Yesterday was your 5th Deathday. We all went to the cemetery, then to Cactus Cantina and then we wrapped up the day by lighting the Hanukkah candles - it was the last night - and a yarzheit candle for you.



I grabbed two photo albums on the way out the door which was a good thing. We all looked at pictures of you and everyone else while we were at the cemetery and at Cactus. It was a good way to get everyone to really focus on you.

I took a video of a lot of what we did all day but am having some trouble transferring it to the computer. Look for that soon.

I was thinking that we need to have an abbreviation for Hanukkah the way there is Xmas for Christmas. There are so many ways to spell Hanukkah it might be cool to be able to just write "H-kah" or something like that. We'll see if that takes off.

It came a few days early but I did start weeping uncontrollably the other day. Here is the "progression." I had a hard day and I was home alone doing some dishes waiting for Mom and your brothers. On XM's Radio Hanukkah, Rick Recht was playing. I guess my mind went to Minnesota when we used to listen to him and then all of a sudden, standing over the sink, I started to weep with my entire body. It didn't last all that long.

Here is a cool slideshow Mom made for the day. I had wanted to do this, but Mom beat me to it and did a great job.



I get bummed out at these commercials that are playing on TV for a hospital called St. Judes. They raise money for the hospital (a really good thing) by showing celebrities with kids with cancer. They only use kids with no hair. That's what sells, but it bums me out. It is just me.

Hey, I keep wanting to tell you that Mom is on a radio show every week. Here is the link to the shows.

http://www.washfm.com/pages/wafaudio.html

Your mom is destined to be a big star.

I read John Smith's website and it looks like he made it through last night down there in Nashville. That's good. I am really pulling for him to get better.

I just got my own call from Nashville and our Southern trekkers are visiting the XM studio that is in the Country Music Hall of Fame. I miss the people who I worked with in Nashville. They are all the nicest people. I am jealous of Jack. I told them to make sure they see all of the plaques of all of the people enshrined in the Hall. Elvis, Johnny Cash and Ray Charles are all in there; it is cool.

Mom is picking up Jack later today. He is going to be a "UAM." That means he is flying as an "Unaccompanied Minor" without any grownups. I am proud of his independence. I cannot wait to hear all about the trip.

Yesterday we went to Nana and Papa Sy's for a last night of Passover seder. I never heard of that before but Nana explained that it is a tradition for some people. I am excited to stop eating Matzoh. That happens at sundown tonight.

Since you guys were born only 2-days apart, Rachel reminds me how old you'd be now. She is very grown up and beautiful. She sews now. I am sure she is going to be good at whatever she chooses to do. Michael is a great snowboarder and Sam is an amazing skier. All of your cousins are incredible, impressive kids. Watching them grow up is fun.

During the meal last night, I was thinking back to last year when I went up to New York around Passover. I went up to help XM broadcast the Downtown Seder. I hope they keep broadcasting stuff like that and Radio Hanukkah.

I like traditions, but at the same time I'd like to do a more high tech seder. I want to show videos along with the normal Hagaddah stuff.

This is a video I watched right before the first seder last week and I thought it was important, especially when we are so focused on slavery and freedom and justice.



I would have shown that video and this one if we had video added to the seder. There are a lot of people dying right now. It is hard to take especially when we don't know if our soldiers are still fighting for people to be free.

Hey, speaking of high tech, one thing I don't understand is why they don't sell motion sensor controlled faucets and toilets for people's houses. That would save a lot of water. I only see them in airports and stadiums. Maybe one day.

I love you.

'Brave and hopeful and strong' District child loses battle against genetic disease

by Debra Rubin

"Mommy, this is a very bad last night of Chanuka." Those were the last words Henry Strongin Goldberg said before being put on a ventilator. And his last words ever.

Just days later, on Dec. 11, Henry lost his battle with Fanconi anemia, a rare genetic disease, dying from complications of a bone marrow transplant.

You said that 4 years ago last night. That was it. No more. On this day you were deep in a coma. You died 5 days later.

Yesterday, Mom and I were in Philadelphia at a fundraiser for the Hope for Henry Foundation. The fundraiser was in a store called Neiman Marcus in a shopping mall called King of Prussia Mall. I've always thought it was weird that there is a place in Pennsylvania called King of Prussia. Who is this King of Prussia?



While we were there I spoke on the phone with a reporter who was writing a story about the Radio Hanukkah channel that I am working on at XM. The writer asked me what it meant to me personally to get this channel on the air.

I told him that when I was growing up I used to listen to the two hour Jewish radio show that aired on Sunday mornings here in Washington. I said that I felt a certain amount of satisfaction helping XM put on the air an entire channel devoted to Jewish music and culture so people can hear much more than what they normally get on regular radio.

What I didn't say -- but what I feel -- is that I don't want there to be any more bad nights of Hanukkah.




As I work on this thing I cannot help but think about you and that Hanukkah four years ago.

This is something I started writing to you before Thanksgiving but never finished. It has been hard to "post" things, especially pictures, and I have been incredibly busy.

I began this when I was on a train up to New York. I was meeting Jeffrey and David for some JewsRock business. They were going to do a show for XM and this channel, Radio Hanukkah, that I am helping put on the air. Those two guys are smart, interesting and great talkers so I know they will be really good on the radio.

