Letters to my son.
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| Dear Henry Letters to my son. |
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Friday, January 31, 2003 Dear Henry: Mom and I went to the cemetery yesterday. It was snowing when we got there. As we pulled up there was a man locking the gate. Mom, and I love her for it, asked the man if he would open back up to let us in. He said he didn't need to. All we had to do was park outside the gate and walk around the wall. Basically, we can come visit any time of day or night. Here is a picture of where you are buried and the tree next to you. You have shade from the sun and there are nice benches to sit on for people who come out. There were some flower stalks sticking out of the ground by your grave, so someone else has been out there. Mom thinks it might have been Debbie Blum. A marker at the grave says your name. We'll get you something fancier soon. I wonder what it will say. I want people to know right away that you are a kid.   There is a sculpture of Moses nearby. I don't know if I've mentioned this to you before, but I think you have a lot in common with Moses. You brought Amitai and others who will survive transplant (because of the work you and Mom and Mark Hughes did with PGD) to the promised land but you were unable to enter.  Hannah and Aunt Jen and Uncle Dan are in Washington this weekend because we are "unveiling" the fancy plaque on Grandma's grave. She had a marker like yours with her name. Then Pop Pop Teddy got something nicer, and there will be a ceremony tomorrow for everyone to see it. Here is a view from Grandma's grave to your grave. You are very close. It's nice for us; I hope it is nice for the two of you. I am so glad that you are together. Papa Sy's parent's, Nan and Pop are buried not too far away. Mom said you'd love them. There is a lot of family around. Just like when you were alive.    Visiting wasn't as sad as we thought it would be. It doesn't necessarily feel like you are there. I said to Mom that it is more a place where we can go and think about you. I get more sad and feel you more when I go to a place where I know you used to be, where you used to smile and laugh, like our house or school or even someplace like White Flint Mall. Do you remember when we went there to get you the tuxedo for Tim and Catherine's wedding? That was so much fun even though Jack didn't want one and was in a real bad mood. Then he was bummed out after seeing you all dressed up and he realized he didn't have one. He gets stubborn sometimes. Another fun memory of White Flint is KidZone. It used to be called DiscoveryZone. I dropped Zhenny and Joe off there the other day so they could get out of the house. They had so much fun that we decided to take him back today, Saturday, along with Hannah and Jack. "Attention, attention I've got something to mention." That is what the guy is saying over the loudspeaker at KidZone. Mom went with Joe to Bloomingdales. They are going to buy Mom a winter coat for work and maybe a birthday present for Zhenny. The last time we were here must have been long ago. This place should be called GermZone. Even though you are gone I still cringe when I hear a kid cough or sneeze.    A few hours before we went to the cemetery I was driving home from the printers where Jeffrey, David and I are having the letterhead and business cards printed for The Jewish Rock & Roll Hall of Fame. The printer was in Takoma Park and I was thinking about a bunch of different stuff on the ride home. One thing that crossed my mind was that we should get a dog. Jack and now Joe are big enough to enjoy a dog. I wish we could have gotten one when you were alive. As I was driving along Nebraska Avenue thinking about what kind of dog we might get, a woman ran off the sidewalk out into traffic and smashed into the minivan. To be honest I thought I had killed her. It was very upsetting. I didn't see her until it was too late. I saw her out of the side of my eye, there was a loud bang and she disappeared down onto the street. I slammed on the brakes and came around to see what I could do to help her. There were a lot of people who had run to help. She told me that her husband was a couple of blocks away and I ran as fast as I could to go find him. I remembered back to the day in August when I thought you were dying and I drove so fast to the hospital just to have a chance to say goodbye. I didn't want this woman to be in pain without her husband to comfort her, and I wanted her husband to have a chance to say goodbye if she was hurt really bad. An ambulance came and they took a long look at her and nothing appeared to be