Dear Henry.
Click on this link to be taken to that site.
Thanks for thinking of Henry and being friends to us.
Allen
Sunday, March 02, 2003
I have struggled with making my letter writing to Henry public. I have realized that my grief is less private now, so here goes. Click on this link to read the letters that I write almost daily at
Dear Henry.
Click on this link to be taken to that site.
Thanks for thinking of Henry and being friends to us.
Allen
Dear Henry.
Click on this link to be taken to that site.
Thanks for thinking of Henry and being friends to us.
Allen
Saturday, January 11, 2003
Today marks the completion of first 30 day period of mourning, or Shloshim. Yesterday, Henry's school held a ceremony to mark this milestone and celebrate Henry's life.
Henry's classmates read a list of things they learned from Henry:
Henry taught us how to be best friends.
Henry taught us about nature.
We learned to LOVE super heroes.
We learned to love brothers and sisters.
We learned not to complain.
He taught us how to always be sweet.
Henry taught us all about whales during our ocean life study.
We learned how to be kind to each other.
Henry taught us many short vowel words.
We learned to smile a lot!
We learned to take a good nap when we need one (my favorite).
Henry's best friend, Ari, prepared these words:
Henry was my special friend
who I played with many times.
He taught me many things in life
like how to smile and to be brave.
Henry was my best friend who I
knew for five years.
When Henry passed away I was
very sad but I still remember Henry
and never will forget what a cool
person he was.
A few songs were sung, and my favorite was
Mi Ha'ish
(psalm 134)
Me ha-ish hefafetz chayim, Ohev yamim lirot tov
Who is the one who desires life, loving their days, doing good?
N’tzor l’shoncha marah, guard your tongue from evil
Us’ftecha d’daber mirma, and your lips from speaking falsehood.
Sur marah, v’aseh tov, Depart from evil and do good;
Bakesh shalom v’rodfayhu, Seek peace and pursue it.
When we sing this on the High Holidays I love the melody but always seem to focus on the don't gossip or tell untruths part. It was only yesterday that the beautiful melody and the "Who is the one who desires life, loving their days, doing good?" and "...do good, Seek Peace and pursue it" parts came together for me in the image of Henry.
Many of the rememberances centered on Henry's smile.
and how nice and outgoing he was
For the past few weeks I have left this alone and been writing letters to Henry, sometimes 3 or 4 a day. I went back through them the other day and I think it is okay to copy a few short excerpts from them here. I chopped things up a bit so it might not really flow too well. Most of the letters are spent telling Henry how much I love him and miss him. It is unbelievable how many different ways I can write that.
Tuesday, January 07, 2003
Dear Henry:
Another person at the conference Mommy went to (Laurie was a participant this past week in a conference sponsored by the Johns Hopkins Genetics and Public Policy Center and was on a panel with Leon Kass, the Chairman of the President's Commission on Bioethics) was a rabbi. His name is Rabbi Gerald Wolpe. He told me that he said a mishaberach for you when you were sick. He heard about you when we did the bone marrow donor drives a few years ago. His son is a rabbi too. His name is Rabbi David Wolpe and he writes books. As it happens, Mom bought me one of his books called "Making Loss Matter." It is really interesting and helpful. Here is something he wrote.
The times when we feel utterly defeated are the moments when we have the chance to see farther, to reach down deeper into ourselves, to acquire wisdom. It is the time to begin dreaming wise dreams.
In another part of the book he writes,
Superheroes of children's comic books are projections of the child's imagining the power to change the world.
Monday, January 06, 2003
Dear Henry:
Sorry I haven't written but I have been helping Mom with something she was writing on the computer. She wrote a presentation to make to a bunch of really important people today. She talked about what we did to try to have another baby that had healthy blood to give to you. We want to make sure other families get a chance to do what we did and hopefully it will work for them. It was nice and hard to see our friend Sharon who was here for the same meeting. Sharon came here from Tel Aviv. You probably remember when we saw Sharon in New York with her husband Yavin and their little boy Amitai. He had the same problem with his blood that you had. Sharon -- you say "Shah-rown" the way you say the Hebrew words you learned in school -- had a baby with the help of Mark and Dr. Rosenwaks and her name is Alma. Doctors in Israel gave Amitai some of Alma's blood the same way you got your new blood in Minnesota from Beverly, your wonderful donor. It looks like Amitai is going to be okay and not have any of the problems you had. When Sharon spoke today to the doctors, she said that Henry Strongin Goldberg saved Amitai's life. You did. That is the best thing that any person can do. Saving someone's life and loving people are the greatest things we can ever do and you did both. I am proud of you.
We will go visit Sharon and her family in Israel some time. I am sorry that you never saw Jerusalem. It is so beautiful. Yavin and Sharon planted a small grove of trees on a hill overlooking Jerusalem in your honor.
I want to show you an email that Mom and I got from one of the teachers who helped in Aunt Tracey's class.
Dear Laurie and Allen.
Dec.31, 2002
My name is Elizabeth Aloni, teacher at Gan Ha Yeled at Adas Israel (the
Chicks class). Last year, in a shabbat class celebration Henry came
over as a special guest for Sam Strongin's. That was a very special day for all
of us, the little ones were observing all Henry's motions and inputs.
Anyway G-d bless his memory. What I want to tell you is that on that day, when
we passed the Tzedakah box to collect pennies for charity, Henry said
"this is very important, we should give this money to the poor children in
Africa or Afganistan...."
That was very sweet of you. You always thought of others (starting with me, Mom, Jack and Joe) and that was really nice and really grown up of you.
Saturday, January 04, 2003
Dear Henry:
Sometimes when I read or type things said by someone else I can hear the other person's voice. So I am going to give it a try now with us. I pray it works.
Goodnight Henry. I love you all the way to Uranus and back.
Very funny. Goodnight Dad. I love your butt, too.
You know, that worked.
I love you Big Man. You are rock solid.
Dad
Saturday, January 04, 2003
Dear Henry:
We saw your teachers when we went to celebrate Jack's birthday at school. Mrs. Berliant and Mrs. Newman and G'veret Epstein miss you so much. I think you were their favorite student. Most parents think this about their kids, that they're the most special and everything, but I think it is really the truth with you. I think you were the favorite patient, favorite student, favorite kid, favorite friend, favorite customer, favorite shopper, favorite nephew, grandkid, everything. Believe it, Henry, believe it.
