Friday, March 12, 2010

Well this reduced me to tears just now. I read this to Mom on the phone and couldn't finish it.

The Shelsons are the silver lining to FA. The silver lining being the great people who we've met because of you, or who are part of this terrible fraternity.

I cannot be happier for Aaron and his family, but reading this allowed me to think the "what if" you had made it thoughts that I don't think about much any more. The part that killed me was the "walking through the New Hampshire woods, seen whales..." part. I have written to you how I wanted to celebrate you "making it" by walking all or part of the Appalachian Trail with you. Then there is the trip to go whale watching that we had to cancel because you got too sick to go. I actually made reservations for Mom, me, Jack and Joe to go whale watching this summer off Cape Cod. We are going to pick up Jack from camp (he is going for 2 months this summer!) in western Massachusetts and then we'll head east to Provincetown and go out on a boat.

----- Original Message -----
From: Lorne
To: fanconi(at)
Sent: Tuesday, March 09, 2010 8:11 PM
Subject: RE: [fanconi] success

Aaron celebrated his 7th rebirthday this past weekend having had an unrelated transplant in Minneapolis. He was discharged from the hospital on Day 20, readmitted briefly around day 25, discharged on day 28. Around day 100, we were headed home to Toronto.

Since transplant, he has visited Newfoundland, got a Dutch sheepdog (big mistake!), eaten caribou, flown to Iceland, walked through the New Hampshire woods, seen whales, met his donor, eaten blood pudding (if you don't know what it is, you don't want to), climbed a volcano, read all the Harry Potter books, played with a crab in a tidal pool in New Brunswick, ridden Splash Mountain (but didn't enjoy the fast part), hung out with Bill Cosby (they go way back), seen the original geyser (called Geysir), been up close and personal with a moose, had cataract surgery, gone swimming, seen Billy Elliot on Broadway, memorized all the songs in Sweeney Todd (the stage musical and the movie), started riding the subway home from school and much, much, much more.

Aaron is now a grade 11 high school student. He has been in several school drama productions and studies improv. at Second City's training centre here. He plans on becoming an actor. He will be a great one.

I consider that success.


Sunday, February 28, 2010

I'm going through a lot of notes that I've written to you and I'm going to try and get it all online. Here is something I wrote

I was trying to mute how I was feeling by cranking up.

I am guessing that I was sad and the way I dealt with it was turning up the music - probably in the car - so loud that I couldn't think... or feel.

Saturday, February 27, 2010

Saturday, January 02, 2010

Micah died. Everyone is pretty sad. The cemetery was covered in snow. I really don't like the word "predeceased." I remember Ethan's funeral. It is all so wrong. Beth will be okay - but not for a while.

Micah Naftalin, advocate for Soviet Jewry, 76

Micah H. Naftalin, a lifelong Washington, D.C., resident and a leading religious and human rights activist for the past 20 years, died at his home Dec. 23, following a long battle against end-stage renal disease that resulted in cardiac failure. He was 76.

Naftalin served since 1987 as the national director of the Union of Councils for Jews in the former Soviet Union (UCSJ), a human rights organization operating across the former Soviet Union.

At its height during the era of the Soviet Jewry movement in the 1980s, the Union of Councils and its more than 40 local councils in cities across the United States had a total membership in excess of 100,000.

Naftalin "played a very important role in advancing the cause [of Soviet Jewry]," said Mark Levin, executive director of the Washington office of NCSJ-Advocates on Behalf of Jews in Russia, Ukraine, the Baltic States and Eurasia.

Under Naftalin's planning and operational leadership, the monitoring by the Union of Councils became the principal source of primary data on religious discrimination and, especially, anti-Semitic and xenophobic hate crimes and propaganda across the former Soviet Union, with special emphasis on the Russian Federation, Ukraine and Belarus.

"I am deeply saddened by the loss of such a great human rights leader within the Jewish community," Larry Lerner, UCSJ's president said in a statement. "Micah was a friend and colleague whom I admired for many years. He will be greatly missed"

Naftalin was a graduate of Bethesda Chevy Chase High School and attended the University of Maryland for two years before earning a bachelor's degree in music from Brandeis University in 1955. From 1955 to 1957, he served in the U.S. Army, in Korea, as an enlisted man. He received a juris doctor degree from The George Washington School of Law in 1960.

