised a lot of money for the Foundation. One of the young people we helped spoke to everyone. She was a patient at Georgetown and now is more than a year out.

It was very emotional.

We will probably do this every year. Mom did a great job on this event. She is amazing.

Our buddy Hugh is who drew this great Hope for Henry superhero. We got a letter from DC Comics because they didn't like that we were using the word "superhero" because they own it. Crazy, huh, especially since everyone bought so many DC Comics action figures for the kids in the hospital.

December 21, 2006

Dear Henry,

I am Hugh. I know your dad has written to you about me.

Today is a sad day for me because your dad is leaving XM to pursue a career involving improving political messaging by knowing how the brain works – there is an oxymoron in there somewhere. He has been at XM for years and has become one of my closest friends, along with your mom.

Your dad showed up in my office during a challenging time in both our lives. Brought together through a game of Jewish geography, we found each other as if by fate. He was gingerly, tiptoeing his way back into the workforce after dedicating his life to your life. And I was just beginning a terrifying journey dealing with Mary Beth’s illness. Our friendship is a true testament that some good can come out the worst situations.

I can tell you honestly, that I would not have survived my journey without him. Whenever a tough medical or personal issue would arise I always said to myself, “What would Allen do?” Each time I went to him (which I did often) he would always give me the most honest and valuable advice in the most caring way.

Your dad is very impressive in so many ways. He is totally dedicated to his family, amazingly creative, compassionate and smart. He adores your mom and will do anything for her and your brothers. I will miss him at XM despite the fact that he would avoid me and never answer his cell phone.

Your dad can do anything -- Learn about the brain, start a non-profit organization dedicated to you, program a Hanukkah Channel, lobby Congress, mingle with celebrities and the security guards, start a website, play video games with Jack, baseball with Joe, ride a motorcycle, tractor, talk politics, root hopelessly for the Redskins and take care of all his friends and family…All at the same time. But I have more muscles and thicker legs and that will never change.

Your dad and I will likely see more of one another when he leaves XM and that will make Mary Beth and me very happy. The Goldberg’s are part of the Panero Posse and visa versa and no change of work address is going to change that.

So Henry, be assured that I will always lookout for your dad no matter where he works.

Love Hugh