Wednesday, February 19, 2003

Dear Henry:

Speaking of beautiful.


Dear Henry:

Here is a photo of how the adirondack chairs were buried up to their seats by the snow that just fell. Boy, your butt would be cold if you tried to sit in them now!

I found this montage that I did from last February of your flight to St. Michaels. It was one year ago. I remember sitting right next to you. It was really a tight fit. I had just had my knee surgery and it wasn't fun being twisted like a pretzel, but I wouldn't have traded it for anything. It would be pretty cool to see all of the snow from the air. I think you may have brought this one in for show and tell.

And this is a photo montage of pictures that you and I took with Mommy from the kayak when we paddled over to the far shore. This was on the fridge forever. I am glad we kayaked a lot.

Do you remember when you made these at St. Michaels.

I love you.

Dear Henry:

Here are some pictures from this year. Jack hasn't had school for days because of the snow. I think it is cancelled tomorrow, too. I wonder how your classmates are doing. Are they hurting inside. Is it better now that time has gone by?

I still hurt buddy. But you don't. That's what's important.


Dear Henry:

I saw N'Lisa for the first time in months this morning.She didn't know you had died. She cried. A policeman, probably a friend or boyfriend, was picking her up in the snow to take her to work. She said she'd come over really soon. The woman who lived in the house next door to us died last week. She was very old. Her sons will probably sell the house now. I don't want to ever move from here. I don't want to be somewhere you weren't.

I love you.


Saturday, February 15, 2003

Dear Henry:

You know what. My sadness rockets skyward and plummets down to earth minute by minute, second by second. Different things trigger it. Sometimes I am aware of what is making me think of you; other times I haven't a clue. Below is a more appropriate measure than what I posted the other day, but still doesn't really show how my feelings swing during the day.

I wept again today on the way back from St. Michaels. It started in the same spot on Rt. 33 as last time. Mom offered to drive again, but I kept going.

I love you.

Dear Henry:

I was taking Jack home from school the last Thursday night and we had a really good conversation. I was telling Jack how I watched a video David Segal made of him and friends eating a meal in Viet Nam that included cobra. Jack reminded me of the photo that Benjy sent him of the snake charmer in Morocco and the cobra. Jack said he wanted to eat cobra sometime. Ick. He likes trying new things and definitely is more adventurous than me (you and Jack did things by the time your were 6, like ride an elephant, that i haven't done in my whole lifetime). Jack explained that he is an omnivore, while Mom is an herbivore. I asked if he thought you were a "chipovore." You know something; we still haven't gone to Cactus Cantina. The other day I went by the Cactus Cantina that is in another part of town, Adams Morgan. It isn't called Cactus Cantina. It is called something else. I forget. I kept wanting to take you there as a treat, but I didn't get the chance.

Jack drew this in school last week. It says,

Dear Henry.
You were the best brother ever. I'm finally 6.
Love Jack

Also, on that drive home Jack showed me how he learned from you how to meditate. He sat in the back seat with his legs crossed, his elbows resting on his knees and making the "ommmmmm" sound. Mom and I saw your meditation buddy, Dr. Mendelson, out on a date with a boy a few weeks back. I'm sure she still loves you. We stopped and said hello. She introduced us to her date as "Henry's parents." That was nice.

Do you remember how Dr. Mendelson wanted you to speak to a class of medical students and/or Residents at Georgetown hospital and take their questions about what it is like to be a patient? You would have been awesome at that. By the way, I found Bob the Builder, Rocket Power and Dora the Explorer Bandaids at Wal Mart in Easton. I will drop them off at the clinic this week. Last week Mom spoke to a class at Georgetown about how we tried to have a baby that would have given you new blood. I went with her to help fill in the blanks. The class we spoke to was in Georgetown's school of ethics, which might be described as people trying to figure out what is right and wrong when it isn't obvious. Some people who try to think only with their minds while not listening to their hearts believe what we were trying to do in New York all those months to have a baby that would have had the perfect kind of blood to save your life was wrong. Mommy was trying to help the students in the class to understand what we did was right. When they see pictures of you that we bring, they understand.