"He was a lifelong Zionist, as were his parents," said Rabbi Emeritus A. Nathan Abramowitz of Tifereth Israel Congregation in the District, where Naftalin was an active member, having served on the board of directors and as vice president. "He was interested in Soviet Jewry because he was interested in all things Jewish and Israeli."

Before joining UCSJ, Naftalin was an aide to former Rep. Carl Elliott (D) of Alabama, with whom he advocated successfully on behalf of the National Defense Education Act supporting vocational education, and with whom he later practiced law. He served as chief counsel and deputy director of the U.S. House of Representives' Select Committee on Government Research and as a senior policy analyst with the National Academy of Sciences. In these roles, he was a prominent opinion leader in the emerging field of science and technology policy analysis.

Eager to serve the Jewish community professionally, according to Abramowitz, in 1982, Naftalin joined chair Elie Weisel on the U.S. Holocaust Memorial Council, where he was appointed deputy director and, later, acting director. He served on the council for five years, during which time the council selected a museum site and began its Campaign to Remember -- a title he suggested.

In pursuit of his passion for religious and human rights, Naftalin established close consultative relationships with the White House, Congress, the State Department and the media. He briefed them regularly on incidents, trends and policy issues related to the status of Jews, anti-Semitism, and the general human rights situation in the former Soviet Union.

He represented the Union of Councils at the Conference on Security and Cooperation in Europe, as well as at other international human rights conventions throughout Europe and North America. In 1990, in Moscow, Naftalin presided over the founding of the Russian-American Bureau of Human Rights, the first Western human rights organization ever registered in the Soviet Union. Since then, Naftalin managed the establishment of six additional human rights and rule of law monitoring bureaus in Tbilisi, Lviv, Minsk, Almaty, Bishkek and Riga.

In 1995, Naftalin represented the United States Government as an official public member of the U.S. delegation to the Conference on Security and Cooperation in Europe as well as at other international human rights conventions throughout Europe and North America.

"For 22 years, Micah devoted his creative and constructive energies to Soviet Jewry," said Abramowitz in remarks he prepared for Naftalin's funeral. But he also recalled other qualities that Naftalin's family members spoke of as he prepared the eulogy: his musicianship, his love of the Redskins and his strength and humor in the face of serious illness.

Recently, Naftalin was appointed vice president of Dialysis Patient Citizens, a nonprofit patient organization dedicated to improving dialysis patents' quality of life by developing awareness of dialysis issues, advocating for dialysis patients, improving the partnership between patients and caregivers and promoting favorable public policy.

He was a former president of the Chevy Chase Elementary School PTA.

Naftalin was predeceased by his son, Ethan, in 2004. He is survived by his wife of 50 years, Beth; his children, Marilyn Weaver and Suzanne Rand, both of Washington, D.C.; and his grandchildren, Noah Weaver, Sydney Weaver and Ellie Rand.

Friday, January 01, 2010

It's New Years Day. We are in St. Michaels. Home.

Mom is on the phone with a reporter from a newspaper in Baltimore who is doing a story about Hope for Henry starting its program at Sinai Hospital. I just slipped her a note that said, "make sure to mention your book." And Mom whispered back that the reporter has already read it. I am glad there are people getting to know you who didn't know you.

Todd Snider, who I love and who is mentioned in Saving Henry, sings a song about his friend Eddy who died on New Years Day 10 years ago. I wonder how he does that night after night without crying. I love that he remembers him that way. John Prine, who I also love, sings a song in every concert called Souvenirs. He wrote that song with his really close friend Steve Goodman, who died of leukemia.


