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Archive for January, 2010

Sunday, January 31, 2010

Wish Maker

My husband Allen is a lot of things. He’s loving, smart, attentive, trustworthy, well-read, laid-back. He pays attention to the kids’ and my interests. He makes us feel special. It isn’t uncommon for him to come home and exclaim, “Hey (fill in the blank), I have a surprise for you!” That surprise could be ACDC tickets for Jack, the new Patty Griffin or Lucinda Williams or Todd Snider CD for me, or Washington Capitals tickets for Joe.

Every once in awhile, the surprise elevates Allen from awesome dad to wish maker.

That’s what happened yesterday.

Our son Joe is a sports-obsessed eight year-old. Among his favorites is ice hockey. Joe loves the Washington Capitals, especially Alexander Ovechkin. He watches every game, thanks to DVR technology, at least twice. Nearly every day when Joe gets home from school, in a search for his homework in his backpack, I find notes written in thick red marker all capitalized, “Let’s go Caps. Caps Rock! Alex the Gr8!” Joe especially loves what Ovechkin does whenever he scores a goal, which is Joe-pleasingly often. He kisses his hand and sends it up heavenward to his older brother Sergei. “I’m going to do that when I’m a famous baseball player one day,” Joe confided to me. “I’m going to kiss my hand and send it up to Henry.”

Joe really, really, really wants to meet Alex Ovechkin. He goes early to the game in the hopes that he can get a puck from Ovechkin before the game starts. He went to Capitals Convention (a.k.a. heaven for Caps fans) last year and searched everywhere for his hero. Joe keeps a lookout for Ovechkin’s totally awesome car whenever we drive by his house on our way to our friends Bill and Cristina’s house.

On Friday, we went to the Caps game where we witnessed their ninth-straight victory, making it their second longest streak in franchise history. When we got home, Allen said, “Hey Joe, I have a surprise for you! You gotta trust me on this. It’s gonna be great.” Despite a continuous request for more information, Allen refused to divulge the secret.

Cars were skidding across the road into ditches as Allen, Joe and I made our way down Georgetown Pike to Dulles Town Center yesterday as the 6th inch of snow that day fell on and around us. We were undeterred. “Where are we going?” Joe asked. “I don’t know,” Allen and I answered in synch. “I bet it has to do with hockey,” hoped Joe.

We walked into the mall. All around with jersey-wearing fans. Joe’s face broke out into a smile as he spotted Ovechkin’s father who he recognized from all the games. “Dad, let’s go meet him,” said Joe.

Ten minutes later they returned. “We’re friends with him now,” Joe explained. “He touched my muscles and told me to eat and get strong.”

Two complaint-free hours later, Joe shook hands with his hero, just like Henry had with Cal Ripken 10 years earlier.

“That was the best surprise ever,” Joe confirmed as we headed back home to watch Friday night’s game yet again.



Saturday, January 30, 2010

As Strong as the Weakest Link

The woman in the chair anxiously clutched her plane ticket. Next to her in the bright and airy atrium of Georgetown University Hospital’s Lombardi Cancer Center were two suitcases. One was black and rectangular, indistinguishable from all the others I regularly see on baggage claim conveyor belts at airports around the country. The other brought tears to my eyes. It was a blue canvas bag with yellow bold type, “National Marrow Donor Program.”

I thought back to the day in July 2000, when I sat by Henry’s bedside in unit 5A – the pediatric bone marrow transplant unit – at University of Minnesota Children’s Hospital. Henry and I were playing with Pokemon figurines and watching Pokemon movies and talking about how cool Pokemon are as we waited for the arrival of the bag of stem cells that held the promise of saving Henry’s life. Because the National Marrow Donor Program requires that the donor and beneficiary do not have the opportunity to know one another’s identity until one year after transplant, we had no idea who the donor was or where in the world she lived.

In between Pokemon battles and unbeknownst to Henry, throughout the day I had been frantically checking the weather in major cities across America and the world, hoping that a storm wouldn’t prevent the cells’ arrival. I imagined a young man couriering those cells from some remote, stormy location far away, running through airports barely making it onto planes, all in the service of saving my boy’s life.  I remembered the words of my college rowing coach, “You’re only as good as your weakest link.” I hoped the guy with the cells would beg his way onto the plane, get to the front of the taxi cab line, and arrive in time.

