Tuesday, September 30, 2003

This just came from school.

Mom and I went to Cactus Cantina for dinner. It was my first time there since you died. Mom warned me that I might get sad. I didn't. I got the fajitas!

Ouch. That joke was so bad it hurt. I did think back to last fall when you and I went there every single day for lunch. Mom and I put salt on the chips in your memory. I'm glad your favorite restaurant wasn't McDonalds.

Monday, September 29, 2003

Jack lost his first tooth! On Friday, in the car with Mommy, Jack wriggled a loose tooth right out of his mouth. How about them apples. He is truly a big boy now. Jack was very proud of himself and we were very proud, too. He made out really well from the tooth fairy. I asked him if he remembered when you had those 5 or 6 teeth pulled last year and bought both him and you Game Boy Advance players with all of the cash you got. I bet you realized there were multiple tooth fairies who looked out for you.

When Jack pulled out his tooth he was on his way over to Nana and Papa Sy's for dinner before Erev Rosh Hashanah services on Friday night. Michael, Rachel, Joshua, Emma and Sam were all there running around as usual. When we sat down to eat Papa Sy made a toast and said he knew you were there with us. Jack added that he knew you were sitting in the empty chair right next to him and Michael. I know he wished he could show you his tooth. I cried. Mom cried.

After we had a little to eat, Mom and I rode the Vespa down Connecticut Avenue to Adas. Joe and Jack hung out at Nana and Papa Sy's. We had no trouble finding parking. That was cool.

Services were good. We were back in the main sanctuary where we had your funeral. Judah Drelich and his parents sat next to us. I had trouble getting through the Mourner's Kaddish. Jen Klein said that she was thinking back to your funeral when she came to services in the main sanctuary. She said she got sad. It helps to hear people tell us they are sad and they miss you. Here is something from a new book I am reading a book called "The Lord is My Sheperd, Healing Power of the Twenty-Third Psalm," by a Rabbi named Harold Kushner. He and his wife lost their little boy, too. I always thought the Twenty Third Psalm was read for the person who died, but it is for the people left behind.

Should you know someone who has suffered a loss, whether the loss of a loved one, loss of a job, or loss of a relationship, and you hesitate to contact your friend because you feel inadequate to the situation, because you are not sure you have the words to help her, please overcome that hesitation and reach out to your friend. Call her, visit her. You don't have to say anything besides "I'm sorry, I feel bad for you." Humans are nourished by relationships, and your friendship, your going out of your way to show concern, has the power to heal a person's soul."

Hen, it is so weird that to this day people who are incredibly close to us don't know how to talk to us about you or how they feel. I wish they would. It makes Mommy and me feel alone sometimes.

Speaking of Rabbis, have I got a doozy of a story for you. I was at Rosh Hashanah services on Saturday (in the chapel where we had Shabbat sing) and who was sitting there but the one and only Dr. Ali Mendelson. Your favorite resident. Here is an email that she sent to you last Rosh Hashanah.

-----Original Message-----
From: AliMerid@aol.com [mailto:AliMerid@aol.com]
Sent: Tuesday, September 10, 2002 10:26 PM
To: allengoldberg@starpower.net
Subject: Re: L'shana Tovah

Dear Henry,

Thank you so much for the lovely picture and note. You look so handsome on your first day at school! I'm going to print it and put it up on my fridge right now!!

I hope you're doing well, and that g-tube is helping you gain some weight!!

Have a happy and a sweet New Year!
(L'shana tova umetukah!)

Love, Dr. Mendelson

I was a little confused because I had never seen Dr. Mendelson at Adas before. We talked for a bit and she told me a fantastic story. At your funeral she was sitting next to a young man and she asked him how he knew you. He explained that he didn't know you when you were alive. But he had heard so much about this boy named Henry, about how special you were, that he had to come to your funeral to get to know you as best he could, even in death. That young man was Rabbi Jeremy Winaker, and he came to Adas when Rabbi David left. Here's the good part. Dr. Mendelson and Rabbi Winaker started dating not too long after meeting at your funeral. Isn't that amazing. Not only have you saved lives; you have helped people find love.

