Monday, October 30, 2006
I was cleaning the basement yesterday and I came across this letter. That was your last birthday.
I saw a story on the news while we were waiting for our plane in St. Louis about a young guy, Jeff Newbauer, who had cancer and was visiting every ballpark with his dad. He was scheduled to come to see the World Series in St. Louis last Wednesday, October 24, but got too sick to make it. He died on your birthday, October 25. He'll be buried today.
The Cardinals ended up winning the World Series. On Friday night I snuck upstairs at Aunt Tracy's birthday and watched the final game. The Tigers lost but the people up there do have the University of Michigan to cheer for now. I am very excited for the game next week.
On Saturday night we all went to Cousin Rachel's birthday dinner. Jack and Joe ended up spending the night with Michael and Joshua.
Let me tell you a little story about your Cousin Michael. Michael, Rachel and Joshua went to the doctor the other day for their annual checkup. Michael and Rachel were clear to get their flu "shot" in a nasal spray, but because of his asthma, Joshua had to get his in a shot with a needle.
Michael didn't want Joshua to be scared so he said he took the shot with the needle. That says a lot about Michael. With Michael's help, Josh was very brave and had no problem with his shot. They are all such good kids.
Yesterday we went to Joe's last baseball game of the year.
It was also the 31st Marine Corps Marathon. They run through Georgetown. Uncle Andy went down to watch a friend of his run. It is marathon season. Richard just ran the Baltimore Marathon and is thinking about running in the London Marathon. We had your heart surgery in Boston when they were running the Boston Marathon. That one is in the spring, though. I get kinda bored running though I like the idea of the challenge.
Mom and I were talking about how we went to watch Bill run in the Marine Corps Marathon the morning after I asked her to marry me. The marathon was October 25, 1992, so I asked Mom on October 24. It would have been neat had we got engaged three years to the day before you were born. Close enough.
Bill gave you his medal that he got from a later Marine Corps Marathon that he ran. You really liked it. It is in my top drawer with your teeth and some other stuff. You know he also got a medal for being brave in war. Maybe we need to make Hope for Henry medals for kids in the hospital.
Friday, October 27, 2006
You will not believe where Jack, Joe and I were last night.
The World Series!
We flew to St. Louis to catch Game 4 of the series between the Tigers and the Cardinals. They cancelled the game the night before, and everyone - especially us - were worried that they might have to postpone again because of blurriness, I mean rain.
The last time we went to Busch Stadium it was old Busch Stadium and the game was rained out. I was hoping we'd have better luck this time around.
The new stadium was really nice and the place was buzzing. There was so much excitement. Everyone should feel a part of that at some point in there lives. I remember a few Redskins games and Maryland basketball games that had that kind of energy.
We had good seats that I got through work. Check out the mohawk on this guy sitting in front of us.
I liked the sign. While I didn't have any beers (a mistake 'cause that is what St. Louis and the stadium were built on and known for), I did have the most amazing hot dog. It was Best Kosher and smothered in fried onions. Yum. I can only pray that they have them at the new stadium in Washington.
Being with Jack and Joe at something like this was "priceless." Even though Mom thought it was great father/son bonding, I still like it when we do stuff all as a family.
In addition to mohawk-guy, there was a teeny baby sitting right in front of us with her Mom and Dad. She was great. She never cried or made a peep. She just smiled.
Joe had his usual cotton candy and cracker jacks. Joe is very good at singing "Take Me Out to the Ballgame." We sang that on the way over to the stadium.
We went to the game with Hannah. Aunt Jen went separately with a friend. Late in the game, Hannah, Jack, Joe and I moved down to sit with them on the first base line.
Jack took these pictures from where we were originally sitting. Scott Rolen was born the same day as Mom. I wonder why they forgot to mention that important statistic on the Jumbotron.
You and Pedro Martinez share the same birthday. I am glad we could be with Hannah, Jen and Dan so close to your birthday. Tonight we have a party for Aunt Tracy's birthday. Tomorrow we are going to a birthday dinner for Cousin Rachel. It almost slipped my mind that you guys were born 3 days apart.
The best part -- the Cardinals won 5-4! It was a great game. We had so much fun no-one noticed how late it got by the time it all ended.
We got home around 2 am our time.
Jack wanted to stay with Hannah through the weekend, but Joe wanted to come straight home. He was missing Mom so much. Even though he was having a great time, during the second or third inning he asked me when we were going home. I told Jack that the two of us would come back for a long weekend in St. Louis sometime soon. And we will.
Jack's shirt says "Cardinals" in Hebrew. I think when you were a little guy you had one that said "Michigan" in Hebrew.
Even though Mom stayed behind on this trip, we will all be going together to Ann Arbor next weekend for the University of Michigan football game. They are the second best team in the country.
Mom has a big trip of her own coming up soon. She and Suzy are going to China to see Karen. I bet they would never have guessed when they were at school in Michigan that one day they'd all be hanging out in Shanghai together.