© John Prine & Steve Goodman

All the snow has turned to water
Christmas days have come and gone
Broken toys and faded colors
Are all that's left to linger on
I hate graveyards and old pawn shops
For they always bring me tears
I can't forgive the way they rob me
Of my childhood souvenirs

Memories they can't be bought
They can't be won at carnivals for free
Well it took me years
To get those souvenirs
And I don't know how they slipped away from me

Broken hearts and dirty windows
Make life difficult to see
That's why last night and this mornin'
Always look the same to me

I hate reading old love letters
For they always bring me tears
I can't forgive the way they rob me
Of my sweetheart's souvenirs

I guess it is a bit like Alex Ovechkin kissing the sky after he scores each goal. Maybe this blog is my Souvenirs. 
Saving Henry is Mom's.  I don't how she is going to read from the book at book parties and readings and not cry.

Wednesday, December 30, 2009

I read this today. It is almost New Years and this is as good a resolution as you can find.

"To laugh often and much; To win the respect of intelligent people and the affection of children; To earn the appreciation of honest critics and endure the betrayal of false friends; To appreciate beauty, to find the best in others; To leave the world a bit better, whether by a healthy child, a garden patch, or a redeemed social condition; To know even one life has breathed easier because you have lived. This is to have succeeded."
Ralph Waldo Emerson

There is thing called Facebook and I find that a lot of the stuff I used to write to you I just put on Facebook. That bothers me a little bit. I find I write to you less and what I do write is the sad stuff not the happy updates about Mom, Jack and Joe.

Here is a quote I put on my Facebook page where they give you space to put your favorite quote.
"Outside of a dog, a book is man's best friend. Inside of a dog it's too dark to read."
Groucho Marx

Monday, December 07, 2009

We had the annual Hope for Henry Superhero Celebration last night. It was a huge success. There were a lot of people and we raised a lot of money.

I saw something, though, that made me crazy sad. It was really fast. No-one else probably saw it and if they did it probably didn't register. Simon hugged Ari. That was it. It was so nice, so sweet and made me so sad. Jake was there too. All three of your buddies are still buddies.

The bad week has started. But it didn't start all bad. I had to register your brother for soccer. And I was psyched to do so. Wanna know why? 'Cause you're still in the system.

Sunday, November 08, 2009

The night we left for Ohio to go to Sam's funeral Mom told me about a visit your brothers had with their doctor earlier in the day. It seems that Joe has an irregular heartbeat and his doctor wanted us to visit your cardiologist, Dr. Hougen. I thought we were done with him. I asked mom if she thought that he knew you were dead. He and Dr. Jonas did a great job patching you up for a long life.

While we know it won't be anything - right, it wasn't fun to revisit the wearing of the vest.

We remember when you had to do this. It recorded your heart beat for 24 hours or something like that. You had something, though.

What you didn't have was a 2009 Mark Teixeira World Series jersey. Your lucky little brother scored big when I had to travel to New York for work while the Yankees were in the World Series. My hotel was just around the corner from the Yankees store on Fifth Avenue so I popped over there and got him a jersey. I can't help myself from spoiling those two brothers of yours. Funny thing is when I was on the train up there the conductor went through the car asking if you were a Yankees or Phillies fan. They gave you a t-shirt depending on what team you were supporting.

I think I've said this before to you that I sometimes wonder if your brothers are any relation to me. I come to this question by looking at the laundry. There are never any socks for Jack no matter what the weather. It could be 20 degrees below zero and the middle of winter and I won't be washing any socks because Jack is wearing flip flops.

The other thing that convinces me that your brothers spawned from aliens is that their pants - if you can call them that - are all 100% polyester. Wearing those would be like nails on a chalkboard for me. But when I try to introduce the idea of wearing jeans I am met with icy stares. How dare I suggest something so absurd.

But then looking at my own t-shirts I realized that maybe, just maybe they share my DNA

Todd Snider
Rolling Stones

I was folding the laundry this morning and realized that everything you need to know about your brothers you can learn by reading their t-shirts.

Jimi Hendrix
Sex Pistols

Home Run Baseball
Stoddert Soccer

Wonder what yours would have said.