One year after Henry’s transplant, we signed the required releases enabling Henry to meet his donor. Allen and Henry traveled to Minneapolis for a check-up, batting practice with the Minnesota Twins, and the opportunity to say thank you to the generous woman who had given us yet another year with Henry. Seven months pregnant with our son Joe, I stayed home in Washington, DC with Jack. It was easy for Allen and Henry to meet the donor in Minnesota because that is where she lived. She did not donate her stem cells in Dublin, Ireland or Tel Aviv, Israel, or even in New York City. She donated them at the very same hospital where Henry was waiting for them. In fact, she was in a room just down the hallway. There is much to tell about Henry’s donor but I think I’ll save that for a guest post by Allen since he had the good fortune of meeting her.

My mind was overfull with thoughts of July 6, 2000, when our world was filled with promise, as I walked past the woman at Lombardi into a planning meeting for a Georgetown Hospital-hosted book party for Saving Henry where I could thank all the doctors, nurses, and others who did everything they could to save Henry’s life. I don’t know the identity of the beneficiary of the bag of hope that was about to be placed into the National Marrow Donor Program carrying case, but if I did, I would tell him or her with certainty that the woman transporting it is a strong link in the chain.

Wednesday, January 20, 2010

Learning to Read

Like a lot of kids in preschool, my son Joe’s bedtime ritual included reading. Unlike lots of kids his age, Joe only wanted to read the stats on baseball cards. In the beginning, I would read them to him. As time went on and he mastered numbers, I would read the category, RBI or Runs Batted In for example, and Joe would read the associated number. He especially liked reading the number of hits by stars of the New York Yankees, especially Derek Jeter’s 206 hits in 2007.

Every once in awhile I would suggest that we add – not substitute, mind you -  a Dr. Seuss book or a classic like Maurice Sendak’s Where the Wild Things Are to our routine, but Joe wanted none of it. He was all baseball, all the time.

By the time Joe got to kindergarten, he was willing to mix it up a bit. He added entire books with player stats and even a few that featured the bios of the greatest-yet baseball and hockey players. I would read the words; he’d cover all the numbers. He was really good at reading numbers.

A couple of years went by and Joe advanced to the second grade where he is now perfecting his reading and math skills. Through the grapevine he learned about the Diary of a Wimpy Kid series. Earlier this fall, Joe wandered into Jack’s room – a dreamy, yet forbidden den of books on science and rock and roll; with some cool guitars, a computer, and the allure of everything older brother. He grabbed the Wimpy Kids books off Jack’s shelf and made it out before being discovered and banished, not for the first time. That night, Joe and I lay in his bed and switched off reading paragraphs. My boy could read. He could also count the number of letters in all the big words he read.

One day in the fall of 2009, Joe picked up a draft of Saving Henry. I was working on my final edits. As you will see when you read the book, each chapter starts with a list of some of Henry’s favorite things. Joe sat on the couch reading and turning pages. “Mom,” he said, “Where am I?” Joe was just one when Henry died so his birth comes near the end of the book. “Keep looking,” I responded knowingly. The list that precedes Chapter 16 begins with “Making Funny Faces at Joe.” When Joe was a baby, Henry loved holding him and making him laugh. Henry discovered quickly that the best and fastest route to a string of happiness-producing giggles was by scrunching up his nose, wiggling his lips, and sticking out his tongue. Henry used to do it over and over again to Joe’s delight.

“I want it to just say Joe,” Joe said. “One of the lists just says Jack.”

“He loved you so much, Joe,” I clarified. “If you want, I would be happy to change it to just say “Joe.” In my writing, I had thought that “Making Funny Faces at Joe” and just “Joe” were the same thing as they exemplified a single source of true love for his oldest brother.

“Don’t change it mom,” Joe clarified. “Just add another one that says Joe. Because he loved me and he loved making funny faces at me.”

Now that was a good – and very important – catch by my youngest editor.

Wednesday, January 13, 2010

Three’s A Charm

Thankfully it is too soon to tell whether (at least in my case) this is myth or legend, but some time ago I heard that if you introduce three couples who eventually marry, then you get to go to heaven. With the marriages of Jody Costilo to Michael Gan, my sister Abby Strongin to Andy Cherner, and my cousin Catherine Kreindler to Tim Levy, my prospects for the afterlife are looking pretty good.

This past year, a hat-trick of another sort happened and it has me wondering. If not one, not two, but three people are named after you, what’s the reckoning?