Thursday, October 26, 2006
You busted into our lives 11 years ago today.
After you were born they swept you away to the NICU and Mom wasn't able to visit you. She was recovering from surgery and needed to stay in bed. I took video of you and brought it back for her to see.
What really bums me out is that I hadn't used the camera before and ended up taping over the earliest video that I took of you. You had a plastic bubble over your head. You looked like a little spaceman. Very cute.
Mom finally got to hold you. She held you as tight as she could pretty much right up until you died. That time you were in the PICU.
Today was crazy and I am tired. I'll write more about it tomorrow. We went to the cemetery, saw all your friends and spent time with Nana. A lot of people called to say they were thinking of you and us. It was all about you, my man.
Maybe you felt my kiss on the cold brass of your headstone. Maybe you saw us all at Cactus Cantina. Maybe you can hear what I am saying to you here.
I love you I love you I love you.
Tuesday, October 24, 2006
Today I went up to Philadelphia for the morning to go on a bike ride with a special guy named Henry. Just like you Henry was born sick. His mom told me that they've almost lost him 3 times. His sister gets very scared anytime he needs to go to the doctor. He is doing kinda okay right now and is in middle school.
It was chilly!
I got to ride with Henry, who is standing next to me; his mom; Reggie Brown, who is in the middle and a wide receiver for the Philadelphia Eagles; and Bob Rinaldi, who is a good friend of the Hope for Henry Foundation and a friend to Mom and me. Bob is the one who made the bike ride happen. He is the kind of guy who makes good things happen.
Reggie had a really nice touchdown catch this past Sunday. I told him that even as a Redskins fan I could appreciate how great a catch it was.
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.
This video shows Joe as a little fella sitting in his stroller at St. Michaels watching you take some cuts with Mom pitching. That is followed by more recent clips of Joe hitting in the same spot in St. Michaels with Nana pitching, and then at one of his baseball games.
Thursday, October 19, 2006
I gotta work on improving the quality of the video on Henry TV. I'll crack that nut soon enough. Hey, yesterday was one of Joe's last baseball games. I took video of him getting his two hits. I cannot believe that he is older than you were in the video I put up yesterday. The drugs made you look like you were eight even though you were only four and a half. But you didn't just look older -- you acted older.
When we got home I was looking back through videos of you. I watched one from St. Michaels that showed Mom pitching to you. Watching from his stroller was none other than Future Hall of Famer Joe Goldberg. So I can only assume that he learned his great hitting form from watching you and later, Jack.
I was worried that there are very few pictures of you and Joe together, but now that I know there is video I feel much better. He'll have that to remember the two of you by. I'll try and post that video soon.
Jack is getting really good at the Internet. I wonder how long it will be before his curiosity and his surfing skills bring him here. I wonder if he finds it whether he'll tell me. This whole thing is as much for him as it is for me.
Jack uses this thing on the computer called Google Earth that lets him look at places all over the planet. You look at pictures of the earth taken by satellites up in space. It is supercool. This morning I showed Jack where I used to live in London. Then Joe asked Jack to show him the White House because Joe saw it on a field trip his class took downtown yesterday.
I told Joe how you and Jack went inside the White House and met the President. Too bad I don't have video of that.
At some point I'll probably put some kind of map or pictures on here of everywhere that was important to you... Calvert Street, St. Michaels, Minneapolis (I found the video of you with the Vikings cheerleaders!), Hackensack and Baltimore. Maybe I need to retitle this whole thing "Project Henry."
Wednesday, October 18, 2006
I care. I care. We shot this video in the car on the way to Minnesota for transplant. You can see the effects of the steroids in your face. You weren't all puffy like you were after transplant. This is more like you looking like you are going through puberty (I'll explain that later) - which you were.
That bagel is bigger than your head. I wonder if we got it in Cleveland. I think the Anadrol gave you an apetite. You didn't eat much later on.
This is the start of something big for us. I have to look back and see how long ago I threatened to start posting videos of you. I should have been able to do this long ago. Oh well. Now you'll shine even brighter. I need to figure out how to do the fancy editing but I think you hold up pretty well just as is.
I think I am about to get very busy. Yeah. This makes me happy. I love you.
Joe made this. He says it is me. I think he gave me too much hair, but I am happy to take it.
Joe got a haircut yesterday. It is pretty short in front. I looked at him sleeping on the couch (I let him and Jack stay up late or try to stay up late to watch the baseball playoffs) and I saw you.
Monday, October 16, 2006
Two weeks ago someone broke into Dave and Jenny's house nextdoor and stole stuff. Then Mom told me on Friday that someone broke into Aunt Tracy and Uncle Andrew's house and stole things there. The worst thing - the robber stole your cousin Sam's piggbank!
I feel terrible for all of them.