I drove down Canal Road yesterday and now whenever I drive on it -- which is a lot -- I can't help but think about the time this summer when you almost died. I drove 90 miles an hour down that road when Mom called me and told me that you were either dead or dying. I couldn't believe it. I needed to make sure that I got to the hospital in time to say goodbye to you. You recovered so fast that I knew you were indestructible and would live forever. Remember how I told you that you were now "Harry Potter, The Boy Who Lived." Just like Harry, your mother's love saved you from death. How could anything have been more powerful than that love.
I just saw your bike is in the garage. I am crying now thinking about how lonely it is without you atop. Papa Teddy bought one for you and one for Jack. You were doing so great. This is the spring when you'd finally take off the training wheels. This is the summer when you'd finally swim well all by yourself. You just never had the time to master all of basics of boyhood. We were so close.
You know how lonely I am without you. I keep listening to this song called "Private Universe." I think you and I lived in one together. I love you. Our private universe is a lonely place without you.
Love, Love, Love, Love, Love, Love
XXXXXXXXXXXOOOOOOOOOOOOOOO
Dad
Saturday, December 28, 2002
Dear Henry:
It is Jack's birthday today. We all went to the zoo. It made me remember when you and I went to the aquarium at the Mall of America. Remember the baby turtles. They were really cute. You loved cute things, and you were such a cute thing. Unfortunately the Kirby DVD and game came the day you died. Jack is playing with it now and really enjoys it. Yesterday mom took Jack skiing for his birthday. He went with Nick and Jeffrey and Shelley. They all had fun. It was the kind of day that normally I would have spent with you at home cuddling on the couch, watching movies, being lazy, while Jack and mom were out being active and getting cold. Everything I do or don't do reminds me of you. This is a good thing. I can't wait to think about you today.
The guy at Palisades Pizzeria asked about you today. He was very sad when I told him what happened. Everyone loved you so much. I didn't even know the guy knew you or your name. You made a great impression with everyone who ever met you.
I think about you all day and night and wish I could hold you, kiss you, watch you laugh and hear your voice. I don't want any more time to pass since the days we last spent together. I am afraid of losing the clarity of my memories of you.
I have so much to tell you. Tomorrow is Darrell Green's last football game. He is retiring from playing football with the Redskins the same way that Cal Ripken stopped playing baseball with the Orioles. Michael Jordan is still playing basketball with the Wizards but he has said that he will not play anymore after this season. You got to see a lot of great professional athletes play. I remember getting you out of bed to watch Mark McGuire break Roger Maris' homerun record. And who could forget the time you spent with Cal in the dugout talking Pokemon or when you took batting practice behind A-Rod on the Metrodome field. I am sorry we didn't get to go to a Wizards game or a Redskins game.
The other day Mom and I went and bought some licorice in Georgetown. You might remember that you and I used to do that often for mom before going to the clinic. We stopped into one store and we ran into your camp counselor. She was very sad, and said she loved you a lot. Who didn't. Then we drove over to the clinic. When we got to the hospital we saw Dr. Abu Ghoush. We gave her some of your old Peptamen Jr. and other supplies. We are going to give them the blood pressure machine too. Hopefully another family will be able to use it. I threw all of your pills down the drain the other day. You would have loved that. It was kinda like when you dumped all of your CSA or whatever it was down the drain that time on the road to Minnesota. Sorry that we couldn't have gotten rid of those pills sooner. I know it was no fun for you.
Mom also gave the clinic your yellow toolbox, which she filled with all different sorts of bandaids. Dude, they have these new Star Wars bandaids that you'd love. The package is really cool; it has a hologram or something like that on it. We are going to make sure the toolbox is always stocked with good bandaids so the kids at the clinic have fun choices. You were the world's greatest bandaid lover. Speaking of boxes, Jack made a memory box where he put some of your favorite things. It will help him think of you. He misses you so much. I bought Stuart Little 2 to watch with him, but he really wasn't interested. It was more your kind of movie and I was sad that I couldn't watch it with you.
Maybe we can read these letters to you out at the cemetery or something. I look forward to visiting you out there. I hope you're not cold or lonely. I wish I could keep you warm and safe. Maybe we can watch Stuart Little 2 together. I'll charge your DVD player.
All of my love forever.
Dad
Henry's classmates read a list of things they learned from Henry:
Henry taught us how to be best friends.
Henry taught us about nature.
We learned to LOVE super heroes.
We learned to love brothers and sisters.
We learned not to complain.
He taught us how to always be sweet.
Henry taught us all about whales during our ocean life study.
We learned how to be kind to each other.
Henry taught us many short vowel words.
We learned to smile a lot!
We learned to take a good nap when we need one (my favorite).
Henry's best friend, Ari, prepared these words:
Henry was my special friend
who I played with many times.
He taught me many things in life
like how to smile and to be brave.
Henry was my best friend who I
knew for five years.
When Henry passed away I was
very sad but I still remember Henry
and never will forget what a cool
person he was.
A few songs were sung, and my favorite was
Mi Ha'ish
(psalm 134)
Me ha-ish hefafetz chayim, Ohev yamim lirot tov
Who is the one who desires life, loving their days, doing good?
N’tzor l’shoncha marah, guard your tongue from evil
Us’ftecha d’daber mirma, and your lips from speaking falsehood.
Sur marah, v’aseh tov, Depart from evil and do good;
Bakesh shalom v’rodfayhu, Seek peace and pursue it.
When we sing this on the High Holidays I love the melody but always seem to focus on the don't gossip or tell untruths part. It was only yesterday that the beautiful melody and the "Who is the one who desires life, loving their days, doing good?" and "...do good, Seek Peace and pursue it" parts came together for me in the image of Henry.
Many of the rememberances centered on Henry's smile.
and how nice and outgoing he was
For the past few weeks I have left this alone and been writing letters to Henry, sometimes 3 or 4 a day. I went back through them the other day and I think it is okay to copy a few short excerpts from them here. I chopped things up a bit so it might not really flow too well. Most of the letters are spent telling Henry how much I love him and miss him. It is unbelievable how many different ways I can write that.