broken or too serious. I was so relieved for her. She had a gash on her forehead, and her wrist looked banged up. Her husband, who I didn't find when I went to look for him but finally showed up, hugged her so tight when he saw her. The woman didn't want to go to the hospital in the ambulance.They were from Williamsburg, Virginia and wanted to wait until they got back home to go see a doctor. I told her that she needed to go before she headed home. How could she know if she was bleeding inside or had a concussion. I finally convinced them to go and they followed me to Georgetown Hospital. I left them at the Emergency Room. I asked if Dr. Foley was on duty and they said no. She was attending when Mom and the police rushed you to Georgetown on August 24th. She is the mommy of Helen, your friend from camp. The woman who I hit called me yesterday to let me know she was alright. She told me that if she was going to get hit by a car she was glad that it was me. That was nice. I still see in my head the image of her smacking into the car. It was very scary. She crushed the side view mirror into little pieces. If things had happened a half a second sooner she would have been in front of the car instead of the side and she probably would have died. The strangest thing is that a policeman gave her a ticket for not crossing in the crosswalk. I asked her why she bolted into the street without looking and whe told me she was running after a friend's dog, who got loose. Your brothers are going to have to wait awhile for that puppy. I wish I had some good news to tell you, but the space shuttle crashed today. All of the astronauts died. Do you remember when we went to Kennedy Space Flight Center at Cape Canaveral. We went up in the space shuttle model. I remember that you got a nifty marble that had the earth on it. We also bought t-shirts that you and Jack wore a lot, and Jack got a great astronaut flight suit. Do you remember meeting astronaut, Cmdr. Jon McBride. He was pilot of Space Shuttle Challenger mission STS-41G which launched on Oct. 5, 1984 with the first crew of seven astronauts. The strange thing is that his wife, Sharon, is from Nacogdoches, Texas. That is the very place where the space shuttle disintegrated today when it reentered the earth's orbit. It is a very sad day for everyone, especially the moms and dads and husbands and wifes and kids of the astronauts who died. You might remember that in one of our science lessons where I would read to you from things I found in the newspaper how I told you how there is an astronaut from Israel. He died today.  Do you remember how you fell off a piece of the playground equipment at Cape Canaveral. You were upset and so were me and Mom. Your chin got the worst of it. You can see it in the photo. But from your smile it looks like you were okay. The cool thing is that Jack said this morning that even though the shuttle crashed he still wants to be an astronaut. posted by Allen | Friday, January 31, 2003 Thursday, January 30, 2003 Dear Henry: We're coming out to the cemetery today. I kissed your picture on the refrigerator just now. I don't know what to expect. See you later. I love you. Dad posted by Allen | Thursday, January 30, 2003 Tuesday, January 28, 2003 Dear Henry: I was on the checkout line at Whole Foods (Fresh Fields) today and the woman standing behind me said, "Hi, I'm a friend of Scudi. How is Henry?" You know I kinda like that you are still alive in some people's minds. I had motivational problems again at the gym today. There is some sitting around between lifting the weights and my mind always drifts to you. I try to turn up the iPod (I need to tell you about that cool thing I got for my birthday), but I can never turn it up loud enough or don't want to turn it up so loud as to drown out my thoughts of you. So there I am sitting on this bench feeling like I am going to cry. Not the best image for "pumping iron." One song that played today was I'm Not Down by a group called the Clash. That was pretty inspiring. You know a funny thing has happened since you died. Every song I hear makes me think of you. Mostly these are love songs and they're about love that mommies have for daddies, and daddies for mommies. In fact, the last time I felt that every song I heard was really about me was when I first fell in love with Mommy. One song I heard yesterday said, I won't hold you in my arms until I can hold you in my heart. I think I have to be satisfied with holding you in my heart. It's hard but it is all I've got now. My arms miss you. Daddy posted by Allen | Tuesday, January 28, 2003 Monday, January 27, 2003 Hey Henry: I drove Jack and David and Joe to school this morning. We were up so early I thought let's bag the bus and go all the way. Here is a picture I took from the road. I miss riding along Rock Creek Park without you everyday to and from school. Do you remember the Ford Taurus we rented in Minnesota. I kept saying, "look at that," and you were so sunken down in the seat you couldn't see above the door handle. It became a joke after a while. I'd forget you couldn't see anything and I'd tell you to look and you'd say, Daaaad." Kinda like the way I always put yours and Jack's shoes on the wrong foot.  