Moving On: Searching for a Word or a Simple Way For Parents to Say They've Lost a Child
By Jeffrey Zaslow
6 June 2002
D1
(Copyright (c) 2002, Dow Jones & Company, Inc.)

GERALDINE RHEINGOLD IS AN orphan, having lost her parents in the 1950s. She is also a widow; her husband died in 1978. But she is something else -- a parent who has lost a child -- and there is no simple word in our language to describe that. Mrs. Rheingold's daughter Didi died of pneumonia in 1949 at age eight. Though she has another child, for 53 years Mrs. Rheingold struggled to define herself after that tragedy. Now, at age 93, these are the 11 words she chooses: "I was a loving parent who no longer has that privilege."

If only our language offered one special word to encompass that mix of loss and love. Some grieving parents say they long for such a word, something they could say when asked, "Do you have any children?" They yearn for a word that honors their late child without inviting prying questions, a few syllables they could deliver quickly, without choking up. Surviving parents in growing numbers are talking about rewriting the language of grief. When Mrs. Rheingold's daughter died, there were no support groups to help her. Now, the organization Compassionate Friends (www.compassionatefriends.org) has almost 600 chapters -- triple the number it had in 1980 -- serving 300,000 parents who've lost children.

Still, words fail us. "Linguists say that words reflect how society thinks," says psychologist Bob Baugher, who leads grief workshops around the country. "Because there's no word for parents who've lost children, it shows how awkward we feel about them."

The English language has about 450,000 commonly used words, but more may be needed. What do you call someone who has lost a sibling or had a miscarriage? Or a gay person whose partner has died? Or an elderly person who has lost every friend and relative? So many heartaches can't be found in the dictionary.

Last year, Susan Giardina's only child, her 22-year-old daughter, died from a brain tumor. People often ask Ms. Giardina if she has children. "Answering, `I had a child who died' rips my heart out," she says. But replying that she has no children "would feel like a betrayal" of her daughter's life. "If I could say, `I'm a widow,' I wouldn't have to go into details."

Generations ago, when it was common to lose children to diseases, people had large families. Language researchers suspect that society didn't want to define parents by their loss. But families are smaller now, and the loss of one child leaves a void that can feel more cavernous.

Jeffrey Kacirk, author of "Forgotten English," has never come across a word for parents who've lost children. Neither has Mrs. Rheingold's son Howard, author of "They Have a Word For It," a book about words in other languages with no English equivalents. When I contacted him for insights on word derivations, he said I'd learn more from his mother. Indeed, Mrs. Rheingold welcomed the chance to talk.

From her home in Mill Valley, Calif., she told me that when her daughter died, Howard was 17 months old. "Minutes after my daughter died, my husband and I were crying terribly," she recalled. "We held hands across her bed and said, `We won't talk about her and how she died. We won't bring this sadness into our son's life.'"

They kept the vow for decades. Sometimes, they'd speak to each other about "the beautiful red-headed girl we lost." But to outsiders and their son, they said little.

Until she was 75, Mrs. Rheingold says, she dreamed about her daughter nightly, saying nothing to anyone in the morning. She is relieved that many parents today are more open about their losses. "It's so much healthier."

Now that parents are talking more, they're more aware of the shadings and inferences of language. Harriet Sarnoff Schiff lost her 10-year-old son, Robert, in 1968. For years, when people asked how many children she had, she'd often mention only her two living children. "Then I'd cross my fingers behind my back and think, `Oh Robbie, I'm not denying that you existed.'"

She wrote a book in 1977 titled "The Bereaved Parent," and some parents now use that phrase to describe themselves. But it doesn't work for Joyce Andrews of Houston. Her 36-year-old daughter took her own life in 1990. "I wish there was a word that did not say, `I am continuously sad,'" Ms. Andrews says. "As time passes, and your grief softens, you don't like to put that label on yourself."

David Pellegrin of Honolulu says losing his son has shown him "the profound limitations of words." He dislikes "closure." "People say it with a hint of impatience in their voices: `Have you reached closure yet?'" Surviving parents also are troubled by sentences that begin with "at least." "When people say, `At least you have another child,' it never helps," says Mr. Baugher, the grief educator. Wayne Loder of Milford, Mich., lost a son and daughter, ages five and eight, in a 1991 car accident. Among the useless comments people have made to him: "God wanted more flowers for his garden."

For surviving parents "finding the new normal" means making their own rules. For some, it helps to talk about their late children to every acquaintance. Others say that as long as their children are in their hearts, what they say out loud is less important.

My in-laws lost a son in 1982. He was 24, and just beginning a law career. "People who've lost children have a heightened awareness of everything," says my mother-in-law, Marilyn Margulis. "Words are sharper and more meaningful, because you're vulnerable and in pain."

She encourages grieving parents to forgive inappropriate comments and poor word choices. "People are clumsy and apprehensive," she says, "but whenever they extend their hands to you in sympathy, understand that what they're trying to say is, `I'm so sorry.'"

---
Words That Sting

Parents who've lost children often say they're uncomfortable when
others use these words:

WORD: Closure
MEANING: Suggests they can put the death behind them
WORD: Acceptance
MEANING: Parents can't "accept" such a loss
WORD: Heal
MEANING: Implies a cure is possible
WORD: Recovery
MEANING: Indicates a resolution

Dear Henry:

Here is a photo of us from Martha's Vineyard. We are right outside the carousel. it is one of the oldest in the country, if not the oldest.

Your favorite carousels, in no particular order, are:

The Carousel in Central Park, New York
The Dentzel Carousel, Glen Echo, Washington, DC
Flying Horses Carousel, Oak Bluff, Martha's Vineyard
Give Kids the World, outside Disney World, Florida
Camp Snoopy Carousel, Mall of America, Minnesota



Carousels = Henry smiles and giggles. I wish the rides didn't have to end.



I love you.

Dad

Dear Henry:

Mom made a a pile of stuffed animals and Beanie Babies that aren't getting attention from Jack or Joe. I found HeroBear!



I bought it for you at BigPlanet Comics in Bethesda. I was so excited because he had an "H" on his cape and I thought that it could stand for Henry and for HeroBear. I bought the comic book too, but it was written for older kids. I remember thinking that one day we'd pull it out again and it would be perfect for you.

HeroBear is now sitting next to our bed.

Love,

Dad

Dear Hen:

Jack went to see the Orioles play this weekend with David Lane and his grandparents.



Doesn't Jack look handsome.

I can't believe we all went to a game together last summer. They might build a baseball field near my office. We need a team here in Washington. It would have been nice to take you and Jack and Joe to a game after work or on the weekend. Me and my boys.

I love you, slugger.

Dad

Dear Henry:

Mom made it back okay. I've been looking at some old pictures of you and me.



I like this one.

Love,

Dad

Dear Henry:

Here is a neat coincidence. Last week I was feeling a little down during the day and I went on the Internet and started looking at Batman stuff. There was one website that sold Batman lava lamps. How cool. Well, guess who else started checking out Batman stuff last week. Jack. I came home from work that same night and Jack was watching one of our old Batman videos. He also had gone to Sullivan's and bought this totally awesome Batmobile. All of a sudden Batman was back after months of being gone from the house.