Wednesday, November 04, 2009

Jack, Mom and I met for the first time with the rabbi to discuss Jack's bar mitzvah. Jack's portion is the story of Joseph and his dreams. We talked about what Jack might talk about at the service. We spent a lot of time going over what happened when Joseph decided to teach his brothers a lesson by threatening to make Benjamin a slave for stealing. I started thinking about Jacob thinking he's lost two sons. I thought about Abraham thinking he was going to lose Isaac. And I thought about you. I said to the rabbi that I thought that these tests were overly harsh. He said that it is an important part of Judaism to teach that life is hard. It was all too much for me. I was getting very emotional and very sad. I was pretty tired because Mom and I had flown in really early in the morning from Los Angeles. I said that maybe Jack could focus on the dream part instead and then I just shut up and let everyone else talk and work through these things.

Monday, October 26, 2009

This was yesterday. Happy 14th Birthday. I said to Mom that you've been dead as long as you were alive, but she said that doesn't really kick in until the anniversary of your death in December.

I took some balloons from Emma's Bat Mitzvah and kept them for our visit out to your grave. If the weather had been cooler I think they would have stayed more blown up. I was really psyched that the pinwheel is still in place. I brought the extra one with us in case I had to replace it, but no worries. The cape we put up in the tree is still there. I am glad they don't take too good care of your plot.

I cleaned your headstone and the bench. I brought supplies with me - Formula 409. I also cleaned off Grandma Phyllis' grave. There is a song I saw last week on iTunes when I was listening to Bob Dylan that was originally done by Blind Lemon Jefferson, See That My Grave is Kept Clean. I was looking for this other song, The Groom Left Standing at the Altar. That song played after a Todd Snider concert that Mom, me, Aunt Tracey and Uncle Andrew went to last week the night after we got back from Samantha McCarthy's funeral.

It was so peaceful at your clean grave that both Mom and me fell asleep while we sat there. I kept reading your name over and over and over again and then closed my eyes. Either it was peaceful or we're bushed. No-one ever told me how tired you get from feeling a lot. I think it must be called emotional exhaustion. It's real.

Hey, you know how I am into coincidences, right. Well check this out. I had told you last year around this time - when I wrote to you about Ari's Bar Mitzvah - that he spoke and it made me think of a poem.

Do Not Stand At My Grave and Weep

Do not stand at my grave and weep
I am not there; I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sun on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry,
I am not there; I did not die.

Mary Frye, 1904-2004

Guess where I saw that poem. Right at the entrance to the cemetery. It was on a bronze plaque. I never saw it before but I spotted it on the way in yesterday. I took a picture of it.

Samantha McCarthy's mom wrote something the other day that also reminded me of the poem. I like that she writes +6. That is both incredibly hard and positive.

Wednesday, October 21, 2009 11:47 PM, EDT

Day +6

The last five days have been a complete whirlwind. We are finally at the lakehouse after five long and busy days. We were surrounded by family and friends since we arrived home on Thursday night and have had a constant stream of visitors delivering food and cleaning up and Dan and I decided last week that we would just lean in and let it happen. It proved to be the best way to deal with everything. We have the most wonderful friends and have been well taken care of.

Friday morning Dan and I woke up at 6:00am and left quietly to have breakfast before anyone woke up. Later that morning we went to the funeral home and worked out all the details. Right away we started to write Sam’s obituary. I knew why we were there but I wasn’t quite ready to start with THAT. Once we got through that we chose a casket. Not another good choice but had to be done. We chose a green casket, Sam’s favorite color. From there we decided to just dig in and go right to the cemetery. Talk about a surreal experience. It was kind of a gray and gloomy day and we drove around searching for the perfect spot. Fortunately there are not many spots for three so there weren’t many choices. We bought space for the three of us and I left there with a strange sense of calm knowing that Sam would feel safer knowing she was not alone and we would join her in time. The location is in the back part of the cemetery and is on the inside of a beautiful hedge row and is very quaint. We left there and went to visit the florist. We chose all pink flowers to go with the green casket. My plan was to make Sam feel right at home. Her bed is green and her room is painted pink and I hoped she would approve. Saturday we did lots of errands and had more visits from friends and family and Sunday we met with Fr. Kavanaugh to plan the funeral mass. We spent most of the time telling him a lot about Sam since he arrived just before we left OLP and he never really got the opportunity to meet her other than in the hospital over the last two months.