There is more to tell you about High Holiday services, but it is late and I have to go to bed. I sent out an email to people inviting them to your unveiling. I know I probably missed people, but hopefully everyone who would want to come will make it. The cemetery called today and asked me to come out and check out the headstone. They just got it from the bronze guys. I wonder what that will be like.

From: Allen Goldberg [mailto:allengoldberg@starpower.net]
Sent: Monday, September 29, 2003 11:17 PM
To: 'Friends & Family'
Subject: Please Join Us on Sunday, October 26

On Sunday, October 26, at 10:00 a.m. there will be an "Unveiling" of Henry's headstone at Judean Memorial Gardens, located at 16225 Batchelors Forest Road in Olney, Maryland. We invite you all to join us for this traditional ceremony. Please mark the date.

In addition, on Saturday, October 25 -- what would have been Henry's eighth birthday -- there will be an evening fundraising concert featuring recording artist Cindy Bullens to launch the Hope for Henry Foundation. The Foundation has been created to support programs to improve the lives and nurture the spirits of children and families living with Fanconi anemia and other life-threatening illnesses. The Foundation will continue to spread the magic that Henry brought to the world during his short life. More information on the concert will follow shortly.

Thank you all for your kind thoughts and for your support during the last few years of Henry's illness and the months since his death.

Allen and Laurie and Jack and Joe

I'll write more soon.

Good night love bug.

I went out this morning to go to work and it was cold out. Cold enough to make me want to wear a coat for the first time since the summer. I put Jack in your blue Patagonia coat.

I had a dream on Friday night. You were sitting in the snow somewhere. I took off my coat and put it around you and you were all warm and cozy. It was warm, almost hot, on Saturday when I went out. I wonder how I knew it was going to get so cool so soon. Hmm.

Friday, September 26, 2003

Last night I took home this really cool truck we have here at work. I wanted to surprise Jack with it. I pulled up in front of the house and got Jack to come out and look. He said it was the "neatest thing ever." Mom and Joe came out and we all drove it around to the alley to park.

I planned on taking Jack to school in the XM truck. I knew he would really like that. Jack's reaction to it took me back to when I had a similar experience when I was your and Jack's age. One day my Grandpa Nat, you never knew him, showed up at our house in a Red Cross emergency vehicle with the lights flashing and the siren blaring. He drove that all the way from Brooklyn, New York to our house in Bethesda, Maryland. He was a Red Cross volunteer. I thought that truck was the neatest thing ever.

What didn't register in my brain last night was that Jack has no school today. Tonight is Rosh Hashanah. So at 9 pm last night Jack and I took a ride to drop the truck back at XM. Jack brought along the Michael Jordan Space Jam DVD. He was really excited about the DVD player that dropped down from the ceiling. When we got to my office we sat together in the backseat watching the movie. All that was missing was popcorn. After a while we went in to the building in search of pens. Jack found a nice purple XM pen for Mom and grabbed a gold color one for himself. Jack explained that he chose gold because your favorite colors were silver and gold. When I was a little boy, Pop Pop Teddy would bring home these black ballpoint pens from his work that said "U.S. Government" or something like that on them. I really loved those pens. Not sure why; but I did. I am psyched that pens from dad's office are a big deal for Jack just like they were a real treat for me. You loved pens, too. We have great light up ones. I bet I would have been on the moon if Pop Pop Teddy ever came home with a pen that lit up.

When we made our way to my part of the office Jack checked out two big photos of you that I have sitting on my desk. He said he liked them a lot. There is one of you when your were 3 or 4 years old before the transplant. You are wearing a Batman costume. The other is of you when you were 5 years old. Norman took it at the beach. You are wearing a Batman shirt. In the "before" transplant picture you are smiling and adorable. In the "after" picture you look beat up and intense. Jack looked at the pictures and said, "You know, Henry was very brave." I made sure to point out to Jack the photo of him and Mom that I have on my desk.

Jack talked a lot about you with me last night. That felt good. I wonder why he is more open. I did notice something interesting the other day. Jack and I had special "Jack and Dad" time together. I wanted to ride bikes in Rock Creek Park, but we ended up going to his favorite place, the zoo. When we got there he reached out and grabbed my hand to hold. I realized he did this because he was so happy. I am glad we didn't ride bikes. Lately, he has been really good about saying he loves me and holding hands and all that kind of stuff. I know I don't have much time left before he gets too old for that. I am soaking it all in while I can.

