Monday, November 03, 2003
This was your headstone unveiling service
October 26, 2003
1. Introduction and Welcome
Henry died on Wednesday, December 11, 2002.
He is the son of Allen and Laurie.
He is the brother of Jack and Joe.
He is the grandson of Pat, Sy, Phyllis and Ted.
He is the nephew of Jen, Dan, Tracey, Andrew, Abby and Andy.
He is the cousin of Joshua, Rachel, Michael, Hannah, Sam and Emma.
Today we gather to remember him and to dedicate a monument in his memory.
2. The Little Prince, Antoine de Saint-Exupery
"People have stars, but they aren't the same. For travelers, the stars are guides. For other people, they're nothing but tiny lights. And for still others, for scholars, they're problems. For my businessman, they were gold. But all those stars are silent stars. You, though, you'll have stars like nobody else."
"What do you mean?"
"When you look up at the sky at night, since I'll be living on one of them, since I'll be laughing on one of them, for you it'll be as if all the stars are laughing. You'll have stars that can laugh!"
And he laughed again.
"And when you're consoled (everyone eventually is consoled), you'll be glad you've known me. You'll always be my friend. You'll feel like laughing with me. And you'll open your window sometimes just for the fun of it...And your friends will be amazed to see you laughing while you're looking up at the sky. Then you'll tell them, 'Yes, it's the stars; they always make me laugh!'"
3. 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.
4. There are Stars, Hannah Szenes
There are stars whose light reaches the earth
Only after they themselves have disintegrated and are no more.
And there are people whose scintillating memory
Lights the world after they have passed from it.
These lights which shine in the darkest night
are those which illumine for us the path.
5. Relatives at Judean Memorial Gardens
We note that this cemetery, Judean Memorial Gardens, is where a number of Henry's relative's are buried. His Grandma Phyllis Goldberg, Great Aunt Ida Tishman, Great Uncle Ben, Great Grandparents Miriam and Sol Strongin and Great Aunt Ruth.
6. Unveiling and Dedication
[We remove the cloth from the stone and read from the stone's inscription.]
In memory of Henry Strongin Goldberg, we establish and consecrate this monument.
It is a token of our deep love and respect.
He is remembered now, and forever, part of the good in each of us.
May his soul be bound up in the bonds of life.
8. El Malei Rachamim, God Filled with Compassion
Let God remember the soul of Henry Strongin Goldberg
who went to his place of eternal rest.
Please let his soul be bound up with living in the continuum of life,
and may his rest be honorable.
Grant him abundant joy in your presence,
and sweet pleasures at your right hand for eternity. Amen.
God filled with mercy
dwelling in the heavens' heights,
grant perfect peace beneath the wings of your Shechinah,
amid the ranks of the holy and the pure,
illuminating like the brilliance of the skies
the souls of our beloved and our blameless
who went to their eternal place of rest.
May you who are the source of mercy
shelter them beneath your wings eternally,
and bind their souls among the living,
that they may rest in peace.
And let us say: Amen.
9. We Remember Them, Ronald Gittelsohn
At the rising of the sun and at its going down
We remember them.
At the blowing of the wind and in the chill of winter
We remember them.
At the opening of the buds and in the rebirth of spring...
We remember them.
At the blueness of the skies and in the warmth of summer
We remember them.
At the rustling of the leaves and in the beauty of autumn
We remember them.
At the beginning of the year and when it ends
We remember them.
When we are lost and sick at heart
We remember them.
When we have joy we crave to share
We remember them.
When we have decisions that are difficult to make
We remember them.
As long as we live, they too will live,
for they are now a part of us
And we remember them.
10. Mourner's Kaddish
Mourners: Yit-ga-dal ve-yit-ka-dash she-mey ra-ba
Be-al-ma div-ra chir-u-tey
Be-cha-yey-chon uv-yo-me-chon uv-cha-yey de-chol beyt yis-ra-el
Ba-a-ga-la u-viz-man ka-riv
Congregation: Ye-hey she-mey ra-ba me-va-rach
le-a-lam ul-al-mey al-ma-ya.
Mourners: Yit-ba-rach ve-yish-ta-bach ve-yit-pa-ar ve-yit-ro-mam
ve-yit-na-sey Ve-yit-ha-dar ve-yit-a-leh ve-yit-ha-lal she-mey de-kud-sha
Le-ela le-ela mi-kol bir-cha-ta
Ye-hey she-la-ma ra-ba min
Ve-cha-yim a-ley-nu ve-al kol
yis-ra-el ve-im-ru a-men.