Monday morning Dan and I took a drive to the lakehouse to meet some movers that we had already scheduled. The drive was very relaxing and a good way for the two of us to prepare before the craziness of what we were about to do. Dan, they boys and I arrived at the funeral home about an hour prior to the start of the visitation and were pleasantly surprised at how beautiful everything had turned out. So much for, “in lieu of flowers”! The room was full of roses and lilies and I will always have that in my mind when I smell that beautiful scent. It was a beautiful sight in spite of the sadness it held. I know Sam was very happy with the pink and green. We decided to leave the casket open and Sam wore her favorite hat, Kermit t-shirt and green sweatsuit. The boys thought she looked like she was smiling and that made me happy and confident we had made the right choice. Finn and Jack left with friends for most of the evening but Joe wanted to stay and spent the evening hanging with us and the guests. There was a steady stream of visitors from beginning to end. We saw many people we expected and many we hadn’t seen in years. We closed the evening with a lovely prayer service and Jack did his best to make the mood as bearable as could be as he participated in the service repeating all the responses after everyone else!

We left the funeral home after saying our last goodbyes. On our way home we tried to tell the boys how we were coping with the loss of Sam and our ability to “see” Sam in different places when Finn says, “hey, there’s Sam’s Auto Body Shop!” Just like that she was right there in the car with us. Ever since then we have seen Sam everywhere wether its a shooting star, a ladybug, a rainbow in a cloud, a warm breeze on your face or just a song on the radio. She is with us everywhere we go.

Tuesday morning we were up bright and early with the blessing of yet another gorgeous day, Thank you Sam! We arrived at the church and just about 9:56 we gathered at the entrance to the church. As they pulled the casket from the back of the car I fell apart. I thought I was ready until that moment. No parent should ever have to see that. Major tears. We covered the casket with the white cloth and proceeded down the aisle to our pew in front. The service was perfect, the boys, the music, the readings, everything was perfect. The 23rd Psalm has always been a source of comfort for Sam and Fr. K focused on that throughout his homily. He explained that Sam’s faith was strengthened as her body abandoned her and he challenged each of us to strengthen our faith by abandoning something in our lives even for just a week as a way to honor Sam. More tears (MT). We finished the mass with our friend Dave reading a letter that we received from another friend that was just what we think everyone has been trying to say since Sam’s death. I will share that letter with you when I get home tomorrow but I forgot to bring it with me. MT

The night before at the funeral home our friends filled out cards with a message to Sam. Our friends at OLP attached all the cards to pink and green balloons and white for the family. After the mass everyone gathered quietly outside to the sound of the bells as they put Sam back in her car. Once we were ready the boys started the release and let go of their white balloons. There was a brief moment where a bunch of five balloons all together got caught in a tree. Just when we started to worry a gentle breeze lifted the balloons and they floated up into the sky. I think Joe said it best when he said they looked like “floating lollipops”. It truly was a beautiful sight. More tears. I will post pictures as soon as I get them. I hope I never lose that memory. Sam was certainly smiling. As we drove out of the driveway the sixth grade class released yet another set of balloons as Sam rode past. More tears than I thought I ever had.

I am going to apologize now for making everyone wait for Dan and I to make a pit stop just before the start of the graveside service but we “really had to go!” I am sure we weren’t the only ones!! Just like the smell of the flowers the crunching of the leaves will always bring me back to the walk from the car to that blue tent. It felt like it was all I could hear as we walked over to pay our last respects before leaving Sam for the last time this week. Again, Jack brought laughter amidst the tears when we asked him to say goodbye to Sam. He looked down under the casket to the empty space and shouted, “she’s not in there!!” No, she is NOT in there. Her body may be in there but the important part, her spirit, is with us in our hearts and she is with Jesus safe and sound.