It all started in July 2007 with the birth of Max Henry Winaker.  His father Jeremy explained, “We’ve been waiting for a boy. We wanted you to know as we honor your Henry’s gift to us and the world.” Jeremy, a rabbi, met his wife Ali Mendelson, one of Henry’s doctors, at Henry’s funeral. Two years later, Allen and I attended their wedding. http://bit.ly/7dpwe5

In mid-2009, Henry Clark Dunning Goldblatt was born to two superhero-loving parents who thought it fitting to name him after a couple of superheroes they admired, our own Henry Goldberg and Clark Kent a.k.a. Superman.

More recently, our friends Matt and Sarah Brenner gave birth to a little boy. Matt explained, “In naming Henry, we also remember Henry Strongin Goldberg, the son of our friends Allen and Laurie and the toughest guy I ever met.  Henry faced overwhelming odds from birth, due to a rare disease that subjected him to medical challenges and procedures beyond anything that any of us can comprehend.  During his seven short but full years, Henry did not allow the disease to define him.  Instead, he showed constant strength and courage in facing any surgery or treatment thrown his way, all in a fierce and determined battle for what we all take for granted – living a normal life.  You only needed to meet him once to understand what it means to completely embrace life, from mixing it up with his brothers to idolizing Batman.   His gravestone quotes Harry Potter – The Boy Who Lived – and it could not be more apt.  In his short life, Henry taught that one must confront obstacles head on and appreciate all of life’s possibilities, particularly the routine that we take for granted.  For our son, we wish some measure of the strength and positivity Henry possessed.”

I may or may not be bound for heaven but I have no doubt that Henry is part of a fantastic troupe of superheroes engaged in some serious merry-making.

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Friday, January 8, 2010

Nightline Revisited

In February 2002 and again in December 2002, the night after Henry died, ABC News “Nightline” ran a beautiful piece about Henry and his valiant fight against Fanconi anemia. It is most certainly worth a watch.

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Monday, January 4, 2010

You Get the Picture

Allen rarely holds strong opinions that differ from mine so when he does, I pay attention. The first time this proved to be a wise strategy was related to the decision of where to send Henry to school. I favored sending him to my alma mater, Washington, DC’s prestigious (to the extent that a nursery school can be such a thing) National Child Research Center where 30 years earlier I stapled my brother Andrew’s thumb and met my first best friend Katie Hawke. Allen wanted Henry (and eventually Jack and Joe) to go to a Jewish preschool because, well, we’re Jewish, and also to give them sufficient instruction in Judaism to increase the probability that they would be mensches. We enrolled them in the Gan Hayeled Nursery School at our synagogue where each played with blocks, made beautiful art work and friends for life, and took a few sizable steps down the road to mensch-hood.

Allen was sure that Norman Jean Roy, a prominent, award-winning portrait photographer (think U2, Cate Blanchett, Katherine Heigl, Isla Fisher) would agree to take my Saving Henry publicity photos. We had met Norman and his beautiful inside-and-out girlfriend (now wife) Joanna in June 2001. They had traveled by car for about five hours from their home in New York City to Bethany Beach, DE where Henry, Jack, Allen and I were enjoying a day on the beach. Norman’s assignment was to take a photograph of Henry for a New York Times magazine cover story that Lisa Belkin had written about ours and the Nash families’ race against time to save our children. Norman’s photographs poignantly capture Henry’s incredible strength and indomitable spirit and the havoc that Fanconi anemia had wreaked on his body. Something magical happened on the beach that day. Norman and Joanna ended up getting engaged and then married. We got one of the last and only pictures of our family of five (Joe was five months in utero and I was most certainly showing). We formed a lasting bond unaffected by geographic distance or frequency of communication.

After Henry died, Norman sent us all the contact sheets from that day on the beach with a note instructing us to pick any and all that we liked. The photographs are displayed throughout our house.

When Hyperion bought the rights to Saving Henry, Allen felt strongly that Norman should and would take the publicity photos. I thought that Allen could take the picture. I did not think it would be as beautiful as the piece of work that Norman could create.

Norman is in demand. His breathtaking work is featured on the pages of Vogue, Vanity Fair and other top magazines. His photography book TRAFFIK, portraying Somaly Mam and other survivors of Cambodia’s sex trade, is stunning. So when Allen wrote to Norman this fall asking him if he would be willing to take my photograph, I thought Norman would simply be too busy to do it. I was wrong.