I am not sure you know that Mom is writing a book about what we did in New York and how you were such a great kid. I was trying to help her write a letter to explain the book, and I suggested saying how on your death certificate, which I told you about earlier, it says you died of "Fanconi edema." Of course they meant Fanconi anemia. But everyone should know (and the people who are not thinking straight should know) that the death certificate was wrong. The real reason you died is because we weren't able to have that baby. Nothing makes me and Mommy sadder than knowing we failed.

We went out to St. Michaels for the weekend. It is a long weekend because of the President's Day holiday. It started snowing on Saturday and it is still snowing this morning. It is Tuesday. There is so much snow here that if Joe went outside it would be up to his eyeballs. I dug our car out as much as I could and then we needed a snow plow to come to the house to dig us a path down the driveway to the street. Now we can get out to Church Neck Road. Mom walked into town yesterday and told me that Railroad Avenue isn't plowed. I cannot help thinking how worried I'd be if you were out here and we wouldn't have been able to get to the road and the hospital if we needed.

On Saturday, Jack and I went to the movies in Easton. You know that theater where we saw Monsters, Inc. and Toy Story 2. We saw Jungle Book 2. It was pretty good. You would have really liked it. I thought it was neat that the father figure in the movie said to Mowgli, "You deliberately disobeyed me." Do you remember who also said that? Right, Mufasa in The Lion King talking to his son Simba. I always tried to say it in the same deep voice but I wasn't as good at voices as you were. In fact, the voice of Mufasa is the same actor who voiced the evil Darth Vader in Star Wars. You know who can do Darth Vader's voice, Uncle Bill.

They reprised (that means played again) a lot of the music from the first movie, 'cause it's so good. You'd have been psyched to hear Colonel Hahti's March, the Elephant Song. When you were younger we would play that song over and over and over on the CD player in the car. If you weren't happy for some reason, I would just repeat that song and you were in heaven. Interestingly, Jack didn't like it. He may have been scared or sick of hearing it. I don't know which.

Remember how we used to sleep in the breezeway together in the house at St. Michaels. I cannot remember exactly why we slept apart from everyone, but it'll always be a special memory for me. This morning I was sitting in the strong sunlight in the breezeway reading a book that was written by someone who went to the Gan. He's a grown up now. It is a very funny book. From time to time I look out the windows at the swans in the cove. It's bitter cold out there but their feathers keep them warm. I try not to look too long at the swans because they are very beautiful and beautiful things make me cry. You're so beautiful. Crying comes very easily to me still. Disney songs and Kids on Broadway CDs are pretty cry worthy. That's kinda pathetic, but I am very raw from you dying. But I'm not crying all the time.

Check out this smile. It's real. It isn't that I've forgotten you. My goal is to go from crying when I am thinking about you, to smiling and laughing when I remember you.

I want you to know that Joe is growing into a fine little man, and a good younger brother. Brother Joe has the most interesting obsession. He loves brushes. As much as you love Pokemon and Jack loves building forts on the couch, Joe loves hair brushes. He holds as many as he possibly can in his tiny hands, and from time to time he brushes his hair with one. Maybe he'll be a barber when he grows up. Who knows.

Although he holds as many brushes in his hands as possible, he puts everything else he finds in the sink or the trash can. It reminds me of the way you used to "squirrel" away all of your little tchotchkes in every nook and cranny of the house,

Joe looks a lot like you when you were his age. What do you think. I think, like you and Jack, he is a very handsome boy. This morning Joe climbed up to the top bunk in the kid's room here and bonked his noggin hard on the safety railing. He has a big bruise on his forehead. Now he is looking a lot like you.