Of course the event turned into a party as we celebrated all that Sam did in her short life. We had everyone at our house and the party went late into the night. That might be why I am a little sluggish today or the fact that once I woke up at 5:30 and couldn’t go back to sleep. Whatever it is I miss Sam terribly. There is a giant hole wherever we go. I feel a little guilty for being able to do things we couldn’t before and I am sad that we don’t have her with us. Either way we are sad and I don’t see any end in sight. I am sure we have to keep going and I am going to do that but its really hard. In spite of it all we have had some laughs today... Joe annoying Finn and “running from the law”... just to name a couple!! (We weren’t really running from the law)

For now we are focusing on being together and as before we move forward into unchartered territory. The boys seem to be coping fairly well but its been barely a week. I am going to wrap this up. I have a lot to say that I have already learned from Sam but looking back this is already really long. Bear with me, this is my only way of keeping a record of everything and its something I need to do for us and the boys. I will share more later but for now I am off to bed.

All our love,

Nik Dan Finn Joe and Jack

There was a story in the newspaper yesterday about Sam and her parents and her brothers. I sent Sam's mom and dad some books that I read after you died. If they feel like it they can read them. Maybe they won't want to. Everyone does this thing their own way. There's no real guidebook. You gotta figure it out for yourself.

A young girl's death helps the living puncture stereotypes

Sunday, October 25, 2009 3:37 AM
By Joe Hallett

So beautiful, so peaceful in her casket, Samantha McCarthy breathed hope into the funeral parlor without breathing and spoke optimistically without speaking.

She had, through the words of her mother, Nikki, come to life while dying, instructing thousands how to be courageous while facing the unbearable -- death at age 11.

Although I have known Samantha's father, Dan McCarthy, for years, I was not aware his daughter was dying until several months ago. He never mentioned it in brief conversations during our chance meetings, never giving cause to perceive him as anyone but Dan the lobbyist.

Sifting through the sadness as I knelt beside Samantha's casket Monday night, I understood the falseness of such superficial relationships.

For years, Dan McCarthy has been the very likable president of The Success Group, a Statehouse lobbying firm with about 35 blue-chip clients.

Lobbyists are easy to dehumanize as behind-the-scenes dealmakers who have no scruples or consciences. That stereotype, of course, is false. The vast majority of Capitol Square lobbyists are honorable and necessary.

McCarthy is among the best of them. But he is more than that. Being a good lobbyist is what he does. Being a good husband and father is who he is.

That came through profoundly in "Samantha McCarthy's Journal," an online chronicle of Samantha's journey written with touching candor by McCarthy's wife, Nikki. (

She started it on Nov. 15, 2005, about a year after Samantha, then 6, was diagnosed with Fanconi anemia, an extremely rare blood defect that leads to bone-marrow failure. Bone-marrow transplantation is the only long-term cure for the disease.

Besieged with inquiries from family members and friends about Samantha's condition, Nikki decided to write the journal to keep everyone apprised. It turned out to be cathartic. "When she feels good, I feel good," Nikki wrote in her first entry. The journal had recorded nearly 63,000 visitors when Samantha died on Oct. 15.

Over four years, Nikki's journal portrayed the emotional highs and lows for a family -- Samantha left behind brothers Finn, 9; Joe, 6; and Jack, 2 -- trying desperately to hang on to their precious daughter and sister after a bone-marrow transplant had failed.

"She looked like an angel," Nikki wrote May 19, 2006, feeling "blessed" that Samantha was well enough to celebrate First Communion with her class. Many of Nikki's postings discussed Samantha's erratic hemoglobin counts, her stays in children's hospitals in Cincinnati and Columbus, and the ups and downs of a little girl wanting nothing more than to play with her friends.

On Oct. 11, Nikki's posting about Samantha was ominous: "She is losing her fighting spirit big time. I can't really say I blame her. We've asked so much of her over the last 400+ days. We've asked her to do more than most people in an entire lifetime and she is tired. She is sick and tired."

Four days later, Nikki wrote: "If you have ever gotten a shot or an IV stick, you know the question the nurse always asks: 'Should I count, or should I just do it?'

"Sam's answer was always, 'Just do it.'

"She never wanted a warning, just do it was how she preferred the pain. So it is with great sadness but some relief that I can just do it and say: Sam died tonight.

"We were not ready."

Before Samantha died, her brothers came to the hospital room for a final visit.

"We know she knew they were here when she responded to their kisses on the cheek," Nikki wrote.