O-seh sha-lom bim-ro-mav
hu ya-a-seh sha-lom a-ley-nu
ve-al kol yis-ra-el
ve-al kol yosh-vey tevel
Mourners: Let God's name be made great and holy in the world that was created as God willed. May God complete the holy realm in your own lifetime, in your days, and in the days of all the house of Israel, quickly and soon. And say: Amen.
Congregation: May God's great name be blessed, forever and as long as worlds endure.
Mourners: May it be blessed, and praised, and glorified, and held in honor, viewed with awe, embellished, and revered; and may the blessed name of holiness be hailed, though it be higher by far than all the blessings, songs, praises, and consolations that we utter in this world. And say: Amen.
May Heaven grant a universal peace, and life for us, and for all Israel. And say: Amen.
May the one who creates harmony above, make peace for us and for all Israel, and for all who dwell on earth. And say:
This is what Mom said for her eulogy. She was able to read the whole thing which was very hard. Everyone was crying.
On October 25, 1995, just eight years ago yesterday, my son Henry was born. Two weeks later, he was diagnosed with Fanconi anemia, a disease that threatened to take his life, and challenged us to live well despite it. And live well, we did.
Henry embraced each opportunity for living completely and reminded the rest of us to do so. His sparkly eyes, mischievous grin and infectious smile was a call to action to smile back, laugh along, and dance with him. Instead of associating each doctor with one who inflicts pain, Henry had a special nickname for each. Dr. Gillio became Dr. Silly-o; Dr. Wagner became “Dr. Have you Wagged Your Tail Lately?” Henry didn’t associate hospitals with procedures, but rather, by their proximity to the things that he loved to do. So, trips to hospitals in or near New York didn’t mean bone marrow biopsies and surgeries, but rather opportunities to ride the black panther on the carousel in Central Park or to go to Joker’s Child, the best Batman store ever; Minneapolis was not about Henry’s seemingly endless transplant-related hospitalizations, but was synonymous with the Mall of America.
Despite the relentless wrath of his disease, Henry had the physical and emotional strength to fight back. His ear-to-ear smile and joyous laughter were far more noticeable than his many surgical scars and low-platelet related bruises. He suffered plenty of setbacks and spent more nights in the hospital fighting against whatever Fanconi anemia would throw his way, but just when it looked like the disease was too tough of an opponent, Henry would rise like a phoenix from the ashes and get back to the life he chose to lead. He would transition from the hospital to running a lemonade stand in a matter of minutes; from the intensive care unit to hitting a baseball over our neighbor’s fence.
Henry was a superb athlete. By age three, he could traverse the monkey bars over and over again, triggering disbelief from other parents and envy from their children. Just days prior to departing for Minneapolis for his transplant, Henry scored the winning goal of the Dolphins’ season closing soccer game. He secured a punching bag and boxing gloves in his transplant isolation room to help regain his strength while he recovered from the negative effects of the radiation and chemotherapy. Once he was discharged from the hospital, Henry asked us to get a karate instructor so he could begin working on his white belt basics. The power of the chemotherapy was apparent by Henry’s bald head, but it was powerless against his determination to master new skills, build his strength and defeat Fanconi anemia.
With each blood draw, blood transfusion or other medical treatment, Henry would grin and exclaim “Let’s just do it” so he could get out of the clinic and get back to living his life. Seven months after Henry’s transplant, we took him out in public for the very first time to the most “Henry” destination in Minneapolis, the Mall of America. As we walked past the indoor rock climbing wall, Henry got that look of determination in his eyes. With IV lines hanging out of his shirt and a protective mask on his face, Henry practiced numerous times on three separate occasions, first making it halfway, then two-thirds, over and over again. Finally the day before we were to leave Minneapolis, Henry wanted to go back and try one last time. He would settle for nothing short of victory. With a burst of energy, Henry made it all the way to the top and rang that buzzer symbolizing to everyone in Camp Snoopy that he made it. Fist in the air, he made his descent and once on land, did his hip shaking, ear-to-ear smiling, “oh yeah” dance.
During Henry’s bone marrow transplant recovery, he and Jack developed an assessment scale of Henry’s health status that ranged from “Not Good” to “Super, Duper Better.” Every day, Henry worked towards Super Better. He possessed a level of patience that eludes me, and thankfully, was willing to suffer through plenty of Not Good Days, recognizing them as a necessary means to an end. He stayed focused on the end game of Super, Duper Better, settling for moments or hours of great times here and there, as he worked hard for it to become his way of life.