The reason Jack was able to buy the Batmobile is that he made $40 for being in a television commercial. Did I ever show you the McDonalds commercial I was in a few years ago. I hope you saw it. It was funny. I'll ask Mommy.

Mommy is coming back from St. Michaels tonight. Guess what. Aunt Alice and Uncle Peter bought a house there not too far from Papa Sy and Nana's house. I'll put some photos here after I visit. The sad thing is that their beach house is being sold.



Here are you and Uncle Peter at the beach. I have a lot of great memories of you from that house. Mommy and I have both said that we will never move from this house. We can't. I guess it is a way of holding on to you as best we can. I wonder if we'll always feel this way. I hope so. This is your home. You're here.

It's pouring out. I hope Mom is okay. I'm going to go call.

I love you Henry. Love, love, love, love, love, love!

Dad

Dear Henry:

I drove by Daniel's house this morning. I know you missed him a lot when you both left The Gan and went to different schools. When life became no fun for you, you talked a lot about Daniel and the good old days. You were so young to be nostalgic for the past. That is called "reminiscing." I do that in my own way. When life is really hard I think back to when life was easy. Sometimes I think about when I was in my twenties. Sometimes I think about the years before your transplant. I'm sure in a little while when I reminisce about when life was easy I will think back to the past seven years with you.

I had to drive by Daniel's house this morning because I needed to drop off Jack's blanket at Debbie Barr's house. Jack is out in St. Michaels with Mommy and Nana and Papa Sy. Debbie is going out to St. Michaels later today and will deliver Jack's blanket. I wonder when he'll grow out of that. Joe is a blanket fiend. Unlike you or Jack, Joe insists on bringing his blanket everywhere. I used to try to get him to leave it in his crib, but I get nowhere with that stubborn little brother of yours. He drags it with him everywhere. I don't know if Mom and I will have the strength to wean (that means to get him to gradually stop using it) him from his blanket and pacifier when the time comes.

I just talked to Mom on the phone. Jack is out fishing. I hope he catches something.

I am super sad these days. Mom keeps saying that we are moving from the shock of you dying to learning how to live without you. Normally when I think about you during the day either I cannot accept that you've died or I think that it is okay. Right now I all I think about is how it is not okay.

All I do is miss you. I feel like I am always on the verge of tears. I took Jack for a haircut this weekend at Bradley Barbershop. I sat with Joe in a chair across from Jack. Joe stood on my thighs and studied his face in the mirror behind us. I looked up and down the row at all of the little boys getting little boy haircuts. Their dads all watched them. I thought back to every haircut you ever got. I thought about the haircuts you had when your hair had fallen out a second time and you looked so scraggly. You fell out of the chair and the woman cutting you hair was very worried. I helped you back up. After a while you got settled in and before long you were beaming. I am angry that you had to look so beat up. I am sorry that you got old enough to know and care. I am so proud that you tried to not let it bother you. I pulled Joe close and buried my face in his stomach. Thank god for Joe. My shield.



Here is a picture of you getting your first-ever haircut. Robert has cut my hair for the past 18 years. I brought you to him right before your last day of kindergarten. I remember I was a little desperate to try to get you looking a little better because you had been through a rough spell.

I love you,

Dad

Dear Henry:

Speaking of courage changing the world...

A Miracle 'Baby Hope'
CBS News 48 Hours
July 11, 2003

Hunter Kelley, 7, is on pins and needles as he awaits the arrival of his new baby brother. His very life may depend on it. Correspondent Susan Spencer reports.

Randy and Christie Kelley of Birmingham, Ala., have just what they've always wanted - a houseful of boys. First came Taylor, then Hunter and finally Parker.

Everything seemed perfect until Hunter turned 5.

"He'd always been small, so we kind of questioned that," says Hunter's father, Randy. "And his blood counts were deteriorating."

At his annual check-up, routine tests showed Hunter's white and red blood cell counts were dangerously low. So doctors ran more tests.

The diagnosis? Fanconi anemia, a rare genetic disease in which the bone marrow fails to produce healthy blood cells, leading to infection, cancer and ultimately, death.

"Very rarely did children make it to adulthood," says Randy. "The average life span is between 8 years old and 12 years old. So it was pretty bleak."

When they married, the Kelleys had no reason at all to think that one, much less both of them, would carry the Fanconi gene.

So the Kelleys sought out Dr. John Wagner at the University of Minnesota, one of the few Fanconi experts in the country. "Most of the children who are left untreated will die of bone marrow failure," says Wagner. "For those that live long enough, they'll develop leukemia."

In fact, Wagner told the Kelleys the disease is so rare that Hunter was lucky his doctor even recognized it.

Now, a bone marrow transplant is the only answer. And Wagner would have done one two years ago if he had found a match. The best prospects for donors were brothers Taylor or Parker, but they were not Hunter's match.

The Kelleys then turned to a bone marrow registry, where the odds of a transplant succeeding were only 1 in 5.

"We still knew that the best chance of his survival was to have a sibling match," says Randy. "We found out there was a way to get one."

They decided to have another baby created in the lab from Christie's eggs and Randy's sperm - by only using embryos that had been genetically screened to be healthy and a perfect match for Hunter. The Kelleys knew this was a long shot. It had only worked for one family.

"We just need a baby that matched my blood so we can have help for me," says Hunter.

Meanwhile, Hunter looks good and seems to feel fine, but everyone is very aware that with his disease, time is a relentless enemy.

It's too risky to go to school given the risk of infection, so Hunter works with a tutor at home - waiting until his new brother arrives.

"We knew that it would not be easy, that the odds were against us," says Hunter's mother, Christie. "But we had to try."

In creating a made-to-order baby, nothing could be left to chance. The Kelleys turned to Andrew Toledo, an Atlanta infertility specialist now faced with a challenge - to produce a baby with the same blood and tissue type as Hunter.

Embryologists used a controversial and cutting-edge technique known as pre-implantation genetic diagnosis, or PGD, to select only embryos with just the right stuff.

But PGD makes some ethicists very nervous because it has implications well beyond just screening for disease. For example, the same technology would have let the Kelleys screen for a girl, or look for physical traits such as hair and eye color.

But the Kelleys had less than a 20 percent chance of producing a matched healthy embryo. They succeeded three times, but Christie couldn't get pregnant.

Insurance covered much of their cost, but many families aren't so lucky. "It's technology for people that can find the financial resources that will allow them to do it," says Wagner.

Finally, more than a year after Hunter's diagnosis and after six months of trying, both embryos took - disease free and perfect matches - twins. But early in the second trimester, the Kelleys lost one of the twins. They were left with one baby with a big responsibility.

"We call this our special baby," says Christie. "This baby is being sent here to us to help him get well."

Every detail of this delivery has been planned for months. And if all goes well, doctors will use blood from the baby's umbilical cord for Hunter's bone marrow transplant - a perfect match.

Cells from the cord should "take" and grow, giving Hunter a healthy new immune system.

Randy is taking no chances. He will hand deliver the blood 1,000 miles from Alabama to Minnesota to be processed for the procedure.

"This is one thing that's going to help save Hunter's life and I want to protect that with my life," says Randy.