At the funeral home, Samantha lay serenely, attended by the hope and optimism that other children with Fanconi anemia will benefit from all that was learned during her courageous fight.

In one of those awkward moments when you never know the right thing to say beyond "I'm sorry," Dan smiled understandingly, nodded toward one of his sons and said to me, "We still have the boys."

A lobbyist is not just a lobbyist.

Death has a way of clarifying the living.

Joe Hallett is senior editor at The Dispatch.

After we visited the cemetery we drove back to town and went out for dinner at your favorite restaurant, Cactus Cantina, with your favorite people, Ari, Jake and Simon.

I still can't imagine what the 14 year old Henry would look like.

Sunday, October 25, 2009

Here are photos of you and Emma. I cannot imagine what you'd look like now. Looking at these I clearly see how Emma became the Emma that I know now. She is a "singular talent." I know no-one like her. She has a maturity, focus and creative expression that I just don't see in other kids her age. She and Jack are incredibly close.

I will ask Uncle Andrew for a copy of what she said. She talked about you a little bit too. I cannot tell you how impressed I was with her yesterday.

Speaking of incredibly close, look at the smiles and hugs you both shared.

I've noticed that no-one uses any of the Henry swollen on steroids photos in their Bar Mitzvah photo slideshows. I may have to reverse that. I don't like thinking that your life stopped 2 years before it actually did.

Here are photos I took at Emma's Bat Mitzvah. They start with shabbat dinner and Nana's and go through the service, the lunch and the party last night.

There is one more family gathering in a half-hour but Mom and I bagged. Your brothers are going with Nana and Papa Sy over to Aunt Tracey and Uncle Andrew's for the brunch. Mom and I are going to hang out and go to the cemetery.

I gave Jack your knife this morning. I crawled up onto his bunk, woke him up and gave it to him. I said to not hurt himself and to remember you. I told Mom I had done it and she was disappointed I hadn't waited to do it together with her. I think I really screwed up. I was trying to keep it low-key and not make it too ceremonious - probably 'cause I was worried about Jack's reaction. I didn't know if it would make him sad (that's why I did it in his bed, I figured he could roll over and go back to sleep) or it wouldn't produce any reaction. It was more like that, he said thanks and that was it. He ended up coming downstairs about ten minutes later. No knife in hand.

If it had been me, I would have spent the next few hours checking it out, trying to carve something, throwing it into the dirt to see if I could make it land straight - but this one is actually too big to do any good throwing really.

But Jack is Jack and away it went somewhere in his room. He has his way of doing things and they continue to be a marvel and a mystery to me. I love that about him.

Saturday, October 24, 2009

Emma's Bat Mitzvah "weekend" started last night with dinner at Nana and Papa Sy's. It was interesting because Nana and Emma's other grandparents talked a lot about how great it is to have lived to see their granddaughter bat mitzvah'ed. I kinda thought that was a given, and then thought about Grandma Phyllis and how she didn't live to see Hannah and now Jack become B'nai Mitzvah. At least she didn't live to see you die.

I am the official photographer as requested by Uncle Andrew. Here are some shots from last night. After looking at these I remembered that I wanted to buy a new flash and a wide angle lens for just this occasion. Oops.

Friday, October 23, 2009

Mom called me earlier. I asked where she was and she said Saks. One day I should tell you the story about how  - when I was a little kid - I was at Saks with Grandma Phyllis, Papa Teddy and Aunt Jen and these guys stole a bunch of fur coats and ran right past us through the parking lot. That was cool. Okay, so Mom was at Saks waiting for Aunt Abby. I had forgotten that on your birthday Mom gets a present from Aunt Abby. A pair of shoes. It might be because Mom came out of her shoes and walked through the freezing cold mud at the cemetery after your funeral. Or maybe it is because just for a moment when Mom puts on the new shoes she forgets how incredibly sad she is.