The neat thing is he is really different from you and Jack in many ways. The most obvious to me is that he does not like rough-housing. I cannot pick him up and throw him around like I do/did with you and Jack. He gets very unsettled once he is off the ground. Like you and Jack, he loves to dance. When we put on The Wiggles, he bends his knees and goes up and down. He'll also rock back and forth from one leg to another. He also does this little Flashdance (that's an old movie) thing where he jogs in place. As of last week he added moving around in a circle to his dance repertoire. Joe also is different from you because he doesn't get calmed by me holding his hand or stroking him. I want to tell you about this one time when we were up in Martha's Vineyard taking a small breather before going to Boston Childrens for hand surgery. You were agitated for some reason - you probably sensed a surgery was on the horizon - and we couldn't calm you down. So I put you in our car and drove all over the island while holding your hand. It took some doing to twist my shoulder, wrist and elbow backward to hold your hand, but I did it for miles and miles until you fell asleep and my arm felt like it was going to fall off.

Joe likes to be near Jack. That makes me and Mom feel good. I don't know if he realizes you're not around. He's gotta. I am a little worried that when he hears the name Henry later on he'll think of Henry the Octopus, who is a character on The Wiggles. I wonder why there was Henry the Penguin on Oswald, Henry on Digimon and Henry on Beyblade. Everyone loves the name. Someone who Mommy and I spoke with told us that you, Mr. Henry, will be a family story that Joe will know and share; but for Jack you are the story of his life. Jack was very cute with Joe last night. I took some video of it. I have a lot of good video of you and Jack together. I don't know if I have any of you and Joe, and we have only a few photos of the two of you. I wish for Joe and for me that I had taken more. I didn't know you were going to die.

I found this photo of us from the beach. I love it. I love you. I think about you in the snow and the sun and the rain and the night. You're my man.

Love, love, love. XXXXOOOOXXXOOO


Thursday, February 13, 2003

Dear Henry:

I've got a lot to tell you, but I'll probably put it all down this weekend. Just wanted you to see this photo of yourself from happier times.

This is something I did to let you know how I'm feeling.

In my mind I keep feeling and sketching out these spikes in how sad I get thinking about you. This chart doesn't really show that but I guess it lets you know that I am sad but getting better.

More to follow.

Love you,


Tuesday, February 11, 2003

Dear Hen:

I went to Georgetown yesterday to drop off more bandaids. Everyone there says your box is a big hit with the patients. Check out these cool Curious George bandaids that I found.

I drove to Baltimore again today. On Saturday, we were driving through Georgetown and Jack said, "this looks like the place in that city where we always park." Mom and I asked what city and he said, "you know the one that sounds like 'Bulbasaur.'" I said "Bethesda" and then Mommy and I both figured out "Baltimore!" When I was driving back home today I was thinking back to the time we took a detour to University of Maryland and the store in the Student Union was closed. We were so disappointed. We wanted to get you a Juan Dixon jersey.

I miss you a lot today. Just like every day.


Sunday, February 09, 2003

O Henry:

I am writing to you from down in Virginia Beach. I am sitting in the car with Joe, who is snoozing, while Mom and Jack and Sam and Joseph and Jacob and Andy are inside the Virginia Marine Science Museum. I can well imagine the smile that is on Jack's face. Ear to ear. All of them went out on a boat to see whales but there weren't any to be seen.

Humpbacks and Fins are supposed to be migrating off the coast right now but they must be keeping a low profile. When they all were on the boat, Joe and I went to a place here called "Cape Henry." I knew Mom's been itching to see some whales (you should have seen her smile when I suggested she go on the boat with Jack), and everyone was disappointed that we had to cancel the trip to Maine last summer. The truth is I was really psyched to go to Cape Henry, first, obviously, the name, and second, I really like lighthouses. We saw great ones in Maine when Mom and I vacationed up there before you were born, and I saw a neat TV program once about how they work. Do you remember Pete's Dragon. They operate a lighthouse in that movie. There are two lighthouses at your Cape, one really old and one that is pretty new. The old lighthouse was built at the orders of the First Session of the First Congress of the United States, in 1789. It's older than Aunt Ida!

That's the old one in the foreground. I carried Joe up 191 stairs. The new one is really beautiful. The colors are cool and it has a lot of detailed stonework that no-one builds anymore. You can't go up in the newer one.