Tuesday, January 07, 2003
Dear Henry:
Another person at the conference Mommy went to (Laurie was a participant this past week in a conference sponsored by the Johns Hopkins Genetics and Public Policy Center and was on a panel with Leon Kass, the Chairman of the President's Commission on Bioethics) was a rabbi. His name is Rabbi Gerald Wolpe. He told me that he said a mishaberach for you when you were sick. He heard about you when we did the bone marrow donor drives a few years ago. His son is a rabbi too. His name is Rabbi David Wolpe and he writes books. As it happens, Mom bought me one of his books called "Making Loss Matter." It is really interesting and helpful. Here is something he wrote.
The times when we feel utterly defeated are the moments when we have the chance to see farther, to reach down deeper into ourselves, to acquire wisdom. It is the time to begin dreaming wise dreams.
In another part of the book he writes,
Superheroes of children's comic books are projections of the child's imagining the power to change the world.
Monday, January 06, 2003
Dear Henry:
Sorry I haven't written but I have been helping Mom with something she was writing on the computer. She wrote a presentation to make to a bunch of really important people today. She talked about what we did to try to have another baby that had healthy blood to give to you. We want to make sure other families get a chance to do what we did and hopefully it will work for them. It was nice and hard to see our friend Sharon who was here for the same meeting. Sharon came here from Tel Aviv. You probably remember when we saw Sharon in New York with her husband Yavin and their little boy Amitai. He had the same problem with his blood that you had. Sharon -- you say "Shah-rown" the way you say the Hebrew words you learned in school -- had a baby with the help of Mark and Dr. Rosenwaks and her name is Alma. Doctors in Israel gave Amitai some of Alma's blood the same way you got your new blood in Minnesota from Beverly, your wonderful donor. It looks like Amitai is going to be okay and not have any of the problems you had. When Sharon spoke today to the doctors, she said that Henry Strongin Goldberg saved Amitai's life. You did. That is the best thing that any person can do. Saving someone's life and loving people are the greatest things we can ever do and you did both. I am proud of you.
We will go visit Sharon and her family in Israel some time. I am sorry that you never saw Jerusalem. It is so beautiful. Yavin and Sharon planted a small grove of trees on a hill overlooking Jerusalem in your honor.
I want to show you an email that Mom and I got from one of the teachers who helped in Aunt Tracey's class.
Dear Laurie and Allen.
Dec.31, 2002
My name is Elizabeth Aloni, teacher at Gan Ha Yeled at Adas Israel (the
Chicks class). Last year, in a shabbat class celebration Henry came
over as a special guest for Sam Strongin's. That was a very special day for all
of us, the little ones were observing all Henry's motions and inputs.
Anyway G-d bless his memory. What I want to tell you is that on that day, when
we passed the Tzedakah box to collect pennies for charity, Henry said
"this is very important, we should give this money to the poor children in
Africa or Afganistan...."
That was very sweet of you. You always thought of others (starting with me, Mom, Jack and Joe) and that was really nice and really grown up of you.
Saturday, January 04, 2003
Dear Henry:
Sometimes when I read or type things said by someone else I can hear the other person's voice. So I am going to give it a try now with us. I pray it works.
Goodnight Henry. I love you all the way to Uranus and back.
Very funny. Goodnight Dad. I love your butt, too.
You know, that worked.
I love you Big Man. You are rock solid.
Dad
Saturday, January 04, 2003
Dear Henry:
We saw your teachers when we went to celebrate Jack's birthday at school. Mrs. Berliant and Mrs. Newman and G'veret Epstein miss you so much. I think you were their favorite student. Most parents think this about their kids, that they're the most special and everything, but I think it is really the truth with you. I think you were the favorite patient, favorite student, favorite kid, favorite friend, favorite customer, favorite shopper, favorite nephew, grandkid, everything. Believe it, Henry, believe it.
I drove down Canal Road yesterday and now whenever I drive on it -- which is a lot -- I can't help but think about the time this summer when you almost died. I drove 90 miles an hour down that road when Mom called me and told me that you were either dead or dying. I couldn't believe it. I needed to make sure that I got to the hospital in time to say goodbye to you. You recovered so fast that I knew you were indestructible and would live forever. Remember how I told you that you were now "Harry Potter, The Boy Who Lived." Just like Harry, your mother's love saved you from death. How could anything have been more powerful than that love.
I just saw your bike is in the garage. I am crying now thinking about how lonely it is without you atop. Papa Teddy bought one for you and one for Jack. You were doing so great. This is the spring when you'd finally take off the training wheels. This is the summer when you'd finally swim well all by yourself. You just never had the time to master all of basics of boyhood. We were so close.
You know how lonely I am without you. I keep listening to this song called "Private Universe." I think you and I lived in one together. I love you. Our private universe is a lonely place without you.
Love, Love, Love, Love, Love, Love
XXXXXXXXXXXOOOOOOOOOOOOOOO
Dad
Saturday, December 28, 2002
Dear Henry:
It is Jack's birthday today. We all went to the zoo. It made me remember when you and I went to the aquarium at the Mall of America. Remember the baby turtles. They were really cute. You loved cute things, and you were such a cute thing. Unfortunately the Kirby DVD and game came the day you died. Jack is playing with it now and really enjoys it. Yesterday mom took Jack skiing for his birthday. He went with Nick and Jeffrey and Shelley. They all had fun. It was the kind of day that normally I would have spent with you at home cuddling on the couch, watching movies, being lazy, while Jack and mom were out being active and getting cold. Everything I do or don't do reminds me of you. This is a good thing. I can't wait to think about you today.
The guy at Palisades Pizzeria asked about you today. He was very sad when I told him what happened. Everyone loved you so much. I didn't even know the guy knew you or your name. You made a great impression with everyone who ever met you.
I think about you all day and night and wish I could hold you, kiss you, watch you laugh and hear your voice. I don't want any more time to pass since the days we last spent together. I am afraid of losing the clarity of my memories of you.
I have so much to tell you. Tomorrow is Darrell Green's last football game. He is retiring from playing football with the Redskins the same way that Cal Ripken stopped playing baseball with the Orioles. Michael Jordan is still playing basketball with the Wizards but he has said that he will not play anymore after this season. You got to see a lot of great professional athletes play. I remember getting you out of bed to watch Mark McGuire break Roger Maris' homerun record. And who could forget the time you spent with Cal in the dugout talking Pokemon or when you took batting practice behind A-Rod on the Metrodome field. I am sorry we didn't get to go to a Wizards game or a Redskins game.