On October 30, 2009, Allen and I flew to Los Angeles, rented a car and drove to Norman’s studio on Sunset Boulevard. We spent hours with Norman and Joanna talking and remembering. They shared their heartbreak over the despicable human sex trade and their inspiring work with Somaly Mam to bring attention, and hopefully an end, to it. Allen and I shared a copy of Saving Henry. I let Norman see the depths of my joy and heartbreak which not surprisingly he captured beautifully in the photos.

Publicity PhotoPublicity Photo 2Publicity Photo 3

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Monday, January 4, 2010

Batman is the Best

Batman is the best as far as the Strongin/Goldbergs are concerned. Batman is the Best

As you probably know by now, Henry was fascinated, even obsessed, with Batman. He wore Batman costumes in sizes that grew with him, from infant to medium. He owned – and played with – hundreds of Batman action figures. He wore capes, utility belts, sneakers, watches. He watched movies, cartoons, and read comic books. Among the best days of Henry’s life was the day he met the real Batman.

Recognizing my dual love for Henry and all things Batman, Allen is ever on the lookout for new collectibles. This holiday season, he hit the jackpot. Entertainment Earth, which is a purveyor of amazing Batman goodies, advertised its Batman Cosbaby Mini-Figure Set, seven three-inch high, posable action figures including Batman, Robin, Batgirl, Two-Face, and the Joker.

New Batman Action Figures

The whole gang quickly moved from package to dresser display. Last night Joe asked me if he could sleep with the Batman and Robin figurines. He held them as we lay in his bed and explained, “Batman is the best. He is stronger and he has better protection on his chest, his head, and his wrists. He is my favorite.” Then he paused and added, “But Robin has cooler eyes because he wears eye black.” For those of you who are not baseball enthusiasts, eye black is grease worn below the eyes of baseball players to help reduce glare from sunlight or stadium lights. For Joe, an aspiring baseball player, this was clearly a plus.

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Sunday, January 3, 2010

25 Things You Don’t Know About Me

There are probably a whole lot of things you don’t know about me, including the fact that I’m a celebrity “news” junkie. For years, I would volunteer to do the family grocery shopping on Friday mornings so I could buy “US Weekly” fresh off the presses. Allen caught on so among last year’s birthday gifts was a subscription. There are so many things to read and learn, but one of my favorites is the page that highlights 25 things that before that day I did not know about Dolly Parton or Tim McGraw or whoever. While I might have guessed that Dolly Parton at one point had a crush on Johnny Cash, I had absolutely no idea that she still believes in Santa! I may not be a celebrity to anyone beyond my son Joe who upon seeing me on TV exclaimed, “I didn’t know you were famous!” but I thought I’d share my own list with you. Just in case you want to know.

  1. I trained for a marathon but have never run one.
  2. I hid my collection of Wacky Packages in my childhood home so well that even I never found them.
  3. I became a vegetarian when I was six (and still am one today) because my family owned a cattle farm and I thought it was wrong to eat our pets.
  4. I’m grateful for National Parks.
  5. I know all the lyrics to The Sugar Hill Gang’s “Rapper’s Delight.”
  6. I took flying lessons in high school.
  7. I love Shrinky Dinks.
  8. I believe there is always room for one more.
  9. I love eating in diners.
  10. I always have a Plan B.
  11. Sometimes I go to the movies just for the Sno-Caps.
  12. I have a long list of covers I would perform if or when I become a rock star.
  13. When and if I ever “make it,” I want to open up a nail salon/cocktail lounge called “Get Nailed.”
  14. I’m afraid of dogs.
  15. I love sunsets on the beach.
  16. I never pack the right things.
  17. I find most of our art work in flea markets.
  18. I’d walk miles just for a piece of Godiva chocolate, especially if it had hazelnut in it.
  19. I won a dance contest in 7th grade and was given the choice of the following prizes: Barry Manilow “One Voice” featuring the song “Ships” and Led Zeppelin’s eponymous debut. And I chose Barry Manilow. (I hope Jack doesn’t see this.)
  20. I think Batman is the coolest superhero by far.
  21. My goal in 10 years is to own an Airstream Trailer and to go on a year-long road trip with Allen and the boys if they are up for joining.
  22. I do not have a green thumb.
  23. I believe strongly in retail therapy.
  24. I love finding sand dollars.
  25. I still feel lucky.
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Sunday, January 3, 2010

Soundtrack

For some people, smells evoke strong memories. If I ever come upon the scent of stuffed cabbage, I will instantly be transported to my Nan’s 3rd floor apartment in Sunrise Lakes, just outside of Fort Lauderdale, Florida. Decked out in a colorful cotton house coat and white pleather slip-ons, my Nan had her hair and nails done every week. She was beautiful. I used to look forward to seeing her all year long.