During the delivery, Hunter stands at the interior door of the hospital room, waiting and seeming to understand the enormity of the moment. Cooper Graham Kelley is born, and it's clear that he's in perfect shape.

After the delivery, Randy delivers his precious cargo to the University of Minnesota Lab. The actual transplant won't happen for several weeks, but Cooper's perfectly matched blood will be waiting.

Now, it's Hunter's turn. Randy has set up an apartment in Minnesota, and he plans to keep up with his sales job at Kraft Foods via computer - while watching over his son.

The Kelleys won't be together for long. Once Hunter's treatment starts, brothers Taylor and Parker will have to go back to Alabama to stay with Christie's family.

Hunter will undergo a week of powerful drugs that will wipe out his damaged immune system, clearing a way for a healthy new one built with his baby brother's blood.

But it's a huge gamble. Hunter's immune system is about to be totally destroyed, leaving him defenseless against infection.

Randy also worries that this frightening experience will somehow change his son. "Will it kill his spirit," he asks. "Will he be the same cart-wheeling, baseball playing Hunter that I had before?"

Hunter celebrates his 8th birthday on the transplant ward soon after he begins chemotherapy - and the treatment has started to take a toll on him. Four days after his birthday, it's transplant day at last.

"This is the start of what we hope is a healthy life for Hunter," says Christie.

But the coming weeks will be difficult. Hunter's small body will have to adjust to both the drugs and the transplant. On Day 21, they will know if the gift of life from brother has helped save the other.

"He's going in for a bone marrow biopsy," says Randy. "Nervous for how Hunter's going to feel when he comes out of it."

With Hunter under anesthesia, Dr. Wagner takes a sample of bone marrow from his spine. The news is astonishing. The transplant worked - and worked so well that Hunter can now leave the hospital and be reunited with his brothers, family, neighbors and friends.

"We are by no means out of the woods," says Randy. "He can still get fever or infections, but we feel happy because we've come so far this quickly."

"The chances are in his favor that he will do well and be back to normal in the not-so-distant future," says Dr. Wagner.

© MMIII, CBS Broadcasting Inc. All Rights Reserved.

I posted this email on here back in May, but I'm putting it back up to show you again. It is really nice. They seem like a great family. I am betting Hunter is going to do really well. He and Cooper are both very special boys. Here is a photo of Hunter fishing.



From: "Kelley, Randy C"
To: "Lauriestrongin (E-mail)"
Subject: Thank you Henry
Date: Mon, 14 Apr 2003 10:21:22 -0500


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 FA. On March 15th 2000 Hunter was diagnosed.

I am not going to tell you the feeling because I think you already know. For a year and a half we searched for answers as to how to help Hunter. We attended a FA Family meeting in Sept. of 2000, mainly to meet Dr. Wagner. While at the meeting we learned for the first time about PGD. We had no idea this opportunity existed and soon found out it didn't' for us. In Oct. 2000 we went to U of Minn. for a bone marrow harvest, Hunter's cellularity at the time was 50%. During this visit we met the Nash's and even went to the Mall of America with them. We wanted so badly to try the PGD but it wasn't available to FA (A) at the time. In Oct. of 2001 we learned that FA (A) had been typed by Dr. Auerbach and 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. On Dec. 9th Cooper Kelley was born. A perfect match for Hunter. On January 21 Hunter underwent a Sibling Matched Cord Blood Transplant at the U of Minn. Today we are back in Birmingham and Hunter is outside shooting basketball. We realize he is by no means out of the woods, but to this point he is doing great.

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. You determination to succeed at PGD gave us inspiration.

Henry did not die in vain. Henry is a pioneer that has and is saving Lives everyday. I can only imagine what it is like to loose a son. Hopefully you can find some comfort in knowing without a doubt you and your son helped save our son's life.

The TV show 48 hrs. has followed our story from beginning to end. We are not sure when it will air, if ever. Hopefully it too will help someone see the light at the end of the tunnel.

Thanks Henry Goldberg your sacrifice has saved many.

Randy Kelley
CBM - Kraft Foods

You go boy!

Dad

Dear Henry:

Yesterday was a really full day. In the morning Joe and I went to the "Train Park" on Macomb Street. It was the first time I've been there since you died. I could see you climbing on all the equipment. I remember you running around on the field with all of your buddies. Those days after school let out and everyone went to the Train Park were the best. What I can't understand is how you died if you were so strong.

Here is a picture I took of the Macomb "Train" Park. If you look close you can see the train and the Cathedral, which is in the background.



At 11 am we had a big party. Jack was sad that we didn't have your transplant anniversary party last week so Mom whipped up a "Happy Summer" shindig. All of the cousins and a bunch of Jack's friends (and yours) came over for popcorn (we rented the machine from the Party Warehouse), cake and wild animals from the Catoctin Zoo. You'd think we had our fill with the possums, but no. We had a hedgehog, an Amazon parrot, an alligator, a bearded-dragon lizard, a chinchilla and a Burmese python. I am still very freaked out by the thought of anyone touching reptiles because the majority of them carry the salmonella bacteria.



My mind is still working like you are here and we need to protect you from infection. I wonder when I'll be able to relax about that. I am aware every time I share a drink or food with Joe or Jack. I cannot help but think about how we could not share the same glass or straw or anything with you. We didn't want to get you sick.

The party was a blast. Mom, of course, put together killer party bags. I told her she should start her own business, PartyBags.com. I bet one already exists, but Mom would be the best.

Later that day we brought Jack to Matthew's birthday party which was rock climbing. The indoor rock climbing "gym" was near the cemetery, so Mom and Joe and I came by to say hello to you. It was beautiful out. Strangely, it isn't very humid right now. It almost feels like summer in Minneapolis. We hung out with you for a while. The funny thing is that the cemetery is maybe the one place where we feel safe that Joe won't kill himself. Normally he tries his best to pull things down on him or jump off things or run into stuff. When we are out with you Joe has plenty of room to run around and not get hurt.

The Pokemon coin is still on your grave marker. I was glad about that. We tried to leave a stone but Joe picked it up and ran off. Silly kid. Such the little brother, right. When Mom put Joe back in the minivan I went back and placed the stone on your marker. I got on my knees and kissed the ground. The grass was very scratchy. Whenever you kissed me when I hadn't shaved you would say I was scratchy. Sorry about that.

It was super nice to see you. After we left your grave, Mom and I went and said hello to Grandma. On the way out we stopped and visited Allison Atlas. Her family helped us a lot when we were trying to find someone to donate new blood for you. Just like you, Allison died because they couldn't find anyone who was a close enough match. Mommy signed up to be a bone marrow donor when she heard that Allison needed new blood. That was 10 years ago. On Allison's grave it said, "Her courage changed the world." I hadn't cried up until then, but reading that on her headstone just got me going. It also said, "One Singular Sensation." That is a song from a Broadway musical that I am sure Allison must have really liked. It also describes her. I am glad we are putting, "The Boy Who Lived," on your headstone.

I love you sweet boy. Your courage also changed the world too.

Kisses,

Dad

Dear Henry:

Here is an update. Rachel bailed out, again. This is the second time she has come over for a sleepover and decides that she needs to go home.

Oh well, we tried.