Jack is another person getting a gift for your birthday. I am giving him your swiss army knife. You probably don't remember this - on account of you were comatose - but I bought you a huge swiss army knife right before you died. This is what I wrote in the blog back then. I notice that I was writing about you and not to you like I started   right after you died.

i went with my dad and jack to get jack some big boy clothes for the funeral. i also bought henry the biggest swiss army knife they make. he always wanted one but laurie knew he was still too young. he doesn't have much of a palm but i put his fingers around it and he is holding it now. also, it is pretty ironic that we took jack to get something to wear when he couldn't care less. henry was the real clotheshorse in the family. he had style.

the clerk at the store asked if we were out having a shopping day. i wish i had the wherewithal to say, "no, we're removing life support from my son today."

we're working on funeral and burial arrangements now. i ran into the manager of the ronald mcdonald house earlier i found that i had to actually say, "my son is going to die today and we are going to be out of here by tomorrow morning.

posted by Allen Goldberg at 10:40 AM

Originally I wanted to give Jack the knife - hey, that sounds just like Mack the Knife which is a great song - when he turned 11 or something. The only problem is I kept thinking he'd hurt himself with it. I think he is definitely old enough now.

I was in Switzerland 3 weeks ago and found a really nice swiss army case for the swiss army knife. Every boy should have a knife. I hope Jack likes it - how could he not - and that he doesn't get too sad. I didn't want to give it to him on his birthday 'cause I didn't want to risk getting him sad right around his Bar Mitzvah.

We (me, Jack and Mom) are going to talk to the Rabbi next week about the best way to "include" you in the Bar Mitzvah. We don't want to get people too sad, especially me, or take away from Jack's moment. I am sure there is a good way to do it. I am working on a video for the party and will include some footage and photos of the two of you. I have so much. I also plan to do a book for Jack with photos of the two of you together.

It is Emma's Bat Mitzvah this weekend. That's gonna be a little tough perhaps too. Mom and I are skipping out on the family brunch on Sunday so we can go spend some time at the cemetery.

I am still reeling from Samantha McCarthy's funeral on Tuesday. Mom and I drove to Columbus after work on Monday and got there at two o'clock in the morning. We went to the funeral when we got up and then visited with Nikki and Dan at their home with their family and friends. We got back to DC late Tuesday night. I have a lot to say about that and will this weekend. You could say I have been saving up. What better time to spill it all than your birthday on Sunday.

Here is something I read today which made me feel regret that I didn't think to do this when you died. But who's thinking at that point.

Her mom just asked us to cut some of her hair,” I said. My voice sounded ripped apart, like a shirt collar that has been torn right before a funeral, as a traditional sign of mourning.
Carefully lifting the sheet, Ann cut off some of Tal’s long, earthy-blond curls.
“Is that enough?” I asked.
“It will never be enough,” Ann whispered.
All I have are those teeth of yours that got pulled during one operation or another. Hair would be so much better than teeth which are floating around in some solution in a specimen jar. I know Mom has some of your hair from your first haircut.

Wednesday, September 09, 2009

I was thinking about you on my way home from work today. I drive 45 minutes through beautiful rolling hills in Virginia. I never had a commute in my life and now I drive 50 miles a day. While I watch the beautiful horses run through pasture, I listen to books on my iPod. Today I was listening to a book about Abraham Lincoln called Team of Rivals. The book is by a woman named Doris Kearns Goodwin. What I liked about what I listened to tonight was her description of one of the men who was trying to be President at the same time as Lincoln. When she talked about this man's family she included his son who died when he was 4 months old. That kid was not forgotten or overlooked. Nice.

Mom and I went to see a TV show be taped near our house last week. Doris Kearns Goodwin was there. She and the other people on the show talked about Senator Ted Kennedy who just died.

I reminded Mom how we went bowling one afternoon and Senator Kennedy was in the lane next to us with his family. I wonder if you and Jack were with us. It was a long time ago.

p.s. I talked to Uncle Stinky (Bill) who said it was him and me bowling with the Kennedy's.

I haven't really written to you since I started my new job. Everyone who works there got an email today about the company picnic. It is at Turkey Run. The last (and only) time I was there was with you and Jack. You were the stars of the picnic. I got sad when I read the email.

It is scheduled for September 26. Joe and I are going to a convention for Washington Caps fans that morning and then we'll come grab Mom and Jack and head over.