I couldn’t wait to go to the flea markets with her to find small glass animals for our collections, or wool for a new sweater she wanted to knit for me or my siblings. My vegetarianism used to drive her crazy. “Broccoli and pineapple? What kind of a dinner is that? Skin and bones that’s what you are.” Nan insisted that the grass in Florida was poison; and that you could die from eating raw cookie dough. I thought she was zany and funny and often didn’t know what the heck she was talking about. But I loved her like crazy.

But I diverge.

As you can probably observe from the diet referenced above, I’m not much of a foodie. It is music that really affects me. Here is a piece that I wrote for an early version of Saving Henry, some of which made it into the final book.

It wasn’t just the rainbow on the cover art, which matched the one on my bed sheets and comforter, and was painted across two walls of my childhood bedroom, or the big, bold bubble letters, which I had recently become proficient at writing, that led me to purchase “Magical Mystery Tour.” It was that it was the mid-70s and, despite the fact that they had broken up, the Beatles were still so cool.

I held that album, my first, close to my chest, its sides buried in the notches of my elbows, all the way home from Brentano’s record store in Chevy Chase, MD. I put it on the turntable in our family room, lay with my back to the floor, closed my eyes, and listened to it over and over again. With that, my mind wandered from the comforts of my suburban life to the unknown excitement of a world I had yet to contemplate, let alone discover. I had no clue what or where Penny Lane was, or what “I Am the Walrus” was all about–I just knew that rock ‘n roll opened my mind to things I had never before imagined. Within days, I was back at Brentano’s, adding “Abbey Road” and “Sgt. Pepper’s Lonely Hearts Club Band” to my collection.

In addition to learning the blessings and my torah portion for my bat mitzvah in 1978, my preparation for the party consisted of a trip to Peaches Record Store in Rockville, where I stocked up on Commodores and Earth, Wind and Fire LPs, nearly guaranteeing an awesome dance party to go along with the six-foot sub in the basement that had been newly fitted with orange linoleum floor tiles.  By the time I made it to Ann Arbor, Michigan for college in the fall of 1983, my love of music led me to don a hairnet in the University of Michigan West Quad cafeteria to finance my weekly purchases of Elvis Costello, REM, U2, The Clash, and other 1980s phenoms at Schoolkids’ Records. Each new artist and new album opened my mind a little wider. With keys and the title to a previously-owned Toyota Tercel, I could go on road trips to Bruce Springsteen, Elvis Costello, Billy Bragg and U2 concerts, listen to whatever I wanted to on my tape deck, and dream.

The 1980s and 90s were the eras of the mix tape. I captured some of the best dance tunes–from The Brothers Johnson’s “Strawberry Letter 23” to The Bar-Kays “Holy Ghost “ to Elvis Costello’s “Mystery Dance” and The Talking Head’s “Burning Down the House” on the multi-part Sly Eu’s Party Crib dance tapes that drew throngs to the dance floor of my Ann Arbor group house. Each April brought a birthday mix, and December was marked with an end of the year “Best Of” mix tape, whose criteria was that the songs were my favorite that year, regardless of when they were released. That explains how Ryan Adams’ “When Stars Go Blue” or The Gourds’ “Gin and Juice” made it on the Best of 2003.

From the beginning my boyfriends knew that music was the key to my heart. When my boyfriend Matt Eskey made me a birthday mix tape in April 1986 which included an original recording of Jerry Lee Lewis’ “Great Balls of Fire” on which Matt performed the vocals and piano and customized the ending with the Beatles’ line “In the end the love you take is equal to the love you make,” I thought I was the luckiest girl in the world.

I knew I’d met my match when Allen popped the specially-prepared “Laurie Will You Marry Me” mix tape into the tape deck on October 26, 1992. Side A, “Please Say Yes,” featured Bruce Springsteen’s “I Wanna Marry You” and The Platter’s “With this Ring” among others. Side B, titled “Baby I Can’t Wait!” continued the theme with Rickie Lee Jones’ “It Must Be Love” and Frank Sinatra’s “Love and Marriage.” He had me at mix tape. A recent Valentine’s Day mix featured Lucinda Williams’ “I Just Want to See You So Bad,” Bob Dylan’s “I Want You,” Springsteen’s “She’s the One” live, and Van Morrison’s “You’re My Woman.” Allen knows how to woo a girl.