Love,

Dad

Dear Henry:

I didn't write to you very much last week because I was going to bed very early. I had to wake up each morning a little after 5 am because I was going down to the Potomac river in Georgetown for sculling lessons. A scull is this teeny tiny boat and you need lessons to learn how to row it. I passed the beginners class and got a card that lets me rent sculls without an instructor.



I have this image in my mind of going out in both St. Michaels and Georgetown, and just being alone with my thoughts and the water. Right now my thoughts are all about not falling in so I have a long ways to go. I was looking for some books that might have a good Pokeball image for the headstone people and I came across this book on sculling. It seems I am not the only 40 year old who thought of this.



So Hen, check this out. We had a little excitement today worthy of the crocodile hunter, crikey.

Picture this. The other week we ripped out the cabinet in your bathroom to replace it with something nicer. I put the old cabinet out on the deck off the kitchen. I figured that I'd take it to the dump with some of the junk that we cleared from the basement. Well it seems that this abandoned, empty bathroom cabinet makes the ideal nesting place for possums.

Check out these little rippers.



I called the people who take care of rescuing wild animals in Washington, DC and they said they were too busy to come get the possums. They suggested we just relocate them ourselves. We asked David Lane if he wanted to help. He ran over, and we all set out for Glover Park, down at the end of 39th Street.



When we got there I tipped the cabinet over. When the doors swung open the wee blokes hit the ground and scampered off. The funny thing is that one headed not into the woods but into someone's backyard. Oh well, we tried.



Do you remember the possum that you and Mom and I watched that night outside the kitchen. These guys might have been her babies. I hope that everyone finds each other.

Rachel is sleeping over tonight. She is sleeping in your bed. Rachel brought a photo of Aunt Abby to keep her company. The red box is Jack's memory box of you filled with some of your things.



I better go help Mom get Rach and Jack to bed.

Good night.

Love,

Dad

Dear Henry:

I got very bummed out today at work. I was in a meeting with folks whose job it is to sign up people to donate new blood. They work for an organization called the National Marrow Donor Program. Dr. Wagner does a lot of stuff with them and he asked Mom if she wants to work with them, too.

Anyway, back to this meeting. The people were talking about some newspaper and magazine ads they were going to use to get people interested in donating new blood. They said the ad would be a photo of a family with a mommy and daddy and kids. In the photo one of the people's heads will be ripped out to show what happens when you can't find a match. When the person explained this I just smiled and didn't let anyone know how much it felt like I just got punched in the stomach. But boy that was awful to hear and to picture in my mind. I am glad that I can do stuff to help these people but sometimes I hear things that really hurt. You aren't supposed to be sad or cry at work so I wait until I get home.

I love you Henry.

Dad

Dear Henry:

This was taken by Norman at Uncle Peter and Aunt Alice's beach house. This captures the way I think about us better than anything I can write.



Love,

Dad

Dear Henry:

Happy anniversary of your transplant. July 6, 2000. That was going to fix everything, right. Every year we have a birthday party on the 6th to celebrate the start of your life anew. No cake today. Uh-oh, I am in our room but I am pretty sure I hear Jack crying in your room. Mom went to go check it out.

Just like last year we all went to Rehobeth Beach to Aunt Abby and Uncle Andy's house for the Fourth of July. Mom reminded me that last year you and I stayed behind at the house when everyone went down to the beach club for the festivities. That is where I always wanted to be, by your side. I went with everyone this time. It was a beautiful evening. The sunset took a long time. It was a gorgeous red sky - sailor's delight, correct. There was a slight breeze. Everyone went out to climb on the jetty. Fireworks were going off all over the beach. Mom spotted a dolphin swimming really close to shore.

It was the way it should be. So what did I do, I sat in the sand and wept. Mom came over and put her arm around my shoulders. I couldn't stop crying. Nobody noticed, which is good. I don't want Jack to get any more sad than he already is. He and the cousins ran around with glo-sticks. All of a sudden I remembered that I had bought a bunch of big fireworks before I left Washington and they were out in the parking lot. I went and got them and set everything up on the sand by the water's edge. I set one off after another and put on a good show. I was thinking of you when I bought them. I asked for whatever they had that were big and spectacular. I thought about how you loved the fireworks we set off on the dock at St. Michaels. You loved it.

I have a lot to write about the weekend. I'll continue tomorrow. Here are some pictures until then.



This photo is from last weekend in Annapolis. Jack's beautiful smile has disappeared since then. Here are pictures with the cousins.






Jack had a lot of fun hanging out with Michael. Michael even won a jackpot at Funland. He got 450 tickets from one quarter on one of the games. They have a cool machine that eats and counts your tickets. You get a receipt to use when picking out your prize.

Here are pictures of you and me at Funland on the helicopter ride. We sure had fun.





Mom's back. Jack was crying. He told her that he doesn't want to go back to camp. He doesn't understand why our family cannot be together during the day every day. He said he doesn't want to go back to the beach. It reminds him of you. Jack is trying to stop time. I have a lot to tell you about Jack. He is having a very rough time right now. Mom and I are going to pull together and make sure he gets through this okay. I think I told you that sometimes we feel like we failed you. We have to make sure we don't fail Jack.

I love you Henry.

Dad

Dear Henry:

Check this out. I am at my desk at work and Mom and Joe and Jack just got to the beach. Rehobeth is 110 miles away, but I am able to see them on my computer. There is a camera on top of Thrashers.



Does that car look familiar? I called Mommy on her cell phone and told her exactly where to stop the car so I could see them. Even though it is rainy and miserable, that car is always a sunny day. I am glad Mom has it.

The person helping Mommy get her book published is telling us that everyone who reads it love the way Mom writes. She is such a great writer. You are lucky to have her telling your story. I think they only have a few chapters to read, though. I don't know if Mommy has given them all of the parts about how happy our life was. Hard but happy, that's us. I think someone smart is going to publish this book because they understand how many more lives can be saved and how many people will live their lives better if they have the chance to read about you. They realize that just because things are hard or sad doesn't mean they won't be interesting or important or helpful. Just look at the smiles on Mom's face and my face and Jack's face and Joe's face. That is what people will have on their faces when they finish reading about you. There might be a few tears, sure, but that is part of everyones' lives. You are like our car in the picture, a smile through the tears.

Above all else, Mommy's book is a love story plain and simple. It is about the love Mommy has for you. There is a movie called Love Story, which starts with a voice saying something like, "What do you say about a 25 year old girl who dies." This book about you is the same thing. Mom is that voice. I saw a movie the other day on tv called, The Kid Stays in the Picture, about the man who made the movie Love Story. That movie saved his job and the studio where he worked because everyone went to see it. It was a big hit. Mom's book will be just like that.

I think that whoever decides to publish your book is going to be really surprised at how many important friends you and Mommy have who work for big magazines, newspapers and tv networks. It is all these friends who are going to make sure people know there is a book about you that people can buy and read. I'm going to do my part by getting Mom on XM radio. That will be easy. We have a channel that people listen to because a lot of important writers come by and talk about their books and read chapter. I am going to make sure that Jeffrey is on that channel whenever he finishes his book.