The other day Mom and I went and bought some licorice in Georgetown. You might remember that you and I used to do that often for mom before going to the clinic. We stopped into one store and we ran into your camp counselor. She was very sad, and said she loved you a lot. Who didn't. Then we drove over to the clinic. When we got to the hospital we saw Dr. Abu Ghoush. We gave her some of your old Peptamen Jr. and other supplies. We are going to give them the blood pressure machine too. Hopefully another family will be able to use it. I threw all of your pills down the drain the other day. You would have loved that. It was kinda like when you dumped all of your CSA or whatever it was down the drain that time on the road to Minnesota. Sorry that we couldn't have gotten rid of those pills sooner. I know it was no fun for you.
Mom also gave the clinic your yellow toolbox, which she filled with all different sorts of bandaids. Dude, they have these new Star Wars bandaids that you'd love. The package is really cool; it has a hologram or something like that on it. We are going to make sure the toolbox is always stocked with good bandaids so the kids at the clinic have fun choices. You were the world's greatest bandaid lover. Speaking of boxes, Jack made a memory box where he put some of your favorite things. It will help him think of you. He misses you so much. I bought Stuart Little 2 to watch with him, but he really wasn't interested. It was more your kind of movie and I was sad that I couldn't watch it with you.
Maybe we can read these letters to you out at the cemetery or something. I look forward to visiting you out there. I hope you're not cold or lonely. I wish I could keep you warm and safe. Maybe we can watch Stuart Little 2 together. I'll charge your DVD player.
All of my love forever.
Dad
Friday, December 27, 2002
'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.
He was 7.
A District resident, he had spent nearly the last six weeks of his young life at Fairview-University Medical Center in Minneapolis. It was at that hospital that he had had the bone marrow transplant 2 1/2 years ago, a procedure that his parents, Laurie Strongin and Allen Goldberg, had hoped would allow their son to live.
He was an "amazing" child, said Strongin, in good spirits -- despite a life of blood tests, surgeries, transfusions and chemotherapy. Until the last two weeks of his life, "he was indomitable," said his mom, "just brave and hopeful and strong."
He loved Superman, Batman, Pokeman and Disney World, and had attended kindergarten last year at the Jewish Primary Day School in Silver Spring. This year, he began first grade at the school, but then as his health declined, he switched to home schooling. Earlier, he had attended the Gan Hayeled at Adas Israel Congregation in the District, where his family holds membership.
His brother, Jack, was born in late 1996. His parents had hoped he would be a genetic bone marrow match for Henry. He wasn't, but became his big brother's companion.
Strongin and Goldberg decided to try in-vitro fertilization, trying to produce an embryo that would develop into a child with a perfect genetic match. They gave up after nine failed attempts at pregnancy, and were featured in a July 2001 New York Times Magazine article about the controversial procedure and the medical journey they were taking with their son.
Henry was also featured on Nightline.
The family sought an unrelated marrow donor. In April 2000, WJW featured an article about Henry and bone marrow testing drives being held locally in hopes of finding a donor.
In July 2000, he had the transplant.
"We tried everything we could," said his mom. "We don't have any regrets."
Somehow, she said, "we were able to enjoy every minute of every day. While we didn't take it for granted that we were going to have a long life together, at the same time, we didn't really believe Henry would ever die."
Meanwhile, 14 months ago, the couple had a third son, Joe, conceived, as Strongin said, "the good old-fashioned way."
Joseph's genetic make-up did not match Henry's, but he and Jack are matches for one another. "They'd better not need it in my lifetime," said their mother.
She and her husband hope to set up a foundation in Henry's name that will do research on Fanconi anemia.
Meanwhile, they ask that contributions be sent to the Fanconi Anemia Research Fund, 1801 Willamette St., Suite 200, Eugene, OR 97401.
Survivors also include Henry's grandparents, Ted Goldberg of Rockville and Pat and Sy Strongin of the District.
In a eulogy that Laurie Strongin wrote for her son, she said, "Before he could even smile or talk, Henry taught me what was important and what just didn't matter at all; and he taught me to savor each moment; to love; to laugh and to dwell in possibility."
--------------------------------------------------------------------------------
Copyright 2002, Washington Jewish Week
1500 East Jefferson St.
Rockville, MD 20852
(301) 230-2222
Wednesday, December 18, 2002
laurie and i went to henry and jack's school yesterday. jack acted like he always does when we bring him to school. he just jumped in without even a "goodbye" to mom and dad. then laurie and i visited henry's classroom. his desk has his name on it and all of his stuff still inside. it is very lonely. the school is going to ceremoniously remove the desk after the first 30 day mourning period to give the kids closure. inside henry's desk was a drawing that he made for bella. he had written her name and his.
on henry's birthday, his present was to go to the patagonia store in georgetown and pick out some things to keep him warm. henry just loved the hat, vest and coat he picked out and wore them all the time. i mean all the time. i even bought him long underwear and he took to wearing the top and bottoms as clothes. every day. from his birthday in october to the time he went to the hospital in minnesota he was either naked or wearing the patagonia long underwear. for the last night of hannukah i bought him a new long underwear top with a zipper at REI. he kept asking me how come i had tops with zippers and he didn't. a hint, perhaps. laurie was staying at the hospital that night so i gave the top to her to give to henry. laurie said that henry was so excited when she gave it to him. he told her to touch the fabric because it was so soft. i was fortunate enough to see him in the top that next morning when he went into septic shock. they removed it just before he was intubated.
on henry's birthday he was in isolation at our house because his immune system was so suppressed. friends of nana pat decided they would hire a magician to entertain henry and jack. this was henry's birthday party. he was too busy having fun to feel sorry for himself that he couldn't have friends come over. i think the smiles speak for themselves.
tonight is the last night of shiva at our house. in silence tomorrow laurie and i will blow out the candle that has burned for 7 days. we then go for a walk around the block to mark our return to the community. around the block where henry rode his bike. around the block where henry first felt snow. around the block that carried us so many nights to max's ice cream. i am going to have to learn to walk without him.