When the first lighthouse was about 60 years old it was inspected and described as being "a fine cut-stone tower... in excellent order...." Only eight years later they found "large cracks or openings" in six of its eight sides. They decided to build a new tower right next door. It still amazes me how things can seem strong and okay one minute and fall apart the next. How does that happen?

When we left DC yesterday with Sam in our car Mom said that it felt like we left you at home. The car seemed incomplete, almost empty, without you in it. I felt that way last night in the hotel. The last time I stayed in a hotel was with you. I am glad that we watched all of those R rated movies on HBO. Do you remember that American Outlaws movie we watched so many times. The guy who played Jesse James, his name is Colin Farrell and he is becoming a big movie star now. You weren't paying attention to the bad words, right.

I was super duper sad starting on Thursday, but I am feeling a lot better now. Mom isn't. Last night she had a "panic" attack. She needed to see you really badly, and it made her "panic" when she knew that she couldn't. It is sometimes hard for us to understand that we cannot see you or talk to you or touch you when we are doing things that you normally did with us. How can I go to the clinic at Georgetown and you aren't with me. How can we go on a family outing and you aren't in the car singing along to Out of Habit or the Spongebob theme song. It doesn't make sense; you are still part of this family.

This is a good place to sit in the car. There is a Harbor Seal tank in front of the museum and I can watch them play. It makes me think of all the times we'd watch the sea lions get fed at the Central Park Zoo. Do you remember all those times we'd drive up to see Mom at Cornell. I was telling Mom yesterday while we were driving here how I used to throw Cheerios back at you and Jack like you were seals. We had a lot of fun. Wow, there's a pelican. That makes me think about Captiva. It'll be hard to go back to Florida without you.

I have to admit that I toyed ever so slightly with the idea that if we were going to see a whale it would be because of you. Maybe I didn't go because I didn't want to be disappointed. But Nana and Papa Sy told us yesterday that they saw a bald eagle when they went out to St. Michaels. Perhaps you made that happen.

I guess the good thing is you didn't miss seeing any whales.

Love you,


Saturday, February 08, 2003

Dear Henry:

Last week I went to the clinic at Georgetown to give them the jog stroller that we got for you when we were in Minnesota. When you were in the hospital I was looking into getting a big jog stroller to push you around. I found that the Baby Jogger company had strollers for bigger boys and girls called, "special needs" strollers. Even though you liked wheelchairs I think that you would have liked this just as much as a way to get around. I wrote to the stroller company and asked if insurance companies helped pay for the strollers. The unbelievably nice people there wrote me back and said they wanted to give you one of their strollers as a gift. Unfortunately it came to the Ronald McDonald house just as you went into the PICU. I wrote them a thank you note after we returned home without you. I said that you would have loved nothing more than to scoot about in the stroller. I know that for a fact. It was the Humvee of jog strollers.

When I wheeled that thing down the hall of the clinic everyone came out of the office and the examination rooms to see me and say hello. It reminded me of when you would walk in and everyone would stop whatever they were doing so they could say hello. You have something grown ups call "charisma." Everyone wanted to be around you.

Here is what Suzanne wrote me the next day.

Allen- It was funny to see your face in clinic after I was talking about you in our meeting (always good things:>:>) and there you show up! Thank you for the stroller.

It was great to see you all last week. I saw Meghan last weekend and we talked about how much we really missed Henry and what an awesome kid he was.
Hugs to Laurie and your gang (I know you already do!)....See you soon. Suzane

When I was leaving a MedStar helicopter was landing right over my head. Whenever I was in your room and I'd hear the helicopters landing at Hopkins or Georgetown I would say to myself, "Well at least we're not as bad off as those unfortunate people." I didn't think that this time.

I am struggling today to be a good daddy. I have plenty of patience but no energy.

This is you when you were Joe's age. Yesterday I wanted to take Jack sledding at Battery Kemble and today there was talk of a possible snowball fight. We haven't gone out at all to enjoy the snow. Sam Shoyer and David Lane are over playing. I am focusing on keeping Joe from hurting himself. I am glad that we have to get in the car and drive later. Joe will be strapped down. That should be easier.