Okay, back to important things. I bet you are thinking right now about the Candy Kitchen, which is lit up in the photo behind the punch-buggy, and your favorite destination just two blocks down the boardwalk: Funland. I'll report back about Funland and the rest of the good times at the beach after I join Mommy and the guys at Aunt Abby and Uncle Andy's house later tonight after I finish work.

I love you big guy.

Dad

Dear Henry:

When Jack was student of the week he took a piece of poster board and put pictures of him and everyone in the family on it. It is in Jack's room these days. This morning Joe and I sat on the floor and looked at it. I pointed to Jack and said, "Jack." Joe said, "Jaaa." I pointed to Mom and said, "Mom." Joe said, "Mommy." I pointed to you and said, "Henry." Joe said, "pfffftt." We went around again and when we got to you Joe again said, "pfffftt." I'll keep working with him. He'll know you.

Yesterday we went to Turtle Park. It was Safety Day. There were police cars and police horses and all sorts of fun things. There was a table sponsored by Children's Hospital called, Ask the Doctor. Of course 2 of the 3 doctors had been your doctors. Dr. Chahide, your surgeon, was there. Remember when he pulled out the long g-tube to put in the mickey button. Boy were we all scared. And one, two, three it was out. And Dr. Gatto, one of your early pediatricians, was there, too. I was happy to see them, but it made me sad at the same time.

Today we went to visit Hannah and Michael in Annapolis. I saw the swim vest that you wanted to wear so badly last summer when we went out there to say hello. I think Jack wore it some, but when you put it on you were so happy. It made you so happy I wanted to buy you one. You looked handsome. There it was today. All I could think about was you. I remember how sweet big Michael was with you. He played soccer with you in front. I think I was just too tired.

On the way home I was having one of those times when I cannot accept that you are not here.



I miss you, pffftt.

Dad

Dear Henry:

I was just walking home from the gym when I starting thinking about something. I used to think our lives were so hard when you were alive. No sleep, fear, pain. I didn't know then what "hard" is.

I am home now watching Charlotte's Web. Joe doesn't want to watch. Maybe some day. Hey, what kind of name is "Lervy," the Zuckerman's farmhand.

There is a funny grown up movie called, Annie Hall. In the movie Annie asks her new boyfriend, Alvy, if he loves her. Alvy says that love is too "weak" a word; he "lerves" her.

I lerve you.

Dad

Dear Henry:

I came across this story in a magazine today. It was good to read, but also hard. You should be playing soccer, too.

To Build a Baby

A quick genetic test is a godsend and a moral dilemma

By Fred Guterl
NEWSWEEK INTERNATIONAL

June 30/ July 7 issue — The extraordinary thing about Molly Nash is that she seems like a typical second grader in Englewood, Colorado. “She can be as stubborn as an ox,” says Lisa Nash, her mother, “and she smarts off now and then.” But like most 8-year-olds, she has redeeming qualities—a round, cheeky face, a toothy smile, brown bangs. She also takes dance lessons and plays soccer, and she’s a whiz in reading and math. “She’s a bit small for her age,” says Nash. “But not extremely small. There are kids in her class who are smaller.”

I have been meaning to give Molly's dad a call. I told you they came to the funeral. It was an amazing thing for them to do. It was not easy. I am so happy for them that everyone's doing okay.

The rest of the story talks about Dr. Hughes. He is an inspiration to me. He has had a difficult life but works really hard to be a good father to his sons. He also finds time to give so many families hope and he saves many lives. He is amazing. He came really close to saving you. We were so close. So close.

I love you big fella.

Daddy

Dear Henry:

We came out to the cemetery this morning. It was fun reading to you. I told Mom that I could see your expression when I read the part about Harry being banned from Quidditch for life. You would have given a great "Oh my gosh" look with eyes wide in disbelief. You had great facial expressions.

Mom sat on the grass next to you and I sat up on the bench and read out loud.



Speaking of the bench, we bought it. After we visited with you, Mom and I went into the cemetery office and met with a nice man who helped us order your headstone and buy the bench that is right next to your grave. You know how you loved to write your name on EVERYTHING. Well, guess what. We put your name on the bench. It will say, "Henry's Place." You were very good at writing your name on all of your possessions to make sure that your things wouldn't get confused with Jack's things.

We were able to order the headstone with everything on it. That makes it sound like a pizza. We will have Batman's bat signal and the Pokeball. This is the letter that let's us use the bat signal.



The Batman people's stationary is really cool. Check out what is on the back.



I asked the man at the cemetery if he knew what happened with the young boy who is buried near you. He told us that one day the boy was running a fever and his mommy brought him to the doctor. The doctor prescribed some medicine, probably antibiotics, and sent him home. He got into bed and went to sleep. When his mommy came in to see him in the morning he never woke up.

Take care of him, okay.

We want to have the unveiling around your birthday. It probably will be on the day after, which is Sunday, October 26. Mom wants to have the best party bags ever! Isn't that just like Mom. It is just like you.

Oh man, oh man. Do I ever miss you. I didn't cry or get too sad today. I just really feel how you are gone.

I love you, Henry.

Huuuuugggggggssssss (and tickles).

Dad a.k.a the Tickle Monster

p.s. a.k.a. means, "also known as"

Dear Henry:

This made me smile today.



I love you. Goodnight.

Dad

Dear Henry:

Tonight Jack told Mom, "I don't understand why God makes it that kids are at camp or school all day and parents are at work and they can't be together." Henry, these are one of those times that I, as a parent, was glad to be out of the room. Sorry, I'm just trying to be funny.

Clearly, Jack doesn't want to be apart from us. I know he is sad that he is apart from you. I don't exactly know what I would have said to him if I was Mom. You know I usually joke that I work to buy you guys toys. But I don't think this is the answer for Jack. There is something else going on in his head. I'll try to talk to him tomorrow. Nobody at his camp, the other campers (except for Matthew) or the counselors know about you. Do you think that plays into all of this?

Love,

Dad

Dear Henry:

I was clearing the table tonight after dinner and made a big discovery. I was looking at the surface of the table and saw "Henry" and "Henry" and "Henry." All over the table top was your name. Whenever you wrote your name on a piece of paper it made an indentation on the table. Jack and Mom came over and we all searched for "Henry's." Jack found a sentence that we all agreed says, "Henry Dad is burp."

I hope those Henry markings will always be there, but I know they won't. They're like you. Maybe we can put a pad on the table. Then we wouldn't be able to see the "Henry's." I guess this is one of those clear examples where we need to go on with things and live. A tabletop. Who'da'thunk it.

You know something. Whenever Mom was worried about one thing or another, like we missed a party or we weren't going to be able to go somewhere because you were sick or something, I always said, "don't worry, we have a lifetime." I don't think that is what people normally say in those situations. I know that I was saying this to give me and hopefully Mom confidence that it was really true. I think I would say it to you, too.

Mom is trying to put Joe to sleep and he is making a BIG fuss. I think it is time to call in the calvary - Me. I'll be back to write more soon.

Love,

Dad

Dear Henry:

I found this cool XM light-up pen to bring home for Jack. Psych!