Tuesday, December 17, 2002
today or tomorrow laurie is planning to send out an email to our email list asking anyone who has something to share -- henry story, funny anecdote, whatever -- to email them to us. laurie's email is lstrongin@starpower.net and mine is allengoldberg@starpower.net .
i went out to our minivan for the first time since getting back and found a treasure trove of henry's tchotckes stuffed in the pocket behind the front passenger seat. it reminded me of a whole bunch of things that henry loves. thank goodness he was such a pack rat. i think i'll be making discoveries of henry's treasures for months to come.
normally, i couldn't/wouldn't step out of our house and away from henry without my cell phone. i lost it in the confusion of our return from minneapolis last week and i'm in no particular hurry to hunt it down.
we're now taking jack to his and henry's school in a little visit. we are just going over to say "hello." i don't know how this will affect jack. i think it is going to be great for jack to see his friends and equally hard for laurie and me to see henry's classmates and teachers. jack appears pretty okay by day, his usual ebullience is just slightly deflated. a lot of jack's friends come over to visit, and has been going out for fun times with friends and family and their kids. it is at night when jack has the most trouble. this former king of snoozing two seconds after tuck-in has found that he cannot get to sleep. to help him fall asleep we've had he come in bed with us and another night laurie snuggled with him until they fell asleep together in the top bunk of the bunk bed that henry and he shared.
here is a photo that i just took of jack with his lego creations of the past few days. laurie and i have been giving him his birthday presents without waiting until his real birthday. he was afraid that he was going to have to celebrate his birthday in minnesota.
i went out to our minivan for the first time since getting back and found a treasure trove of henry's tchotckes stuffed in the pocket behind the front passenger seat. it reminded me of a whole bunch of things that henry loves. thank goodness he was such a pack rat. i think i'll be making discoveries of henry's treasures for months to come.
normally, i couldn't/wouldn't step out of our house and away from henry without my cell phone. i lost it in the confusion of our return from minneapolis last week and i'm in no particular hurry to hunt it down.
we're now taking jack to his and henry's school in a little visit. we are just going over to say "hello." i don't know how this will affect jack. i think it is going to be great for jack to see his friends and equally hard for laurie and me to see henry's classmates and teachers. jack appears pretty okay by day, his usual ebullience is just slightly deflated. a lot of jack's friends come over to visit, and has been going out for fun times with friends and family and their kids. it is at night when jack has the most trouble. this former king of snoozing two seconds after tuck-in has found that he cannot get to sleep. to help him fall asleep we've had he come in bed with us and another night laurie snuggled with him until they fell asleep together in the top bunk of the bunk bed that henry and he shared.
here is a photo that i just took of jack with his lego creations of the past few days. laurie and i have been giving him his birthday presents without waiting until his real birthday. he was afraid that he was going to have to celebrate his birthday in minnesota.
Rabbi Justin David
Congregation B'nai Israel
Northhampton, MA
Remarks at Henry's Funeral
Friday, December 13, 2002
Laurie, Allen, Jack, Pat, Sy, Ted, Abby, Andrew, Andy, Tracy, Jennifer, Dan, what is there to say? So much has already been so eloquently expressed by you, Laurie and Allen, through your e-mails, through your editorials, through your boundless acts of strength and compassion, and, most of all, by the rich, courageous, vibrant life of Henry Strongin Goldberg. In a sense, what is incumbent upon all of us to convey to you is quite simple - that we love you, that you are not alone, that Henry’s life and your life is testament to a source of compassion and strength that exists outside of us and through us simultaneously.
After your loss, our loss of Henry, our task is to attend to those regions of the mind and heart where Henry continues to live. Our scriptures teach us, that the human soul is the candle of God. Just as divine energy, divine love, divine compassion reign eternal, symbolized for us in the eternal light in every synagogue, so that bit of love, compassion, that spark that animates us, lives on. Our task now, is to reflect on Henry’s remarkable life, and to sense Henry’s continuing presence, like a candle whose flame appears to be extinguished, but whose light continues to give off warmth and radiance.
Henry was a light to all of us - to those of us who were involved in the intimate details of his day to day care, to those of us who are his family, to those of us who are intimates of Laurie and Allen, to his teachers, friends, parents of friends, members of this community, of work community - anyone who was touched by the life of Henry Strongin Goldberg. Henry warmed us with his courage. He inspired us with his strength. He delighted us with his spirit. Henry imparted the life that comes with hope - in just his being a kid and partaking of the pleasures of childhood.
It was Shelley Remer who first told me about Henry. Fighting back the tears, Shelley told me about the little boy in Elaine Berman’s class who would most likely have to have a bone marrow transplant. Shelley told me that I could pick him out immediately, because he was always wearing a Batman costume. And she was right. There was Henry, the first time I met him, eagerly and purposefully putting away blocks, wearing his Batman costume. I introduced myself to the kids in the class, whereupon Henry looked me right in the eye, pointed at me, and said, “You’re Mr. Ratburn,” a character from Arthur. As a parent, you learn to see the world through your child’s eyes based on how he or she plays. And even from this first glimpse, without all of Laurie and Allen’s reminders of how much Henry loved Pokemon, and superheros, it was clear that Henry saw the world as a place to embrace and to explore.
There are two stories that Laurie and Allen shared with me last night that I feel particularly compelled to share with you as a rabbi, because they exemplify the love and compassion that was so present in Henry’s life, and that can imprint Henry’s lasting presence upon our hearts. Many of you know of the love Henry had for his Sunflower teacher, Liani, and in particular, for her daughter, Bella. This summer, Bella was in a ballet performance, and Henry had to be there. The day of Bella’s performance, Henry woke up, cast aside his usual kid clothes for a pair of khaki pants, a yellow button down shirt and a blue blazer, came downstairs, and sat, all dressed, for two hours, until it was time to go to the performance. At one point, Laurie said, “It’s time to go,” And Henry said, “Wait. I have to get her flowers.” And to hear Laurie tell it, Henry sat transfixed throughout her performance, as if Henry was watching the love of his life.
Many people remarked how Henry was a help to younger siblings. It was approximately a little over two years ago, at the time that Henry was about to return after his transplant, that a family at the Gan here at Adas Israel suffered a terrible tragedy, when a man died suddenly, leaving his wife and two small children. Simon, one of the children, had the blessing of being one of Henry’s closest friends. Henry said to Allen and Laurie, “I want to make him feel better. I want to talk to him about his daddy.” And so, at a time of fragile recovery, when the world had closed in on Henry and was slowly opening back up, Henry called his friend.