For some people it’s food, but for me all it takes is a few bars into a song to transport me. Whenever I hear “The Lion Sleeps Tonight,” which isn’t often, I’m back at Wolf Trap, giggling under a blanket with my brother and sister as one of my parents’ friends competes with Pete Seeger by singing “a-weema-weh” at the top of her lungs.  John Denver’s “Rocky Mountain High” takes me to the Blue Ridge Mountains of Virginia, where my family spent many weekends camping, singing, and skinny dipping with the group of families that shaped my childhood. When I hear The Who’s “Baba O’Reilly” I’m on the battlefields of Gettysburg where my 10th grade class spent a few days learning about the Civil War and how to kiss. “Always and Forever” by Heatwave takes me back to the same family room on Beechwood Drive in Chevy Chase, MD, where I first listened to “Magical Mystery Tour,” but this time my boyfriend Larry and I are slow dancing for hours and hours, powered by first love. Grandmaster Melle Mel & the Furious Five’s “White Lines” takes me to The Bagel Factory, a restaurant I managed in Ann Arbor, where, after the restaurant closed, my future sister-in-law Tracey and my roommate Jane and I mopped the floors and did the dishes. When I hear anything on U2’s “Rattle and Hum,” it’s all about me and Allen.

By the time Henry was born, mix CDs had replaced mix tapes, but the effect was the same. Among the things Henry inherited from us was a love of music. Henry’s first playlist featured two songs often played on repeat: The ever popular “Twinkle, Twinkle Little Star,” and Carole King’s “Pierre.” A few notes into “Twinkle, Twinkle” and I’m instantly transported to Captiva, Florida. It is December 1997, right around the time I took my first shot of Lupron, and I’m in the car with Henry, Jack, Allen, and my parents, also known as Nana and Papa Sy. Henry started singing one of his favorite songs:

“Twinkle, twinkle, little star,

How I wonder what you are.

Up above the world so high,

Like a diamond in the sky.

Twinkle, twinkle, little star….”

Over and over again he sang. About five minutes into it, Allen, my parents and I started laughing hysterically. Eventually Henry caught on–the song would never end.  He was singing and laughing until the laughter won out and the song faded away. For now.

When Henry was three, we bought him his first boxed set, the four-volume “Nutshell Library” by Maurice Sendak, and the CD that accompanied it, Carole King’s “Really Rosie.” Bedtime featured “Pierre,” Henry’s favorite. Allen and I would lie in Henry’s bed, singing the story with Henry as he turned the pages. We all yelled “I don’t care!” as loud as we could along with Pierre and Carole. Well after we hugged him, exchanged butterfly kisses with a flutter of our eyelashes on one another’s cheeks, and left his room, we would hear Henry shouting “I don’t care!” until there was silence.

Henry’s friend Simon introduced Henry to yet another favorite song on the way home from a play date. “Homemade Lemonade” by Tom Chapin is an ode to the tasty superiority of the fresh squeezed, straight-from-trees variety and the financial return associated with one of childhood’s biggest pleasures, the lemonade stand. Henry’s first lemonade stand, which he managed with the help of Jack and his friend Jacob, featured a homemade blend and fresh-from-the-oven chocolate chip cookies. Advertised at 25 cents per cup and per cookie, the boys often got paid more. Over the years, I have noticed that there seems to be a correlation between the number of letters written backwards on lemonade stand signs, and overpayment for the product. The elder of the crowd and originator of the idea, four-year-old Henry manned the table while Jack and Jacob ran up and down our street recruiting customers.  “Lemonade for 25 cents… or if you don’t have any money, it’s free,” yelled Jack. A couple of hours later, the kids had divided up all the money (Jack was not penalized for his socialist ways) and we went to celebrate their commercial success with ice cream cones at Max’s Ice Cream in our neighborhood.