One more thing that you would like about the place where I work are the vending machines. They have Pringles but I am not sure about Skittles. I asked Mom why you cannot buy Power Bars and Cliff Bars in vending machines. Doesn't make sense. The candy guys must be really strong and well organized to keep the healthy choices out of the machines. You liked chocolate Power Bars. Thank god. Mom and I were always exasperated by you not eating. We were worried that you'd starve to death. It almost worked out that way. I don't remember how many times you had to go to the hospital for malnutrition. It was a lot. Pediatricians always tell parents, "don't worry, they won't starve." They weren't talking about little boys like you who had stomachs being ravaged by graft versus host disease.

Hen, I wish you could check out this M&Ms site that Jack keeps visiting on the Internet. It has fun music and pictures. Jack even made a Japanese Monster Movie.

I love you and cannot wait to come out tomorrow. So far the skies are clear.

Love,

Dad

Dear Henry:

This morning was the first time that I dropped Jack off at the bus that takes him to camp. It is a new camp, not Beauvoir. On the way I kept thinking back to last summer and how you went to camp. You had a pretty good time if I am not mistaken. You were doing okay. This was before the whole almost dying thing in August . Your skin was getting better. I do remember that we went to the doctor a lot together because I was dropping you off or picking you up at odd times. We spent a good deal of time walking around the camp looking for your group. As always, you made good friends with the nurse. She was very nice and liked you a lot. You used to come to her office to take your pills and sometimes you would rest there.

I wasn't working last summer. Mom dropped you guys off in the morning on her way to work. Most days I would pick up you and Jack in the driveway after camp. Carpool line. I loved seeing you guys get excited when you saw the car. Then we'd hang out at home.

The nurse at Jack's camp called on Monday, which was his first day, to tell Mom that Jack had "suffered a head injury." I think what he got was a bump on that rock-hard melon of his. The camp even sent home a note about Jack's head. If Jack ran into a brick wall the camp would be smart to send a note home to the mother and father of the brick wall. Everyone is so worried about things. It is kind of like the man's email to me about the masks. I think I shouldn't have used the expression, "life or death."

Last year I got calls from camp or school letting me know that you needed to come home. Usually you were just too tired. I rode my bike to work yesterday. I wouldn't have been able to do that last year. I always needed a car nearby so I could get to you quickly. I liked being needed by you and rushing to get you as long as it wasn't too serious.

I am in a hurry to be with you now. I have wanted to get out to the cemetery but I am working and it isn't easy to get there. Tomorrow I am going out there with Mom. We have a meeting with the people there to talk about your headstone, the bench next to your grave and some other things. I'm bringing HPV: Order of the Phoenix.

Until tomorrow, Mr. Henry,

Dad

Dear Henry:

In life some things work out and some things don't. The big question is how hard to try to make things work that don't.

Here is something that worked very nicely.





Isn't it nice that Ari got to meet Suzanne. But now that I think about it he may have met her once when he joined you for a clinic visit. Did you know that because your birthdays are so close, he and you would have had your Bar Mitzvahs together at Adas Israel. That would have been some party. Ari told Linda and Mom that he wants to dedicate his Bar Mitzvah to you. He is a special person. You are lucky to have him as a friend. He and Rachel and Sid and Linda have been so good to you and to us. They are all very special.

And now here is something that didn't work out.

-----Original Message-----
From: Goldberg, Allen
Sent: Friday, May 23, 2003 3:31 PM
To: 'tbeddow@mmm.com'
Subject: The Marrow Foundation Dinner

Tom:

I wanted to introduce myself to you the other night at the Marrow Foundation dinner, but you left before I could find you. I wanted to thank you for coming to XM, and ask for some guidance with regard to 3M. I'd like to find out who is the right person to present the following.

When my son Henry was immune compromised after his bone marrow transplant, my wife and I struggled to get him to wear the 3M filtration masks that protected him from airborne bacteria. Two years post-transplant, Henry's immune system was weaker than it had been immediately post-transplant. The 3M masks, for us, meant life or death. Ever since Henry was first required to wear a mask in public I thought there could be an easier way to get him to wear it without the struggle. Clearly 3M can make the masks more fun and less frightening (to Henry and those he met in public) by imprinting them with cartoon and superhero characters and logos. For Henry, Pokemon characters would have made his mask as welcome a part of his wardrobe as his Pokemon t-shirts, Batman socks and Rugrats band-aids.

I'm sure you'll agree that 3M is in a unique position to help out the neediest patients and their families. Thanks for reading through this and I welcome your thoughts how best to proceed.

Regards,

Allen

-----Original Message-----
From: tfbeddow@mmm.com [mailto:tfbeddow@mmm.com]
Sent: Sunday, June 22, 2003 3:33 PM
To: Goldberg, Allen
Subject: RE: checking in

Allen, after carefully considering this idea the Vice President of our Medical Products Division has decided that we cannot pursue it at this time. The overwhelming backorder situation we have due to SARS and the anticipated stockpiling of masks against future outbreaks of this time have us totally focused on ramping up the supply chain. Frankly another key
element in the decision is liability. We are faced with 10's of thousands of frivolous claims that our masks did not protect workers from asbestos, silica and other materials. Logic of course tells you that any mask is better than none at all but that does not stop lawsuit abuse. The very sensitive areas of health testing of children and marketing to children would seem to create another opportunity for the trial bar. I know how personal this is for you and regret that we could not find a way to pursue your idea.

Wow, that isn't the answer I was hoping to get. Henry, this is sad for so many reasons. I don't know if this is the end of the idea of providing fun masks. I hope it isn't. I just need to think of another way to do it. I have someone really smart helping me with this and I think he can make it happen. I'll keep you up to date with how we are doing.

Hey, there is some good news on the Pokemon and Batman fronts. I already may have told you this but we can use the logos on your headstone. The people who needed to say "okay," did just that. We are going to meet with the man from the cemetery to get some of the details hammered out and they'll get to work soon.

Mom has worked hard to set up a foundation in your name, the Hope for Henry Foundation, to help kids and their families who are in the hospital having bone marrow transplants. To be honest, Mom has done most of the work and I haven't been as much help as I should be. I just throw out ideas, like getting photo booths (like the ones at the beach) for the floor so kids and their visitors can take photos of themselves. The friends can take pictures and leave them with the kid who is the patient. Then the kid who is stuck in the hospital can have photos of their friends around all of the time. Also, the kid who is in the hospital can take pictures of themselves with their doctors and nurses. These photo booths cost a few hundred bucks. I think we can get ones for Georgetown and Hackensack and Minnesota. I also want all of the kids to have XM radios so they can listen to XM Kids. I will work hard to make these things happen. Mommy is much more low-tech than I am. She wants to do nice things like get warm snuggly blankets for the kids.

A really good guy at work came to talk to me last week about a different foundation that sets up super cool home theaters at childrens' hospitals. He wants our company to help out. He told me how great it would make us feel to help out sick kids. He didn't know anything about you and about how well I know hospitals. I finally said, "You had me at hello," which is from a movie, called Jerry Maguire. It means that I was ready to help and he didn't need to "sell me." The funny thing is that Mommy and I saw Jerry Maguire not too long after you were born and we both cried all the way through. It wasn't a sad movie at all. It is just that there was a really cute little boy in the movie. That set off the tears. I remember thinking at the time that I wasn't going to be able to have my cute little boy for very long.