If only we could embrace each opportunity for living so completely, that we could express our love so simply and so spontaneously. To the extent that each of us strives to live with great er compassion and tenderness, we embrace Henry’s living presence in us.
Our tradition is wise in recognizing the profound degree to which we absorb the influences of parents and all who care for us. Henry’s love, his wisdom, his joy, his vitality were uniquely his, but they were also learned, and so in remembering Henry, we have to remind ourselves of the extraordinary accomplishment s of Laurie, Allen, Jack, family, Pat, whose constant presence and energy defy description. Laurie and Allen, you recalled to me last night, with great admiration, how Henry endured what he had to endure with steadfastness, never complaining, even though he had every right to moan until the end of time. I think I speak for everybody here when I reflect on how remarkable it is that, through disappointment, pain and great darkness, not once did you ever show any bitterness. We would love you all the same if you had, but the two of you must have made a remarkable internal decision that you were going to greet every challenge with a sense of purpose, with love and compassion, and with hope. For 7 years, you lived a life of no limits, because your love for Henry was boundless, and so your efforts to keep him alive were boundless.
Jack, I hope that you feel proud, that you loved and will always love your big brother, who loved and will always love you. Henry loved you, Jack, simply because you were his brother, his best friend given to him by your parents, because your kind and considerate toward him, because you played with him and watched TV with him. The greatest thing any of us could ask for is a best, best buddy. When we grow up, that best, best buddy might be our husband or wife, friend, but when we are kids, that best buddy should be our brother. And Jack, you were Henry’s best buddy, the greatest thing he could ask for.
In my synagogue in Northampton, MA, we have a pamphlet titled, “Do Jews believe in the soul’s survival?” For me, having been blessed to know Henry Strongin Goldberg, the answer is undeniably clear. In all the concentric circles of relationship, love, support, that existed and blossomed around Henry Strongin Goldberg for 7 years, Henry’s flame, God’s little candle of vibrant intensity, illumines our lives. Any child who benefits from new treatments to fight FA will do so because of the fight Henry made. Any physician or researcher motivated to explore the lastest therapy will do so because of Henry’s brave example. Already, Laurie and Allen can tell you about children who have benefitted from Henry’s example.
Henry will live on in the heart of every child who will be inspired by Henry’s life, directly or indirectly, to live more sweetly - with more vigor, compassion and imagination.
Henry will always be alive for we who regarded him with love and admiration.
And, Laurie, Allen, Jack, for 7 years your lives have been Henry’s life, so intricately intertwined. God’s candle that was given to you for too short a time has already ignited additional flames within you that nothing can extinguish.
It is our tradition to bestow these humble words upon mourners - Ha-Makom yinachem. Rabbi Harold Kushner struggles with what these words mean in the face of tragedies such as yours. Instead, he looks for comfort in the following questions: How do we respond? What do we intend to do? Are we capable of loving, in a world that has disappointed us? With all of its imperfections, are we capable of loving a world, because it does bestow its measure of beauty and goodness? And can we love ourselves and the people around us, even though none of us is as strong as we would like to be?
May these questions be the beginning of some solace and healing. Ha makom yinachem - may the love of all of us here, and those not here, of family, friends, teachers, doctors, children, admirerers, lifetime friends of Henry, give you a glimplse of the ultimate love, that brings true comfort.
Y’hi zichro baruch - may Henry’s memory be an eternal blessing for all of us.
Henry's grandmother, "Nana Pat," a.k.a. Laurie's mom, wrote this and read it last night at the Shiva.
Henry Strongin Goldberg’s Tale
A fable for all time – a tale of love, courage, determination, life, compassion, respect, laughter and love
Born of love, a life of love, and a memory of love
A lifetime lived in only seven years, one month, two weeks, and two days
Oh, too short, but filled with zest, fun, the love of many, happiness, adventures, - as a friend of ours said, a life filled with more experiences than many centenarians can count
Henry taught those of us, including so many in this room, the value of love, truth, courage, ability to adapt, and fun
Recently, I had the good fortune to take Henry and Jack to see the most recent Star Wars movie. When Henry came home and was asked what he liked most about the movie, he told Laurie that Yoda was his favorite, because he was small, fast and wise. Just like Henry,
Climbing trees, exploring the secret passage, playing hide and seek. Playing with his beloved aunts and uncles and cousins. Henry was so fortunate, he even had two uncle stinkies or actually one Uncle Stinky and one Uncle Poopy. Winning at chess – he even beat Uncle Peter, who Henry suggested needed more practice – winning at endless games of war, teaching Jack the ways of the world, wrestling with Jack like they were Siamese twins, finally mastering a running somersault on the beach, driving the tractor at St. Michaels with Papa Sy, spelling Papa Sy’s name at the family Chanukah party, catching his first fish, taking responsibility for flushing his lines and giving himself his medication, sitting in that chair as he was wheeled in for his radiation treatment and singing songs, being with Grandma Phyllis and Papa Teddy, patting Joe Joe on the head with so much love – paddling the kayak, listening to stories (not encyclopedic facts like Jack liked), climbing trees, repelling rock walls with Debbie Blum, doing Tae Kwan Do, reciting all the lines from his favorite movies, laughing at his favorite parts over and over, loving Bella, going to Disney World, and loving his mommy and daddy, and Jack and Joe.
But at the root of this Superhero was Henry’s good fortune to be born to Laurie and Allen, who with their endless bravery, respect for Henry and his life, love, devotion, advocacy for Henry, hope for Henry, fun-loving spirits, souls and willingness to share Henry with all his family, friends and the world .
When Henry was born, Sy and I determined to celebrate every day of his life. I was especially lucky to have been given the gift to walk the road with Laurie, Allen, Henry, Jack and Joe – the greatest gift Laurie and Allen could have given me.
There is a traditional Hebrew blessing Zichrono liveracha – His memory will be a blessing.
The Goldberg Strongin family thank you for being here, for your love and for sustaining Laurie and Allen, Henry, Jack, and Joe through Henry’s journey. Thank you for sharing Henry with us.
Donations to the Fanconi Anemia Research Fund
The family is planning to establish a foundation or fund to honor Henry and to share his life force with the world
So Dance with Henry, sing his song and go out in the world doing good, making people’s lives better and Henry will live through all of us.