After we finished our XM pen scavanger hunt we went downstairs to the studios. Jack went "on air" on the Absolutely Mindy show on XMKiDs. He shared with Mindy and her listeners some of his whale expertise. Jack told Mindy how he wants to have his own show some day. We got home really late. It was 10:30 p.m. and Jack was zonked. So was I.

So Henry, you see how once again I am DriverMan, the superhero behind the wheel.

Thursday, September 25, 2003

One of my favorite times with you and/or Jack is driving home from school. If, by chance, you feel like talking and sharing what you did in school, then my day is made. The other day I brought Jack home from school for the first time this school year. He told me what he did, what he learned and he made me laugh with some new jokes. This is one I really liked:

Dad, do you know that peanut butter is a bad word?

No, I didn't know that.

Yup, it's got, "Pee" and "Nut" and "Butt."

Wow, I never looked at it that way. That's a good one.

I am glad that Jack is learning such important stuff at school. Jack makes me laugh. You used to have a lot of good jokes, too. I miss you making me laugh. You know that most of the time I cry when I think about you. I bet you wouldn't want that. I am sure that you want us all laughing. Some day. In the meantime, the next few weeks from the High Holidays to your birthday are going to be especially hard. And then comes the first anniversary of your death a week before my birthday and two weeks before Jack's birthday. I don't think I'll ever have a really "happy" birthday ever again.

I miss your smile and those dimples. I hope you are okay. I love you so much.

You got some mail yesterday. It is one month until your birthday. You would be eight years old.

Monday, September 22, 2003

There is a lot of hurricane news to report, and we went to Six Flags yesterday for Mom's company picnic. Here is a photo of Mom and Jack on a ride.

I don't feel so great this morning. I will fill you in on everything later, but I did want you to see this great smile on Mom's face and the water splashed on Jack's back. I love you big guy.

Thursday, September 18, 2003

The hurricane is here. Jack didn't have school today and Mom stayed home. I worked all day and watched the trees dance around outside in the wind. The sky wasn't too dark and the rain didn't seem to be coming down very hard. But finally I realized that almost no-one else was left so I figured it was time to go home. When I walked outside with a friend I was surprised that the rain was really soft. It felt and tasted and smelled like rain at the beach. I could not help but think of how great it would be to sit in bed and listen to the rain on the windows.

When I was driving home through the rain and wind I remembered the last hurricane we had around here. It was named Floyd. I don't think anyone is named Floyd anymore.

Floyd hit the East Coast in 1999, right when we were trying to have a baby to be your brother or sister and your transplant donor.

We wanted so badly to be your heroes. I wanted to be Batman and Superman all rolled up in one. My super power would be saving lives. Mom did the real hard stuff and I got to drive. My super power ended up to be driving. I was "DriverMan." Ta da!

Here is something Mom wrote about Hurricane Floyd.

Hurricane Floyd wreaked havoc throughout the East Coast of the United States in September 1999. From the Carolinas to Boston, homes were destroyed; streets were flooded; electrical outages were rampant; lives were altered; dreams were destroyed. Among the trains and flights cancelled were those Allen and I relied upon to deliver our cells to Mark Hughes in Detroit.

As storm warnings increased and travel cancellations loomed, I urged Allen to take an early train to New York. I packed a bag for him and hurriedly took him to the train bound for New York. Many others had similar ideas and after missing an overbooked train, Allen got on the last train to New York, arriving at 2:00 a.m.

After a few hours of sleep, Allen awoke and headed for the lab at Cornell to pick up the cells and head for LaGuardia. Drenched by pelting rain, Allen arrived at the hospital to learn that LaGuardia was closed for the remainder of the day. Allen called me and I put a crisis plan in action. I booked two different flights out of Newark airport and decided to rent a car, just in case. By the time the cells were ready, Allen dashed out of the hospital, box in hand, and hailed a cab for the airport. At that point, numerous exit points from the city were closed due to hurricane-induced flooding. Allen had to convince the cab driver that it was his obligation to get Allen to the airport despite his refusal to do so. By the time Allen got to Newark, both flights I had booked were cancelled and the airport closed. Rumors were flying about the lack of availability of rental cars, but Allen had his reservation number, headed to the rental car area and within hours was in the car with only a backpack and the cells from 19 preembryos in a styrofoam box and a map denoting the path from Newark, New Jersey to Detroit, Michigan.