Henry taught his friends how to negotiate the monkey bars and hit a waffle ball across our street, and shared his encyclopedic knowledge of everything Batman and Pokemon. As he got older, Henry’s lessons went beyond the typical little boy stuff. At a school assembly, his fellow first-graders shared what they had learned from Henry, ranging from teaching them all about whales and nature; to basic truths including to love super heroes and brothers, to smile a lot, and my favorite, “to take a good nap when we need one.”
For adults, Henry was a walking motivational speaker. Despite the adversity he faced, he never felt sorry for himself. His positive attitude and courage inspired people to be and do better, and as a result, thousands joined the National Bone Marrow Registry, collectively donated money to support research into Fanconi anemia, and noticed things about their children and themselves that they may otherwise have overlooked. Henry had an ability to enjoy all the enjoyable things in life, even when they were sorely outnumbered by the hardships, and he taught those around him to do the same.
One of Henry’s doctors described him as a 30 year-old trapped in a child’s body. He was so mature that he was asked to present to a group of medical students about how to care for pediatric patients. Henry often diagnosed his own ailments, flushed his own IV lines and told us when he needed to be checked into the hospital and when he was well enough to leave and head for the beach. He was honest and open and wise beyond his years, but possessed the innocence and playfulness of a child.
As you know, Henry was fascinated with Batman. Like Batman, Henry’s special powers were his strength and intelligence which he developed through hard work and training. While Batman faced numerous adversaries including the Joker, Ra’s al Ghul, Riddler, Two-Face, and Poison Ivy; Henry faced only one, Fanconi anemia. Batman had Robin; Henry had Jack, Joe, Allen, me and thousands of friends and admirers willing to join his troupe of superheroes and fight for his life.
Perhaps even more than Batman, Henry was a master of illusion. He made everyone believe that anything was possible. The only thing that seemed impossible was that inside his beautiful body, every single cell possessed a genetic defect so deadly that one day he could die.
On December 11, 2002, nearly one year ago, the impossible happened. Fanconi anemia took our son, Jack and Joe’s brother, and your friend away. The fact that every picture has been taken, every word has been spoken and that I will never again be able to hold my son’s hand or read him a bedtime story and kiss him goodnight is close to unbearable. But my broken heart is restored by the feeling of incredible good fortune that I got to be Henry’s mother.
The impact of Henry’s life astounds me. I think he did more in his short life than most do in eight or nine decades. One of Henry’s doctors, Dr. John Wagner, recently told me that Henry taught him things that will unequivocally help other children with FA facing transplant today and tomorrow. He said, “Every survivor at some point must thank their lucky stars that one of them happened to be Henry.”
The day Henry died, I got the following note from my dear friend Sharon Harari in Tel Aviv. Her son Amitai has Fanconi anemia. Allen and I met them in New York and introduced them to the doctors working with us on preimplantation genetic diagnosis.
The night Henry died, I had this feeling just like I did on the millenium night. In my head I knew that after midnight our lives would continue just as they did, but my gut felt like the world might be coming to an end.
If it wasn't for Henry we would have never met you. If it wasn't for you we would have never made it through preimplantation genetic diagnosis. If it wasn't for PGD we would have never had Alma. If it wasn't for Alma Amitai would probably be dead today.
We believe Henry saved our son's life.
And, just a couple of months ago, Allen and I received this letter:
Dear Allen and Laurie,
I don't think you know me but boy I sure know you and Henry. I have been struggling with the right time to write this letter. I am the father of Hunter Kelley. Hunter too has Fanconi anemia.
For a year and a half we searched for answers as to how to help Hunter. In 2001 we learned that PGD was now available to FA (A) patients. It was about this time my wife (Christie) read your New York Times Magazine article. We immediately decided we had to give PGD a try. After 4 cycles and many ups and downs we got pregnant.
Eggs were implanted on Easter Sunday of 2002, and on Dec. 9th, Cooper Kelley was born. A perfect match for Hunter. On January 21 Hunter underwent a Sibling Matched Cord Blood Transplant at University of Minnesota. Today we are back in Birmingham and Hunter is outside shooting basketball.
The reason for writing this letter is to thank you and especially thank Henry. You see if we had never read that NY Times article we would have never tried PGD. Hunter was to the point he needed a transplant and we didn't have long. Your determination to succeed at PGD gave us inspiration.
Henry did not die in vain. Henry is a pioneer who has and is saving lives everyday. I can only imagine what it is like to lose a son. Hopefully you can find some comfort in knowing without a doubt you and your son helped save our son's life.
Thanks Henry Goldberg, your sacrifice has saved many.
Henry, you always said you wanted to be a superhero when you grew up. Your wish came true.