“Homemade Lemonade” was but one of a whole category of food and drink-related songs that Henry liked. He learned to spell a couple of new words through his repetitive listening to Todd Snider’s “Beer Run” which goes like this: “B-double E double R U-N beer run. B-double E double R U-N beer run. All we need is a ten and five-er, a car and key and a sober driver. B-double E double R U-N beer run.” Some people may find these lyrics to be inappropriate for a six year-old, but at the time our concerns were focused on life or death issues – and besides, the song rocks. That is the same reason that I was not horrified when Henry returned from a pancake breakfast with my college friend Mark, exclaiming, “Mommy, Mommy, I got to sit in the front.” Mark wanted Henry to have the benefit of close proximity to the speaker as he blasted Bob Seeger. As you can guess, Mark didn’t have kids yet, but, with the death his own brother, he had had his own heartbreak and with it, the benefit of a life experience that taught him to seize the day. Henry liked Bob Seeger, but he loved the front seat.

Henry liked songs like “Krusty Krab Pizza” and “Ripped Pants” featured on SpongeBob SquarePants, “If I Had a Million Dollars” by the Bare Naked Ladies, and “Pierre” because they are funny. He liked “Brick House,” “Out of Habit” by BR-549, and Smashmouth’s “All Star” because he could sing them while swinging his hips and dancing. He liked the songs written especially for him, “Henry You’re Our Superhero” by Caron Dale, the music teacher at his pre-school, and “Dance with Henry “ by the Songs of Love Foundation because…well, they were about him. When Jack was younger, he liked Aretha Franklin’s “Hit the Road, Jack,” and Joe, our third child, still likes Jimi Hendrix’ “Hey, Joe” for the same reason.

Now, at age 13, Jack listens to AC/DC, Aerosmith, Jimi Hendrix, and Cream, favoring songs with awesome guitar jams. Joe, just eight, prefers hip hop stars like Lil Wayne, T-Pain, and Jay-Z. Since he has a long life ahead, we buy the “clean” versions on iTunes.

In the final weeks of 2002, when Henry and the rest of us were stuck in the hospital in Minneapolis, Allen brought some new music and with it, new cheer into Henry’s room, compliments of Dan Zanes’ “Night Time!” With songs like “Smile Smile Smile,” about how just thinking of a special someone makes you smile; and “Firefly,” about how those little bugs bring the magic of summer to the air; and “Side by Side” about how none of the bad things much matter whenever we’re together; it was as if Dan Zanes wrote the whole album with Henry in mind. Dan Zanes calls it “night time music, firefly music, shadow music, rainstorm music, bat music, streetlight music, dinner music, moon and stars music, flashlight music, or dream music.” I call it “Henry music”–and whenever I hear it, I cry.

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Saturday, January 2, 2010

My Favorite Things

The list of Henry’s favorite things was originally created on December 9, 2002, to remind Henry – who was in the Pediatric Intensive Care Unit at University of Minnesota Children’s Hospital – why he needed to be strong and get better. Allen read each item aloud, beginning with Mommy; his girlfriend Bella; small, shiny objects. The list grew by the hour. Henry’s desperate condition worsened by the moment. Within a day, the list transformed into Allen’s and my desperate attempt to remember everything important to Henry. Everything that made him special. Everything that made him Henry. As he lay dying, among the many horrors we faced was the fear that we might forget something, anything.

The list has continued to grow over the past seven years and much of it appears in Saving Henry. If you read it, you will know almost everything there is to know about Henry. You will know that he loved life, family, friends, fun, big things, little things, things that can only happen in the winter, and other things that require warmth and sunshine.

I keep a list of favorite things too. It brings back memories. It gives me things to look forward to. It makes me happy. Here is a peek.

  • Going to live music shows with Allen, particularly Todd Snider, Lucinda Williams and Kasey Chambers
  • When Jack discovers some great music and shares it with me
  • Playing cards with Joe
  • Looking for sand dollars in the waters of Captiva, Florida with Henry, Jack and now Joe
  • The smell of fresh coffee in the morning
  • Candy stores, especially if they sell Pop Rocks chocolate bars and red shoestring licorice
  • Cocktails on the beach
  • Right after I’ve completed a long run (but definitely not during)
  • Camp fires, especially with smores
  • Seeing endangered species in the wild like manatees and bald eagles
  • Ceasefires
  • Cozy cashmere throws
  • When someone shares a new-to-me picture of Henry
  • Wearing slippers
  • The first big snow of the year
  • Nearly anything made of potatoes
  • Seeing butterflies in my garden
  • Great finds at flea markets
  • Eating at diners
  • Allen’s dimples
  • Jack and Joe’s long hair
  • Boardwalks

Keep checking in. There’s more where all that came from.

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