I wanted to tell you something. I have been taking some peeks at Harry Potter and they mention a kid who I believe must be the first Jewish wizard in all of the books, Anthony Goldstein. I'll be out to read to you soon. The weather is nicer now. There was a whole day without rain.

Miss you.

Dad

Dear Henry:

I need to spend more time telling you about the family and about good things. Sometimes I think I write too much about how sad I am and how awful life is without you. I know that you want us to have fun and here is some.



This is another one of those pictures that parents love but kids probably hate. It's cute now but I am sure Joe will think it is embarrassing when Mom or I show it to his girlfriend.

Joe can now say "bye" and it sounds like he is really talking. Normally he speaks in Joe language which is a few vowels and consonants away from being understandable. Mom says that Joe can say "Batman." I am waiting to hear it. The littlest man had a date and sleepover with Zhenny last night so Mommy and Jack and I could stay out super late. Joe was so excited to go to Zhenny's. He had a great time.

Sam Shoyer is sleeping over here tonight. Paula and Andy have so many kids that I bet they might not notice that he is missing. I better go set up the fort on your and Jack's bed for them.

I owe you a visit but I need a little cooperation from the weather. Too bad the rain can't wash away sadness.

Love you, my man.

Dad

Dear Henry:

This was your kind of night. We ran into friends (that's Emma Rose below with Jack) and there was a lot of excitement. One of the things that I love about you is the love you have for things and people and places. You were passionate. You got excited. You couldn't wait. You smiled. You danced. You were alive. You were magical. You love Harry Potter.

Clearly, Jack loves Harry Potter, too.









Tonight there were Bertie Bots, Butter Beer, Dobies, Harrys, Hermonies and maybe even Rons, though I didn't see any redheads. It was a party. It made me think back to the Harry Potter party that you and Jack threw for your friends. There was no special occasion; you never needed one. You and Jack decorated the house to make it feel like Hogwarts. We watched the first movie and everyone had a great time. Your friends came in costume. The signs are still up here and there. I think your room was Dumbledore's office.

We picked up our book and I made sure we got the CDs, too. So much of the past few years were spent in the car listening to Jim Dale read the Prisoner of Azkaban or the Goblet of Fire. I know how it will feel listening to this one. I'll enjoy it, but it will feel strange. It will feel sad.

I love you my Boy Who Lived. I wanted so much for the magic to work.

Dad

p.s. Jack is setting a record for staying up late.

Dear Henry:

The Moving Up ceremony began with everyone singing Hatikvah. I know that you know that Hatikvah means "hope." I desperately hoped that someone would say something about you but I knew that the day was about the 6th graders and about all of the kids, like Jack, who were moving up to a new grade. Jack looked incredibly handsome and grown up.



I just sat in the back fighting the urge to cry. I had to leave early to get back to work and I stopped by to say goodbye to your classroom.



There were photos of every one of your friends who will be in second grade next year. I am happy for them and I am sure you are, too.

When I got home I opened the mail and found an invitation for me and Mom. The invite is for a ceremony in Minnesota to pay tribute to everyone who died at the hospital between September and December. You were a fourth quarter loss. This is a ceremony where everyone will be expected to cry. I don't think we'll be going, but it was nice to be invited, nice that they remember you and nice that they think of us.

We will have a ceremony in October on your birthday to unveil your headstone. All of the lawyers have been very helpful giving us permission to use the Pokemon and Batman stuff on the stone. I think they'll start working on it soon. I keep you up to date with the progress.

Tomorrow is a big day. I am going to bring Jack into work and let him be on the radio again. Then we'll pick up Mom and go to the Harry Potter party. It isn't going to rain this weekend so I'll be coming by like I promised.

See you soon. I love you.

Dad

Dear Henry:

It has been a really tough morning. Mom is gone on business and Jack and Joe were really good, but I had a lot of trouble getting going. Today is the "Moving Up" ceremony at school. I am proud that Jack will be officially a first grader. All of your class will become second graders. I am very sad that you aren't moving up. This day is about the living and about the future.



You are going to be a part of my future because this goodbye is going to last forever and ever. Or at least as long as this "blog" company is in existence. There is always pen and paper.

God, I love you so much.

Dad

p.s. Good news. Mary Beth, the person I told you about who just had a bone marrow transplant, just engrafted. I sent a little treat to her husband because the people who take care of the patients need to be taken care of too. I wish I was still taking care of you.

Dear Henry:

Today is Father's Day. We saw Pop Pop Teddy at breakfast and Papa Sy at dinner. It was nice to see them. Mom told me that she understands that we are never going to have the "whole family" here for anything ever again.

Mommy and Jack and Joe and I went to the big boy park for a little while in the afternoon. I sat on the bench and leaned over and cleared the leaves and sticks of the brick in the ground that says, "We love Dad, Henry & Jack." For a while I just sat and watched Jack and Joe play. Jack was on the swings and went really high. Then I looked over at the field and watched the older boys play baseball. I hope all the dads watching their sons were proud of them.

After we finished at the park and ate some ice cream, Jack came with me to my office. He was on the Absolutely Mindy show on XM Kids for about an hour. Jack talked about birds and Uncle Stinky and the end of school. He was a little shy at first and then he felt more comfortable and had a lot of fun. You should have seen him talking. He would use his hands when he spoke. It was beautiful.





It is bedtime. Mom just tucked in Jack. As Mom was getting ready to leave, Jack told her that he had the most exciting day ever. He said that was because he saw an adult centipede, he made a paper mache volcano, he was on the radio, he has only four days of school left and it's Father's day.

It was an exciting day for me, but you know how sad it was, too. You made me a father. You also made me a good father. I love you for that.

Kisses,

Dad

p.s. Thanks for the shirt that you and Jack and Joe gave me.

Dear Henry:

Mom tells me your funeral was 6 months ago today. That was a really miserable day. The sun is finally out here.

Hugs and kisses.

Dad

Dear Henry:

Guess what. Only

Jack and I will be there at midnight to get the book. It is nice that the next day is a Saturday and we can sleep late.

I love you.

Dad

Dear Henry:

Jack brought home the yearbook.





Love,

Dad

Dear Henry:

I am the ace at putting Joe to bed. The secret: leave his pacifier and blanket in the crib so he is itching to get in. Pretty smart, huh. The other night I read him a book, then turned the light off and sat and rocked him in my arms. As I got him ready to put in his crib I started to tell him the story of Henry the superhero. It was a good thing it was dark.

It is a good story.

It's getting late. Six months are almost over. I wonder what the next six will be like. The only thing I know is that they'll be without you.

Love,

Your Dad

Dear Henry:

I have to tell you about the weather because it has rained for weeks and weeks without letting up. I am not exaggerating. There is a saying that April showers bring May flowers, but I think we need to say something like, April, May and June showers bring a whole lot of mosquitos. I am afraid we'll get "chowed" this summer. I do remember calling the city and asking that they spray our street for mosquitos to protect you from the West Nile Virus and they did it! yesterday the sun shined but today it is supposed to rain again. Yesterday was a day to ride in a convertible. I remember driving you and Jack around in Nana Pat's convertible Mustang. I gotta say that we were "stylin'." I know you and Jack really enjoyed it. So did I. I am so glad that you got to do that. When I was about your age I went for a ride in the back (it seemed like the trunk) of Pop Pop Teddy's cousin David's Corvette. I can still remember that so clearly; I got tossed around a lot. The Corvette was white. It must have been 1967 or 1968.