I miss you.


It snowed seven inches or so on Thursday night. I was thinking back to the winter when you were born. From January 6-8 in 1996 it snowed 17 inches.

As if it were only yesterday, I remember being up with you late at night, I must have plucked you out of your bassinet because you were crying, and dancing and whirling around the family room with you in my arms listening to this song called "Stories" sung by Maura O'Connell.

I used to wonder if I could dance
When my friends said to take a chance
Maybe I'd sail across the floor
Into the arms of a new romance

Take the world in my loving arms
Turn it over with all my charms
Twist around and around and around by you
Say the things that you'd want me to

But I would always lose my nerve
As soon as I would reach you, girl
(or 'reach you there' if you'd prefer)
I felt my feet stuck to the ground
I could not make my move
I could not make my move

And the chorus went,

Snowflakes that melt in the sun
Beautiful songs that will never be sung
These are the stories that follow the human race
Spirits that long to be free
Living in you, living in me
Living in lovers all over the universe
Over the universe

I think about that night so often and remember it so well because I was incredibly happy and scared at the same time. I was afraid that yours was a beautiful song that might never be sung, but in that moment and for so much of your life, my feelings of happiness and hope were so much stronger than my feeling scared. Only a few times was the scary more powerful. When we made the snowman with Jack (Remember how I took that picture of you two in front of it, had a puzzle made out of the picture and had you and Jack piece it together to figure out what is was. You had no clue. That was pretty cool, wasn't it.) and went to Georgetown that night or the next with pneumonia while Mom was in New York with Dr. Rosenwaks was one time when scary beat out happy. One of the last times scary won the fight was when it was snowing outside in Minneapolis and I went out to scrape the windshield of our car outside the Ronald McDonald house and Nana called me on my cell phone and told me to get to the hospital right away. Even though I was so happy because Mommy and Jack and Nana were all there to help us and Mommy was talking about going home, I knew I needed to be scared. When I got to your room you were surrounded by all those people and you were spitting out blood and Mommy was so afraid. You weren't scared, though. Just sad.

I saw a little girl make a perfect sledding run down a hill in front of American University this morning and I cried. I think I cried partly because I didn't have anything to be scared about anymore. And I cried partly because you never got the chance to make that sled run yourself. Yesterday I had lunch with Uncle Andy and his brother John. They had just taken Michael and Michael's other cousin's, Benjamin and Alexander, to their place in Utah to ski. You know how Michael is such a great skier, so I asked Uncle Andy if Michael felt the "thrill" of skiing through the deep powder snow and he said yes. When you learn to ski as a grown up, like I did, you feel equal parts being scared of falling or getting hurt, and equal parts having fun and being happy. When you are learn to ski young, like Michael, and Mommy and Uncle Andy and Uncle Andrew, I think you only feel the fun part. Michael isn't scared of anything. One thing that made me sad was watching Uncle Andy and John together. They are brothers who are all grown up and still really close. They work together and still play together, only their toys are a lot bigger now. I think you and Jack could have been like Andy and John. If I was their daddy I'd be a really, really happy guy.

I drove by AU this morning because I went to close your bank account. That made me really sad. Mommy closed your college savings account yesterday. The people who handle that money didn't know you died.

Today we are taking Jack whale watching. Hopefully we'll see one and I can put a picture here for you. You know what I want to tell you. You can read my mind.

I'll say this part anyway.

I love you,


Wednesday, February 05, 2003

Hi Henry:

One of the things that was so much fun was the letter of the week that you were studying in school. We would drive in the car and think of all the words we knew that started with B, or E or O. I can see us driving home on Grubb Road (what a funny name for a road - I wondered if we remembered that for when G was letter of the week) scratching our heads just trying to think of just one more word.

Bumble Bee
Bark (George)
Beach Ball

Mom told me that they don't teach the letter of the week anymore. That's too bad.