On only four hours of sleep, Allen drove the more than 600-mile route through the eye of the storm. He stopped ½ hour outside of Detroit to call the researchers to advise them of his arrival and handed off the package at nearly 2 a.m., more than 10 hours after the original flight would have gotten him there, but an entire day before any flight could have delivered him and the cells. This heroic trip saved the cells from expiring and allowed us to have yet another chance to save Henry’s life.

Allen spent the night in Cleveland on his way back to New York and after a few hours of sleep, drove the remaining 8 hours to Newark where a shocked car rental attendant noted the 1200 miles driven in less than 26 hours. Leaving the kids safe with my mom, I got into my car and headed to Newark where I would pick up Allen and head to New York to await our test results… for the sixth time.

Of course what I did was nothing like the adventure that Amitai's daddy had trying to get their cells to Detroit. There was a blizzard. Planes were not going all the way to Detroit. Some very kind man sat next to Amitai's daddy on their flight from New York to Cleveland, which was as far as the planes could go. He volunteered to drive Amitai's dad and the cells through the snowstorm all the way to Detroit. He did it just because he was nice. He was a hero.

I wish I was sitting in bed with you right now listening to the rain. Joe is in bed with us. He is eating a cookie and getting crumbs on my side. It's okay because it make me think of you. You ALWAYS ate crackers on my side of the bed. Not Mom's side, just mine. I complained then, but I it's fine now.

Wednesday, September 17, 2003

I talked to the cemetery. Your unveiling is set for Sunday, October 26. The day after your birthday. We want everyone to come and visit you. Mom asked how we were going to celebrate or mark your birthday. I don't know. Cry? I know Mom wants to do party bags. I want Mom to do whatever she feels is right. I don't know what is right. I was focusing on the unveiling.

Saturday, September 13, 2003

There is a hurricane coming. It's named Isabel. There was a tropical storm a week or so ago named Henri. I was thinking back to the time when I drove through that hurricane to bring the cells to Detroit.

On Saturday night we went to see Bruce Springsteen again. For the second Saturday night in three weeks the clouds parted and gave us good weather for the concert.

Look who we ran into in the parking lot.

Cousin Catherine!

She and Tim came to the show. We also saw Uncle Andrew and Aunt Tracey. They were sitting in the section one over from us. Helaine and Richard were there. My friend Justine was there, too. Seeing Bruce in New Jersey was fun, but it was very nice to be home and literally surrounded by friends and family. For the first time I felt like a lot of the songs were about death. I never noticed that before. The band played "Bobby Jean" and I cried. I posted the lyrics to that song a couple of months ago right after you died. I told you how it made me think of you because I thought of you as my best friend. In the song, Bruce says that he didn't get to say, "goodbye." I feel I didn't either. It was so hectic the morning that you were intubated. I was keeping back a little so the doctors and nurses could work, and Mommy was right by your side. I don't know what I said to you. I don't know if you spoke to me. I don't know the last thing we ever said to each other. I definitely didn't think there would not be another chance to talk, to tell you I love you, to say goodbye. I said those things to you while you were unconscious that next week but I know you couldn't hear me.

One thing I've learned from death is that I need to tell people how I feel when I feel it. A friend told me the other day that he might move away from Washington. I told him that I would be sad if he left. The only problem was that it took me two or three days to tell him. At Uncle Bill and Cristina's wedding I said in my toast that one of the most important things you need to do when you are married is to tell the other person every day that you love them. I said even though you might show them you love them and feel like you them you still need to tell them you love them. I didn't say this because I thought you might not get another chance to tell them you love them.

One neat thing about Bruce Springsteen is that he writes and sings a lot of songs with the following:

La la la la la la la la la la la la la la la la la la la
Da da da da da da da da da da da da da da da

That is good song writing, seriously. People don't do that enough anymore.

Here is a picture of Joe sitting in a bean bag chair in Mrs. Singer's new classroom. He came with us to visit the new school building.