We went to school for Science Night last week. I was worried that I'd be really sad. I remember Science Night from last year really well. I remember all of us being there together getting our passports stamped at each classroom. We had a lot of fun together. I went into Mrs. Singer's classroom and there was nothing there that would let anyone know you were in that class. I was hoping that some of your artwork would be on the walls or a photo of you would be up with everyone else. But the photos were of field trips the class has taken since you died. I wan't prepared to find no evidence of you. There were these posters on the front window, though.




Jack, on the other hand, was very much in evidence all over his classroom. He drew excellent pictures of different birds and made a bird and birds nest out of playdough looking stuff. He is really smart and talented. Mrs. Kaye's class did a room that was all glow in the dark with planets and stars. Jack answered every question about the planets. He was so excited and I was so excited for him.

Do you want to know how special and wonderful your brother is? Earlier this week, all on his own, he went to visit Mrs. Singer in her classroom. He told her that first grade will be his last chance to be in the same class that you were in. He asked if he could be in her class. I'm blown away. See, he is being aggressive for something that is important. Way to go Jack!

Oh yeah, they have a yearbook from last year and there are photos of you in it. There is also a page in this year's with a photo of you. I'll put it on here.

I love you, Henry

Daddy

Dear Henry:



Look what you got big man. When we went to the bookstore Jack bought a bunch of books about birds -- he is really into birds right now. We also bought a new "Good Knight" book. It is called "Get Well, Good Knight."



In this book the knight finds his three little dragon friends suffering with really bad colds. The knight sets off to find a healing potion and visits a wizard. The wizard gives the knight really yucky soups that the dragons won't touch. The knight finally gets smart and goes to his own mom. She makes a really yummy soup that the knight takes back to the dragons. They slurp down the soup and immediately feel better. The moral of the story is that mom cures all. I have already read it a few times to Jack.

Someone very wise pointed out something to me. Jack gets scared when he gets boo-boos or needs to see the doctor because his parents aren't supermom and superdad. When you are growing up you think your parents are perfect and can fix anything that is wrong. I didn't realize that Grandma and Pop Pop Teddy were regular, normal people until I was more than 20 years old. Mom and I couldn't fix you. Now I understand why Jack gets so freaked out.

Mom was telling me that lately she feels like a failure. Strange thing is, so do I. I keep thinking back wondering why we weren't able to fix you, to keep you from dying. I wonder if we got too wrapped up in the quality of life stuff. I wonder if things would have worked out differently if I had taken you to St. Michaels and kept you in seclusion. Dr. Wagner said we needed to keep you away from people and harmful things for 9 months or so to get you better. Should I have forced you to wear your mask more. Was I not being a strong enough parent. I wonder about this all the time.

I got a package in the mail the other day and the return address was GE Medical Systems. I couldn't imagine what it was. It was a new power cord for the blood pressure machine that we bought for you. I should have moved faster on that. I got really freaked out in August when I thought that your convulsion was from high blood pressure. When you were being intubated by the ER team I was thinking that it happened from your high blood pressure and I wasn't watching you close enough. I should have ordered the hospital machine right away instead of screwing around with all of the over-the-counter units that didn't work. Sometimes I worry that I am not aggressive enough or persistent enough or vigilant enough.

Speaking of being aggressive (you know what that word means, right) I need to work harder on my relationship with Jack. Henry, when you get married (and boy am I sorry that I am not going to see you get married) the Rabbi or whoever always says, "You really have to work hard every day to make your marriage a success." I now know that you really have to work hard every day to make your relationship with your kid a success. You need to think very hard about why they are the way they are and appreciate that. You need to do special things and try hard to make them happy. I need to make sure Jack visits XM, that he visits the movie set in Baltimore and that we do some fun stuff together this summer. He is going to camp at the JCC in Rockville and he is going to a camp where he will build a rocket for a week and then shoot it off on Friday.

Jack is having his last day of school and moving up ceremony in about a week. That was a miserable day last year for Mom and me. We were really excited going in and then we saw you with all of your classmates. We never thought you looked sick or different when you were just with us. But when you were in a sea of kids who were well, we all of a sudden realized there was something very wrong.

Your friend from school, Rachel, is going through a tough time. I remember last year how you bought her some Barbie stuff to make her feel better 'cause she wasn't doing well. I wish I had fully understood how extraordinary that was. I just thought it was sweet, but I remember not being too excited about another trip to the toy store. Now I know it isn't normal for a 6 year old boy to want to go out and buy a friend something special to lift her spirits. I appreciate and love how your compassion was beyond your years.

Henry, your imperfections died with you. I cannot even remember any flaws. Did you ever throw a tantrum. I know you were two at some point but I don't remember you being "terrible."

There are these commercials on TV for Children's Hospital with a kid who squirts chocolate syrup all over the couch. The writing on the screen says something like "Some things are okay when your kid is recovering from heart surgery." I always thought that we needed to treat you like any other kid and not let you get away with things just because you were sick. I felt that you were going to be around for the long run and we needed to make sure you were a good person, not a spoiled brat. Even though everyone showered you with "stuff" you were the farthest thing from spoiled.

I think that we were spoiled by having you in our life.

Love,

Dad


Dear Henry:

Tomorrow marks 6 months since you died. I want to say a bad word right now, but I shouldn't. I have a lot to talk about with you. I'll get it up soon.

I love you.

Dad

Dear Henry:

I lost a whole day of letters I wrote to you on Sunday. I am trying to fix this so it will be easier and faster for people to read. I'll try to recreate what I wrote.

The important news is that we saw Suzanne on Sunday and she told Mom to come around the clinic on Friday to drop off the action figures. Mom, Linda, Jack and Ari will do it. Mom will take pictures.

Love you,

Dad

Dear Henry:

Yesterday we went to get Joe some new shoes. He is a whole size bigger. He was really cute with the big dog at Jeannie's Shoes. Joe got down on the floor and kissed the doggy right on the nose. We got him some sandals for the summer. You always had a lot of different shoes and sandals - just like Mommy. Remember this thing. It is one of those things that is a part of growing up.



Jack and Mom really liked Finding Nemo. The movie is about a father looking for his son. Maybe it was better that I didn't take Jack. Do you remember when we went to see E.T. at the Uptown. I cried through that entire movie. Good thing it was dark. You and Jack didn't see. I think you said, "that was the best movie, ever," when the lights came on.

The people who moved in next door are actors. They perform in plays here in Washington. Maybe we'll go see them. Beauty and Beast is playing at the National Theatre. One of the best times I ever had was watching you watch the Beauty and the Beast production at Disney World. A nice man invited me and Jack to come watch him make a movie about firemen in Baltimore. I need to do that. I think it will be really interesting.

I think we are going to pick berries today at Butler's Orchard.

More later. I love you so much. Weekends aren't the same without you.

Dad

Dear Henry:

Emma had a sleepover. She is building towers with blocks for Joe to knock down. Emma just said that Joe looks like you when he smiles and he laughs.

Love,

Dad