Bye Bye Beautiful Boy,


Monday, February 03, 2003

Dear Henry:

How cool is mom. Look at what she made for everyone. She did personalized ones for Jack, Simon and Ari. We made an excellent discovery - the Washington Trophy Center. I wish I had thought of it earlier, but we could have made you medals and trophies with your name on them. You totally would have loved that. I miss hunting for things to make you happy, and then watching you enjoy whatever it was I found. That was a big part of my, Mom's, Nana's and Grandma's lives. To give myself a thrill I went online and bought Joe a Wiggles DVD and CD. Joe is really into them. Joe loves The Wiggles like you loved Pokemon. This particular DVD teams The Wiggles with Steve Irwin, the Croc Hunter. Crikey!

This hangs above the desk where I write these letters to you.


Dear Henry:

This morning I caught Joe putting his shoe in the trash can in the kitchen. He's a rascal.

Good morning big guy.


Sunday, February 02, 2003

Dear Henry:

Jack is sleeping in his space shuttle pajamas and the ceiling over your bunk bed is covered by the glow-in-the-dark stars. I think that says a lot about him. Maybe he is more like you than I realize. I bought a new black light for the stars the other day at White Flint at the glow-in-the-dark store. You used to love that store, Glow. It was right across from the soft ice cream, warm pretzel place. They have glow-in-the-dark Orioles baseball bats. Did I tell you that we are going whale watching next weekend (finally). They have humpbacks and fin whales migrating off of Virginia Beach. I am so sorry we didn't make our trip to Maine this summer.

Here are some really nice notes we received last week. I thought I'd share them with you. It makes us feel good to read them. I am trying not to get too sad right now, but it is hard.

Norman is our friend who took the pictures of you at the beach. That is his photo that is now on top of this page. He and Joanna were really nice about sending us some of the extra photos from that session. I keep looking at them and looking at them. They capture what is inside you. The strange thing is that you aren't smiling in most of them. Norman is really good if he can get you not to smile. Do you remember how Dr. Brochstein would say there is no smiling or laughing allowed in the hospital. You and Jack would just crack up. I think it was really hard for you not to be happy. It took a lot to make you sad and looking at photos we took at your birthday make me realize how sad you really were toward the end. We got these developed just last week.

I found a great picture the other day in one of Mom's albums. It is everyone in Mom's hospital bed at Sibley right after baby Joe was born. We had taken you there straight from a long stay at Georgetown Hospital. Oh-no, look, a family of rule-breakers, everybody is smiling. I think it is very representative of our life, and that's the life that I miss. I can feel that you're not here. It hurts so much.

I am so glad I was your Dad, but I really wish we had more time. I want you to see those whales.


Dear Henry:

Jack said yesterday that he liked it when you were "in charge of Joe." He meant that he liked it when you, as oldest brother, were responsible for keeping Joe from making mischief or getting hurt. Joe is so good at getting into trouble that he is a lot of work for mom and Jack and me. I made him broccoli for dinner. Jack and I and watched him take some and put it in the toy chest. He's sneaky. You were really good at making sure Joe was loved and safe. I think about how he will be a different person than he would have been if you were still around. Not better, not worse, just different. I'll try my best to help him know his brother Henry.

We went to the cemetery again today for the unveiling of Grandma's headstone. It was sunny for once. I think today was a little harder than the other night. We all put bright, colored stones on your marker. They were turquoise, blue, white, pink and brown. Sometimes I have a little trouble catching my breath when I think really hard about you. I tried to think about Grandma and you today and it was a little too much for me. I felt out of breath. I told Jack that I was sorry he had to do so many sad things. He smiled. I think he is a little like me when he does that. I told him he didn't have to smile when he is sad.

Uncle Dan and Hannah are flying back on Uncle Dan's plane and Aunt Jen is heading back to St. Louis on a big airplane. Jack slept over Pop Pop's with Hannah for two nights in a row. She is like a sister to Jack (and you). It makes Jack feel good to have a sleepover with Hannah. He must feel the way he used to feel when he slept in the bunk bed with you every night.

Judah Drelich's mom stopped me at school on Friday to tell me that Judah says the Kaddish for you every Saturday. Everyone is still thinking of you.

I'm thinking of you.

Love you,