Doesn't he look relaxed. He is a crazy man lately. He bangs his head on the floor and then says, "hurt." No kidding. Jack used to do that, and Mommy did that when she was a little bitty girl. Joe will grow out of it.

Good morning.

Friday, September 12, 2003

I was giving Joe a bath tonight and I thought back to the major water fights we waged in Minnesota with the 60cc syringes. We went from me demanding the water be kept in the tub to all out warfare soaking everyone and everything. God, those things could shoot water across the bathroom. We got Jack into the fray, too. Those are great memories.

It's raining. I'm going to bed. Goodnight water battle boy.

Thursday, September 11, 2003

Today is nine months since you died. Jack says it feels like it has been years. It is also the anniversary of the day the buildings went down in New York and so many people died there and here in Virginia. I never told you but someone I sat next to in a class in my high school died when the plane hit the Pentagon. I don't want it to be more than a year since you died.

It is cool outside. I was thinking we are moving from Slurpee season to hot chocolate at Starbuck's season. I told David and Jack on the way to school this morning that if we leave a little early we can stop for hot chocolates.

I miss trying to keep you warm. My friend, whose wife had a transplant, is bringing her home. I am scared but happy and hopeful for them. I bought them some strong soap. It felt good to be able to help. I also bought their kids some Purell on a lanyard. I found that when you had to stay home and in isolation last fall.

Your birthday is coming up. Then your death day. Oh man.

I gotta find some happy things to write.

I went with Mom last night to a movie about a dad who loses his son. It was called Seabiscuit. Oh yeah, there was a horse in it, too. I think I told you about the story back in April when I read the book. The woman who wrote it lives in Nicky-Picky's house. Mom and I sat about 2 rows in front of where you and Jack and I sat for E.T. It was the first time that I ever almost walked out of a movie. I knew that the boy was going to die and I had prepared myself for that. At first they didn't show how he died, they just showed his dad's reaction. I whispered to Mom, "Thank god." I knew both she and I would be too sad to see him dying. I thought that it was tastefully done without having to show too much detail. But then they went and showed the dad holding his dead son. That was way too much for me to handle. I saw you and me. I saw Mom holding you after you died. I started to weep. Mom was crying too. I pulled my shirt over my head so I wouldn't bother anyone with the sound of my sobbing. I really wanted to walk out but I sat there. Mom had talked forever about wanting to see the movie. So I ate a whole box of Snow Caps and "toughed" it out. You liked Snow Caps, right? I can't think of a candy you didn't like. Remember the time at Morgan's Pharmacy when we bought the chocolate Twizzlers. I think it sounded better than it tasted.

Seabiscuit wore an "H." It was for "Howard," but let's say it stood for "Henry."

The rest of the movie was good because the actor who played the dad really seemed to capture how sad it feels to lose a son. At one point he looks at some kids playing and you could tell that he was hurting. Later in the movie he just drops his head down and I was thinking, "yes, yes, yes," that is right. He never seemed to "get over it" and that felt reassuring to me. I never want to get over it, get over you. You would have liked the movie. The horse was a scrappy little guy who won because he had a lot of heart. Remember how we loved watching the Black Stallion DVD and the boy and his horse won that big race. It was just like that.

I wonder if there is a book about fathers who lose their kids. Maybe I should write it. Off the top of my head I can think of a lot of famous fathers whose children have died. I'd want to know how they live their lives, how they keep on keepin' on while living with broken hearts.

Earlier in the day yesterday I went to Adas Israel to have them print your name in the Memorial Book for the High Holidays. I bought one of the bronze memorial plaques in the sanctuary for you. Now generations of little kids will run their fingers along the raised letters of your name and the date you died (in Hebrew). They'll play with the little light bulbs they light up (by screwing 'em in) when it is your Yahrzeit, the anniverary of your death. I was on the verge of tears when I was in the office discussing the details. Walking downstairs to the Gan to look around I finally let myself cry thinking of my memories of you there.

When I walked outside I ran into Pamela and she gave me a hug. That was nice. I didn't realize that I was there at the time parents come to pick up their kids from lunch bunch. Aunt Tracey showed up, too. It was good to see her. Then it was back to work. Fighting back my sadness is hard to do during the day at work. I thought that if I was really busy I would be okay. It doesn't work that way.

I love you.

