Friday, December 13, 2002

let's go get it over with
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 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.

I've been fortunate over the past year to have emailed back and forth with Cindy Bullens, an incredibly talented (though woefully underappreciated) artist who lost her daughter, Jessie Bullens-Crewe, to Hodgkin's disease at age 11 in 1996. Cindy is kind enough to go around the country and play fundraising benefits for families like ours, in addition to her normal touring schedule. Cindy's album, Somewhere Between Heaven and Earth, does two important things (for me, that is) it captures a parent's grief and it rocks, or should I say, RAWKS!, dude. Her lyrics and music transcend the treacly pap I fear dominates a lot of the grief and mourning space. I would recommend her music to anyone (not just those mourning the loss of a child), particularly this album and her newest, Neverland, which features a stellar supporting cast of Steve Earle, Emmylou Harris and Benmont Tench. I think Cindy's music is going to help Laurie and me a lot. One of Laurie's favorite movies of all-time is Grease, and I think it bodes well that Cindy wrote and performed a lot of the music for the film's soundtrack.

I've got this cranked, very loud, right now. Thanks Cindy.

Better Than I've Ever Been
…(People say) that I'll never be the same
That's true-no doubt
But I know more now what life is about

I laugh louder
Cry harder
Take less time to make up my mind and I
Think smarter
Go slower
I know what I want
And what I don't
I'll be better than I've ever been
Maybe I'll be better than I've ever been…

There's a curious freedom
Rising up from the dark
Some kind of strength I've never had

Though I'd trade it in a second
To have you back
I gotta try to make some good out of the bad.
Henry Goldberg, 7; Illness Led to Controversy

Friday, December 13, 2002; Page B08

Henry Strongin Goldberg, 7, whose parents' fight to save him using pioneering embryo research raised ethical questions and brought his case to national prominence, died of Fanconi anemia Dec. 12 at a hospital in Minneapolis.

Henry, who lived in Washington, was a student at Jewish Primary Day School in Silver Spring when he wasn't convalescing at Georgetown University Hospital.

Doctors in 1995 determined that he had the rare disorder, which causes bone marrow failure. Working with geneticist Mark Hughes, who later resigned from Georgetown because of his research, Henry's parents, Allen Goldberg and Laurie Strongin, produced test tube embryos in the hopes of conceiving a child without the anemia. That child's marrow would be used in a transplant.

Henry needed the transplant before the sibling could be born, and the procedure was performed at the Minneapolis hospital with marrow from an unrelated donor. However, the child of another family that worked with Hughes did receive a transplant of marrow from a sibling conceived for that purpose.

Some ethicists and antiabortion figures denounced the process attempted in Henry's case, saying it amounted to "harvesting" children. Others, including Henry's parents, argued forcefully for its potential to save lives and alleviate pain.

Henry's case was featured in the New York Times, on ABC's "Nightline" and on a family Web site. A "Nightline" producer described Henry as "an energetic, funny, scrappy, resilient little boy."

He had been a member of the Dolphins of the Stoddert Soccer League in Washington and had gone to preschool at Adas Israel Congregation in Washington.

Other survivors include two brothers, Jack and Joe, both of Washington; and his grandparents, Seymour and Patricia Strongin of Washington and Theodore Goldberg of Rockville.

© 2002 The Washington Post Company

I must have been gone longer than I thought. I couldn't figure out which way to turn the knob in the shower to get hot water. Standing in the shower I remember how often Henry liked to get in our shower and just stand there for what seemed like hours. Sometimes when he wasn't feeling so great we'd put a little stool in there for him to sit on. But he just liked to be in there with the warmest water falling over his body until his skin was "pruney." He was also always game for a kiss on the glass. I'd put my lips up to the shower door from the outside and he'd press his lips on the other side of the glass and we'd smooch.

I didn't get a "death notice" in the paper in time. If anyone wants to make a donation in Henry's memory to the Fanconi Anemia Research Fund, their address is

Fanconi Anemia Research Fund, Inc.
1801 Willamette Street, Suite 200
Eugene, Oregon 97401
Telephone: 1-541-687-4658
Fax: 1-541-687-0548