Henry Strongin Goldberg’s Tale
A fable for all time – a tale of love, courage, determination, life, compassion, respect, laughter and love
Born of love, a life of love, and a memory of love
A lifetime lived in only seven years, one month, two weeks, and two days
Oh, too short, but filled with zest, fun, the love of many, happiness, adventures, - as a friend of ours said, a life filled with more experiences than many centenarians can count
Henry taught those of us, including so many in this room, the value of love, truth, courage, ability to adapt, and fun
Recently, I had the good fortune to take Henry and Jack to see the most recent Star Wars movie. When Henry came home and was asked what he liked most about the movie, he told Laurie that Yoda was his favorite, because he was small, fast and wise. Just like Henry,
Climbing trees, exploring the secret passage, playing hide and seek. Playing with his beloved aunts and uncles and cousins. Henry was so fortunate, he even had two uncle stinkies or actually one Uncle Stinky and one Uncle Poopy. Winning at chess – he even beat Uncle Peter, who Henry suggested needed more practice – winning at endless games of war, teaching Jack the ways of the world, wrestling with Jack like they were Siamese twins, finally mastering a running somersault on the beach, driving the tractor at St. Michaels with Papa Sy, spelling Papa Sy’s name at the family Chanukah party, catching his first fish, taking responsibility for flushing his lines and giving himself his medication, sitting in that chair as he was wheeled in for his radiation treatment and singing songs, being with Grandma Phyllis and Papa Teddy, patting Joe Joe on the head with so much love – paddling the kayak, listening to stories (not encyclopedic facts like Jack liked), climbing trees, repelling rock walls with Debbie Blum, doing Tae Kwan Do, reciting all the lines from his favorite movies, laughing at his favorite parts over and over, loving Bella, going to Disney World, and loving his mommy and daddy, and Jack and Joe.
But at the root of this Superhero was Henry’s good fortune to be born to Laurie and Allen, who with their endless bravery, respect for Henry and his life, love, devotion, advocacy for Henry, hope for Henry, fun-loving spirits, souls and willingness to share Henry with all his family, friends and the world .
When Henry was born, Sy and I determined to celebrate every day of his life. I was especially lucky to have been given the gift to walk the road with Laurie, Allen, Henry, Jack and Joe – the greatest gift Laurie and Allen could have given me.
There is a traditional Hebrew blessing Zichrono liveracha – His memory will be a blessing.
The Goldberg Strongin family thank you for being here, for your love and for sustaining Laurie and Allen, Henry, Jack, and Joe through Henry’s journey. Thank you for sharing Henry with us.
Donations to the Fanconi Anemia Research Fund
The family is planning to establish a foundation or fund to honor Henry and to share his life force with the world
So Dance with Henry, sing his song and go out in the world doing good, making people’s lives better and Henry will live through all of us.
Sunday, December 15, 2002
lemonade stands
rocks
anything "rare"
his teachers
uno, skip bo & blink
chess
his portable dvd player
monkey bars
rainforest cafe
joseph and the amazing technicolor dreamcoat
sunglasses
"his" green chair
urinals
nana pat's mustang convertible
the beetle car
fishing with papa sy
making telephone calls
tae kwon do with anthony, vj & mr. kim
pee wee herman
lady and the tramp 2
the gap
his orioles wallet
the secret campground
sea kayaking with me
rocks
anything "rare"
his teachers
uno, skip bo & blink
chess
his portable dvd player
monkey bars
rainforest cafe
joseph and the amazing technicolor dreamcoat
sunglasses
"his" green chair
urinals
nana pat's mustang convertible
the beetle car
fishing with papa sy
making telephone calls
tae kwon do with anthony, vj & mr. kim
pee wee herman
lady and the tramp 2
the gap
his orioles wallet
the secret campground
sea kayaking with me
Saturday, December 14, 2002
Laurie's Eulogy
On October 25, 1995, Henry made me a mom and a better person. Before he could even smile or talk, Henry taught me what was important and what just didn’t matter at all; and he taught me to savor each moment; to love; to laugh and to dwell in possibility.
And together as a family we have done just that, packing more smile and laugh-producing times together in seven years than many do in a lifetime. We have lived and loved as though we could one day lose Henry while simultaneously pushing love and science to their limit to ensure that we would have him in our lives forever. Henry has driven a tractor, fallen in love, danced with 10 women at one time, and laughed until he fell over. Just two days ago, Henry finally got the biggest, baddest Swiss Army knife which he held onto til the very end. We have lived every day with Henry to its fullest. We have had ice cream for dinner; transitioned from the hospital to running a lemonade stand in a matter of minutes; gone to Cactus Cantina seven nights a week; acquired every single Pokemon figure made. At last count we had 188. He met President Clinton, Cal Ripken, Batman, the entire Minnesota Twins, and more significantly, they got to meet him. We did all those things because at that moment in time we could and because, though we always hoped things would get better, we knew enough to go when the going was good. Just in case.
As I’m sure all of you know, Henry just made everything better. He was wise well beyond his years and he was so much fun. It’s almost as if all the good things in life were created with Henry in mind. No one had greater appreciation for Disneyworld, Funland, Sullivans or any of the other fun things in life than Henry. He was a great lover of music and could sing “Brick House” and dance with the best of them. I will cherish my memories of Allen and Henry dancing together in our home.
It is such a privilege to be Henry’s mother and am thankful every day that Allen and I found one another and created such a wonderful, love-filled family.
It’s no surprise that Henry has had an ongoing fascination with superheroes. He put on a Batman costume for Halloween when he was two and didn’t take it off until we left for Minnesota 2 ½ years later. Henry didn’t need it anymore since he had received sufficient training and at that point he had achieved superhero status in his own right. As my brother Andrew said, Batman should wear a Henry shirt.
My dad used to tell me that a day without me was a day without sunshine. Now I know what he was talking about. Sweetie, you are everything enjoyable in life. You are a lemonade stand on a hot summer day. You are the first piece in a box of Godiva chocolate; kite flying on the beach; the final encore at a Springsteen show; smores at a campfire; a piñata at a birthday party; fireworks on the 4th of July; a ride on a ferris wheel; the glow of candlelight during a thunder storm; finding a sand dollar on the beach; penny candy; class outside; the last ski run of the day; meeting your child for the first time. The loss of you drenches my heart in sorrow.