I will call someone and get an alarm put in our house. I don't care if anyone steals our computer or iPods or anything like that. What scares me is if someone comes into our house and takes anything related to you. We have a small safe-like box that is filled up just with pictures and videos of you. The stuff is in that box so if there is ever a fire, those things will survive. I worry that a burglar would think the safe has jewelry or something like that in it. I will find someplace good to hide it just in case.
We also have photos of you in the vault at the bank. I am going to get video of you online. I am going start doing that soon.
Sunday, October 15, 2006
I flew out to Los Angeles for the weekend for work. I think I was there the same exact time last year. I have a piece of paper with notes I took on the trip of things that I want to tell you.
I made a note that I drove by a See's Candy Factory. Remember the See's lollipops we had. The chocolate ones. Yum.
I went to Friday Night Services at a synagogue in a neighborhood in Los Angeles called Westwood. I actually had been there once before, way back in 1978. I stayed there when I was traveling across the country for the summer with a group called USY on Wheels. It was a "teen tour" but I never liked that expression. Not a whole lot seems to have changed at the synagogue in the meantime. It looks very 1978.
I went to services to talk to a man about something we are doing on XM. We are going to have a Chanukkah channel. The next day I went to a big country music concert in a city called Irvine. I lived for a summer right near there. When I finished college I lived with Dave Phillips and Eric Nill in an apartment in a place called Newport Beach. Those guys had one more year left at school. They were at a really good but not well known school called Pomona College.
I worked in a bar for the summer. The bar was owned by a man who went to the University of Maryland. He gave me a job because we went to the same school. That is how the world works sometimes. Dave and Eric cleaned houses, so I was pretty glad that I went to Maryland.
My job with XM is fun because it takes me all over the place and I get to meet a lot of interesting people and do a lot of different things.
Monday, October 09, 2006
I did that 100 mile bike ride again this weekend.
Last year I signed up to do it and even slept overnight at St. Michaels which isn't too far from the ride, but it was raining so hard that I couldn't see how I could do it.
So this year there was no way I wasn't going to miss it again. Steven came down from New York and we did it together. Did you know that Steven's uncle invented GI Joe and Lite Brite. Could there be anything cooler?
The rain wasn't the bad part. It was super windy. I felt like I was getting pushed backward for more than half the ride. I am glad I did it.
It was great being with Steven. He asks a lot of questions about how Mom and I are doing specifically about you. He gets it. I think much of that comes from the fact that he was there with us in Minneapolis the whole time. It was fun when we lived in his apartment. I remember giving you baths in his big old bathtub.
I also like when he tells me things he remembers about you. It was a great way to spend 100 miles on a bike -- even getting pushed backwards.
Riders on the storm
Sea Gull Century cyclists brave the rain as the first fall nor'easter hits the Shore
Sunday, October 8, 2006
By Ben Penserga
SALISBURY -- On an overcast and wet Saturday, Vance Carthy waited in his van in the parking lot of Salisbury University's Maggs Gym.
"I'm not sure I could bike 100 miles," said the Salisbury resident, who was on hand to support his girlfriend participating in SU's 18th annual Sea Gull Century bike for charity event. "Especially with the weather like this? Not me."
Thousands of other Lower Shore residents shared Carthy's sentiments and reconsidered attending several of the area's scheduled outdoor events as fall's first Nor'easter brought wind and heavy rain.
Bad weather has affected the Sea Gull Century for the last two years, and on Saturday, coordinator Amy Waters estimates only about half of the ride's 6,000 registered people choose to come out and ride either the 100-mile or 100-kilometer circuits around Wicomico, Worcester and Somer-set counties.
"All we needed is some sunshine," she said.
Waters said many people who braved the elements chose to do the shorter 100 kilometer route -- the equivalent of about 64 miles -- rather than expose themselves to more bad weather.
"From what we've been hearing, around Assateague Island, it wasn't the rain, but the wind," she said.
Bikers near Assateague Island were not the only people to feel the brunt of the storms, as beach officials from all over the Delmarva Peninsula dealt with higher tides and surf and a few inches of rain dumped in the area, with a coastal flood warning in affect for Fenwick lsland and the Maryland beaches, something officials were already bracing themselves for Friday.
Officials from the National Weather Service said rain should be expected this morning before clearing by the afternoon.
Robert Harlan, a Salisbury resident who intended to go to Ocean City with his wife, Becky, on Saturday, changed his mind after seeing the weather report.
"It's just not good to be outside today," he said. "Some of our friends were down there and around Assateague and they said the wind was just killer."
Still, outdoor events did go on and cyclists did ride Saturday.
Brandon Wilmoth, national manger for Team in Training, a sports training program designed to benefit the Leukemia & Lymphoma Society, sent about 250 riders from 10 states Saturday. The team raised about $800,000 for cancer research.
And as all the participants biked their the final stretch toward Maggs Gym, they were greeted by cheering family and friends.
Among the crowd was Carthy.
"This is what I came out for," he said.
Finishing, some riders looked for their loved ones, while others sought comfort another way.
"Where's the beer?" one rider joked to his partner before making the final turn.