When I was on the train I started to read a book that I had bought. It is actually a play and it is called Rabbit Hole. The play is very popular in New York. I don't know how I learned about it, but I got the play because it is about a mom and dad who lose a son.



I think it is important to read stuff like this. It makes me feel things and think about things. The things are you and you dying and how I am handling it. I think about if I am okay. I think about whether I am doing things right.

The mom and dad in the play aren't handling things very well. The mom seems to want to get rid of all traces of her little boy. She wants to move out of their house. That is so different from me and Mom. The father wants to save everything. There is one scene where the dad goes and watches a video of his son on the TV. There is a note at the beginning of the scene that says the dad should not cry. Funny thing is that I did just that when I read it.

The mom later erases the video - she says by mistake, but the dad thinks it is on purpose. Of course this is why I have put every video of you on DVDs and now on the computer.

The little boy in the play died because he was hit by a car when he was running after his dog. The woman that I hit with the minivan just after you died ran into the street chasing a dog. About a month ago I saw another woman get hit by a car that was driving right in front of me on the way home from work. I saw her and knew she was going to get hit. She just crumpled. I keep seeing it in my mind when I drive on that road.

I never told you about a roommate I had in college whose name was Scott. We lived together for just a semester. When we were in school he was involved in two separate accidents where he hit people with his car and they died. Neither were his fault. It was terrible.

One accident happened when a man walked out from between parked cars and Scott hit him. The guy who died had just come out of the house of his bride-to-be's family. They had been inside planning the wedding.

The second was on a street, Route One, right out in front of school. A car turned around - a U turn - in the middle of the street and Scott ran into it. The driver died. Scott disappeared for a while after that one, and I think he may have quit school for a while too. I remember that he was from outside of Baltimore and he was a really good golfer.

It didn't take long to read Rabbit Hole. I liked the play. I thought the mom and dad should just have another kid and they'd start getting better. Mom and I purposely didn't want to have any more kids because we didn't want anyone in the family who didn't know you. Maybe some people would think that is weird, but it made sense to us.



The man who wrote the play gave some instructions in the back for anyone who was going to direct or be in the play. He said that the actors shouldn't cry or mope around. He said there should be humor. I thought those were smart things to say.

About the same time I read Rabbit Hole, Mommy read a book called My Sister's Keeper. It was about a girl who was dying and was saved by a bone marrow transplant from her sister. The sister was born the way Adam Nash was born and how we were trying to have a brother or sister for you who could save your life.

The mom in the book really didn't care for the baby that was born to save her sister or her older son who was pretty much ignored. Mom said the book and mostly the mom wasn't very realistic. The characters were like cartoon characters, just good or bad and nothing in between. Real life can be very dramatic.



Mom read that book for her book group. Someone picked it and I don't think they had any idea Mom might have a personal connection to the story. I don't know if she has gone to the book group meeting for that book yet.

I know that reading this kind of stuff, doing Hope for Henry work and going to hospitals "keeps the wound open." I don't think we ever want to heal. I know I don't.

Aunt Jen, Uncle Dan, Hannah and Kasha all flew in on Uncle Dan's plane for Thanksgiving. We all went together to Papa Teddy's new house that he shares with Jeri for Thanksgiving dinner. It was very nice. We met Jeri's family.

On Friday morning we went into XM with a bunch of friends including Jake, and we recorded some stuff for the Radio Hanukkah channel. It was a lot of fun. Jake sang a song that he made up. Hopefully we can play it.



We then headed out to St. Michaels for the rest of the weekend. We just missed Aunt Abby and Uncle Andy and all your Cherner cousins. They were at Nana and Papa Sy's for Thanksgiving and then left for their house at the beach. Their house is going to be in a magazine. That should be neat. I will show you pictures whenever that happens. The good news is that Uncle Andrew and Aunt Tracey and Emma and Sam were there.



The weather was absolutely, positively perfect. Yesterday we went to Blackwater Wildlife Refuge, where you, Nana and I went together a few years back, and then today we played baseball and I tried to help Papa Sy and Uncle Andrew fix the end of the dock, which fell in the water in a storm.

At Blackwater we saw a bunch of bald eagles. Do you remember when we were there with Nana and there was a man who let us look through his big lens to see the bald eagle. This time it was a lot easier to see them. We saw a bunch of bald eagles flying high in the sky and also sitting on logs. The bald eagles fly really high while the turkey vultures are a lot lower in the sky.



There are 75 eagles who nest at Blackwater year round. In winter there are supposed to be 150. Maybe we'll go back later in the winter and look for more. I think everyone had a good time. It felt good to suggest something that everyone had fun doing.

We brought a lot of binoculars with us. Nana had a pair that she told us used to belong to her Uncle Sol.



Papa Sy explained to me that Uncle Sol fought in World War I. When he got home from the war he would spend some of his time at the racetrack. He loved horse racing. The binoculars we were using were the same ones he used to watch the horses at the track.



I looked a lot at your picture that hangs in the room were we sleep. It is the room next to the room with the bunk beds. You are wearing your PJs with the stars on them. Joe just got some flannel pajamas from Cousin Joshua. He looks so cute. It kills me.



I didn't look forward to coming back home.