Sunday, September 07, 2003

This is strange. Everyone is thinking about you right now and everyone is sad. Mom, me, Jack, Ari, Simon, Michael. I think it is because the weather got a little cool and it felt like fall. The start of school and change of seasons made us really notice that you are gone. Even though we miss you everyday, it just gets more intense sometimes. I'm kinda miserable. Mom is too. Joe is being a typical 2 year old and demanding a lot of attention and patience. That is making things hard.

We went with Michael to Glover Park Day yesterday. The first one you've ever missed. There was a climbing wall that was really cool. Michael and Jack both made it to the top. The mayor of Washington was there and he congratulated Jack for getting all the way up. That was neat and nice. We went out for ice cream at Max's to top off the day. The weather was perfect. It was made for you.

The day after I wrote you about Jack and the doorknob, Joe went into your room and broke two of Jack's bobblehead dolls. I screwed up. Boy, did I feel terrible for Jack. Lesson: listen to Jack and act quicker.

I don't know when or how I'll get out of this funk. I need to come out there. I don't know what that will do, but I just need to see you.

I can't even describe how I feel I am so sad. Maybe Jack said it best when he said he was "uncomfortable" in the room without you.

I love you. I love you. I love you. I love you. I love you.

Friday, September 05, 2003

This is a photo of you and Jack from the first day of school last year. Here you are one year ago. Stupid steroids. Nice Pokemon (Snorlax) kippah. Grandma bought that for you. You are so beautiful.

Jack couldn't go to sleep last night. He told me his room felt "uncomfortable." I asked if it was because you weren't there and he said yes. I asked if he wanted to sleep in our bed. He also said he wants me to put a doorknob back on the door to your room. I had taken it off because I never wanted you guys locked in. I think the door stuck once and I never ever wanted to be in a situation where I could not get to you if you needed me. I'll put it back on this weekend.

Oh Henry, Henry, Henry. My heart hurts.

Thursday, September 04, 2003

Summer is over. This was summer last year.

This was summer this year. We had fun at the beach and in the mountains.

Mom dropped Jack off yesterday morning for the first day of school. He is now a first grader. It was just one year ago you started the first grade. You had survived almost dying and you started school on time. We made it.

This is you last year. The first day of first grade.

This is an email Mom sent to our friends one year ago today.

-----Original Message-----
From: Laurie Strongin
Sent: Wednesday, September 04, 2002 7:56 PM
To: Friends of Henry
Subject: Update

I don’t even know where to start. Most importantly, Henry was released from Georgetown Hospital on Monday at noon. Within moments of his arrival home, he and Jack insisted that I make good on an offer to take them to Attack of the Clones, so despite my general desire to crawl under the covers and stay there, that’s where we spent Monday late afternoon. Tuesday morning, Allen and I took Henry and Jack to school where they entered 1st grade and kindergarten respectively.

Part of me wants to tell you everything is fine. And in many ways, relatively speaking, it is. We’re all back home together after a 10-day juggling act made possible by the generous help of our parents, siblings and friends. By some miracle, Henry did not sustain any damage to his brain. I must have found him as things were unraveling and thankfully, we arrived at Georgetown’s ER just in time. A longer game of monopoly with Jack, one phone call, checking on Joe first, any one of those things would have resulted in the most horrible loss. Instead, we had a dress rehearsal of the nightmare we’ve been running from for 7 years.

Here is what we have learned. Henry does not have a seizure disorder. His brain works perfectly fine. He doesn’t have high blood pressure either. It is normal 99 % of the time and high the other 1%, but not in any predictable pattern. The doctors seem to believe that a combination of Henry’s medications caused an episode of extremely high blood pressure which caused a convulsion which caused Henry to stop breathing. So we have discontinued two of the drugs and decreased the dosage of two others. And we are the proud owners of a $3000 “hospital grade” blood pressure machine (thank goodness for insurance) so we can check his blood pressure throughout the day and night, just in case.

We cannot thank you enough for your supportive messages, visits and all the good food that fills our refrigerator. We haven’t had cereal for dinner in 10 whole days, perhaps a record since October 25, 1995. L’shana tovah.

Exhausted, worried, lucky and hopeful,

Laurie, Allen, Henry, Jack & Joe