One nightfall, the evening before we left for Henry’s transplant, Henry and Jack were taken by the magic of fireflies and started to run around our yard, catching one after another. Each catch was a victory and was met with curiosity and excitement. Some of those bugs sacrificed their lives at the clumsy, but curious hands of these three and four-year-old boys.
I watched and let myself feel what it’s like to be a kid, filled with curiosity and wonder about the world. At some point I noticed that Henry had disappeared, so I went inside to see what had become of him. I went upstairs and slowly opened his bedroom door and heard a whisper telling me to come in quick and to shut the door. I found Henry lying on his back watching the fireflies, which he had brought upstairs one-by-one and set free, light up his room.
I’m not sure how Cactus Cantina or Max’s Ice Cream will survive without you and I sure wish that Daddy, Jack, Joe and I didn’t have to. I miss you so, so much already honey. Our job now is to ensure that everything is better because of you. So, like you, we will draw our swords, but don’t expect the same resiliency. You set the bar high. Give us a while and we will make you proud, my son.
So today we say farewell to your body and every day from now on we will cherish your soul and spirit for they live within us now. Goodbye Henry.
On October 25, 1995, Henry made me a mom and a better person. Before he could even smile or talk, Henry taught me what was important and what just didn’t matter at all; and he taught me to savor each moment; to love; to laugh and to dwell in possibility.
And together as a family we have done just that, packing more smile and laugh-producing times together in seven years than many do in a lifetime. We have lived and loved as though we could one day lose Henry while simultaneously pushing love and science to their limit to ensure that we would have him in our lives forever. Henry has driven a tractor, fallen in love, danced with 10 women at one time, and laughed until he fell over. Just two days ago, Henry finally got the biggest, baddest Swiss Army knife which he held onto til the very end. We have lived every day with Henry to its fullest. We have had ice cream for dinner; transitioned from the hospital to running a lemonade stand in a matter of minutes; gone to Cactus Cantina seven nights a week; acquired every single Pokemon figure made. At last count we had 188. He met President Clinton, Cal Ripken, Batman, the entire Minnesota Twins, and more significantly, they got to meet him. We did all those things because at that moment in time we could and because, though we always hoped things would get better, we knew enough to go when the going was good. Just in case.
As I’m sure all of you know, Henry just made everything better. He was wise well beyond his years and he was so much fun. It’s almost as if all the good things in life were created with Henry in mind. No one had greater appreciation for Disneyworld, Funland, Sullivans or any of the other fun things in life than Henry. He was a great lover of music and could sing “Brick House” and dance with the best of them. I will cherish my memories of Allen and Henry dancing together in our home.
It is such a privilege to be Henry’s mother and am thankful every day that Allen and I found one another and created such a wonderful, love-filled family.
It’s no surprise that Henry has had an ongoing fascination with superheroes. He put on a Batman costume for Halloween when he was two and didn’t take it off until we left for Minnesota 2 ½ years later. Henry didn’t need it anymore since he had received sufficient training and at that point he had achieved superhero status in his own right. As my brother Andrew said, Batman should wear a Henry shirt.
My dad used to tell me that a day without me was a day without sunshine. Now I know what he was talking about. Sweetie, you are everything enjoyable in life. You are a lemonade stand on a hot summer day. You are the first piece in a box of Godiva chocolate; kite flying on the beach; the final encore at a Springsteen show; smores at a campfire; a piñata at a birthday party; fireworks on the 4th of July; a ride on a ferris wheel; the glow of candlelight during a thunder storm; finding a sand dollar on the beach; penny candy; class outside; the last ski run of the day; meeting your child for the first time. The loss of you drenches my heart in sorrow.
One nightfall, the evening before we left for Henry’s transplant, Henry and Jack were taken by the magic of fireflies and started to run around our yard, catching one after another. Each catch was a victory and was met with curiosity and excitement. Some of those bugs sacrificed their lives at the clumsy, but curious hands of these three and four-year-old boys.
I watched and let myself feel what it’s like to be a kid, filled with curiosity and wonder about the world. At some point I noticed that Henry had disappeared, so I went inside to see what had become of him. I went upstairs and slowly opened his bedroom door and heard a whisper telling me to come in quick and to shut the door. I found Henry lying on his back watching the fireflies, which he had brought upstairs one-by-one and set free, light up his room.
I’m not sure how Cactus Cantina or Max’s Ice Cream will survive without you and I sure wish that Daddy, Jack, Joe and I didn’t have to. I miss you so, so much already honey. Our job now is to ensure that everything is better because of you. So, like you, we will draw our swords, but don’t expect the same resiliency. You set the bar high. Give us a while and we will make you proud, my son.
So today we say farewell to your body and every day from now on we will cherish your soul and spirit for they live within us now. Goodbye Henry.
Friday, December 13, 2002
i just got dressed. i haven't worn a suit much in the past few years. i bought this knowing i'd need it for my mom's funeral. i took a look in the mirror and i look like a little boy in a man's suit. josh baskin at the end of big. henry would insist on wearing a sports jacket for his dates with his girlfriend bella.
i turn 40 next week. i have made the same exact wish for the past 7 years when i blew out the candles.
i need to keep updating the list of henry's favorite things, but now it is for me. he really like balls, and super balls, in particular. he loved baseball bats and had quite a collection of every size. he loved riding carousels and we rode them from martha's vineyard to central park to glen echo. and he was a connoisseur of things Digimon.
it is really smokey out today.
i turn 40 next week. i have made the same exact wish for the past 7 years when i blew out the candles.
i need to keep updating the list of henry's favorite things, but now it is for me. he really like balls, and super balls, in particular. he loved baseball bats and had quite a collection of every size. he loved riding carousels and we rode them from martha's vineyard to central park to glen echo. and he was a connoisseur of things Digimon.
it is really smokey out today.
I don't know if anyone is still reading this but after the funeral I'll post the eulogy Laurie wrote. She is an amazing mother, a beautiful writer and the true love of Henry's life. My best friend Bill will read a letter that Henry's doctor, John Wagner, wrote that moves me to tears just thinking about. I think some other people might say something and I'll try to post whatever is appropriate.
Thanks for caring about Henry, Jack and Joe.