I miss experiencing life and nature with you. I love you. Dad posted by Allen | Monday, January 27, 2003 Sunday, January 26, 2003 Dear Henry: This is from a note that Dr. Peters sent to me and Mom. He has the best hair, don't you think. He was a really nice doctor and he says some nice things about you. He donated this awesome TV to the Ronald McDonald house up there. I was really counting on you getting out and coming to live there and watching movies on the awesome TV.  We did get a pre-printed condolence card from the Hem/Onc department signed by its head, Dr. Norma Ramsey. I don't know if you remember her. You might have met her in clinic once or twice after transplant. I am sorry that they have to have pre-printed cards. Goodnight Henry. Dad posted by Allen | Sunday, January 26, 2003 Hey Henry: I've been reminded lately of the time, right before we went to Minnesota, that we went for a haircut. Since you were supposed to be in isolation I thought we'd be safe on this particular Wednesday morning because I thought there wouldn't be anyone else at Bradley Barbers. But there was some kind of "professional" day or something and kids in Montgomery County didn't have school. So we got there and had to sit in the last seat near the door while we waited for an open chair. You were wearing your mask. There were two brothers walking out and I wasn't focused on it, but I thought I heard one say something to the other about you. I asked you what he said and you told me not to worry about it. I was all ready to open up a can of whup-tushy on him and you were totally non-concerned and telling me to relax. Who was the kid and who was the dad. Thanks for helping me understand what is important. Mom and I are ready to come out to the cemetery. We are planning to visit on Thursday. I asked mom how we are going to ever leave once we get there. Mom said it all depends on whether I think you are actually there. That's a tough one. I know you are in everyone's heart, but at the same time both me and mom can't help but think you are in your bed down the hall. But we did bury your body at the cemetery. Mommy said that she took her shoes off when she left the gravesite after the service because for years she worried how she’d ever walk away from burying you. There was 4 inches of freezing water soaking the ground. To tell you the truth, I am glad Harry Potter and The Order of the Phoenix is coming out in the summer. It would be tough to sit out in this frigid air and read to you. It's definitely electric blanket weather out now. Mom went up to New York today for 2 days. Whenever she went away for her in vitro cycles and left you and Jack with me, you guys would make her pay for it when she got back. You wouldn’t be your normal sweetest guys in the world, but that’s okay because after a few hours or so you’d come around and let her know how much you love her. I bet you never did that on purpose or even realized it, but it always happened. It's a kid thing. Then you or Jack would say "Mama," which would make mommy melt and all would be fine. I miss Mama a lot right now. It is hard to be away from her and you. Since Mom had to go to New York, Jack and Joe and I decided to take a field trip to the Maryland Science Center and the aquarium in Baltimore. On our way up to Baltimore we were passing by JPDS and Jack said to me, “Henry’s toys are my toys now.” I said that you would have wanted it that way. I told Jack that if you knew you were never going to wake up again, before you were intubated you probably would have told Jack to play with your toys. Then Jack said, “Maybe Henry thinks he is just still sleeping, maybe he thinks he is still in surgery asleep.” It is very sweet that he is thinking about you this way, making sure you are okay. Thankfully, Baltimore wasn’t only Hopkins and the 8th floor clinic and Weinberg garage. Do you remember when we went to the Orioles game this summer? How did we have such great tickets?  Today we parked on the same side street where we parked in September when you, me and Jack went to the Science Center. You don’t know this but when we were in Minnesota I actually talked to the folks at the clinic there about what it takes to get a handicapped parking permit. Even though we usually had to carry you places, I never felt or wanted to believe we qualified. What made me think it was time. Guess what, The Lion King is playing in the IMAX theater in the Science Center. You told me that you wanted to go see that. Man, so do I, so do I. Hey, did the big crab move when we were there? It was moving today and it was really cool. We went around the exhibits and we saw a “Stinkpot Turtle.” The Stinkpot lets loose a bad smell if disturbed or threatened, just like a skunk. How’d we miss that when we went this fall, us, the kings of stinky feet? The Stinkpot that lives in the exhibit sleeps in a log for solitude. I thought that sounded nice. For some reason it made me think of you. They had a Lego marine life exhibit and had created a submarine out of yellow blocks. What was really amazing was the totally Lego toilet. There was also an exhibit of the Visible Human Project, which were really neat photos of the inside of a man who had died. I always used to tell you that you had probably more pictures taken of your insides than the outside. When we were there in September, you bought a Star Wars pin at the gift shop. Today I bought you Loosy, a Canadian Goose Beanie Baby. I put it up on your pillow for you. Oh yeah, don't worry, I made sure to cut off the tag.  You can see that he is waving to you. Jack and Joe and I walked back around the Inner Harbor and stopped and had dinner at California Pizza Kitchen. No-one was out. I think everybody was home getting ready for the Super Bowl. I really couldn't care less about football right now. When we headed back to the car it had gotten dark and snow was starting to fall. It was really cold and Jack wasn’t moving too fast. He was busy catching the big, fat flakes in his mouth. My favorite, most yummy thing in the whole wide world was keeping your ears warm. I know you liked it too when I’d cover your entire ear with my mouth and blow warm air on it to make it warm. As we drove back the snow was really coming down. I asked Jack if we could listen to this CD of your favorite songs that we made to give away to people who came to the Shiva. I said that it would be nice to play it and think of you since you couldn’t be with us. Everything seemed so right and familiar today with the exception of you not being in your car seat trying to crack up Joe. Listening to the Henry CD, something I haven’t done in weeks, made me start to cry. I looked back because I heard Jack singing along and it looked like he had tears in his eyes. He was blinking his eyes and looking really sad. Joe was crying too, but he was just trying to poop. Through the tears and the snow it was really hard to see. I should only get sad on nice days. I love you. Dad posted by Allen | Sunday, January 26, 2003 Friday, January 24, 2003 Hey Henry: I've been listening to this song by Billy Joe Shaver. He is a favorite of mine from way back and I remember feeling sad for him when he lost his son on New Years Day, 2 years ago now. His son Eddie was friends with Todd Snider, the guy who sings, Beer Run, "B double E double R U N, Beer Run." Billy Joe's song about his son is called Star in My Heart. This is how it goes You are the star in my heart Guess you've always known Though we are many worlds apart I'll always be your friend And friends will always be friends forever Maybe that feeling I have in my heart isn't from it being broken, maybe it is just the feeling of it getting so much bigger 'cause you're now taking up so much more room. I love you. I wonder if you feel me in your heart. It should feel like your chest is going to explode. Your daddy, Me posted by Allen | Friday, January 24, 2003 Monday, January 20, 2003 Hey Henry: We made it out to St. Michaels. The sun was setting and it is as beautiful as you remember. Here is a photo from inside the "kids" bedroom. You always took the big bed with Jack and/or the cousins in the bunks.  Listen to what is going on inside my mind when we got there. Henry, Henry, Henry, Henry, Henry, Henry, Henry, Henry, Henry, Henry, Henry, Henry, Henry, breathe, Henry, Henry, Henry, Henry, Henry, Henry, Henry, breathe, Henry, Henry, Henry, Henry. There is a new flag pole out here by the dock. See.  I thought it might be fun to raise and lower in the morning and night. But Papa Sy tells me it is a "perma" flag and always flies. It's like the way I am always thinking of you. When we got there mom peeked into the shops, and I sat in the car with a sleeping Joe and Jack. I sat there and thought about getting ice cream at Justine's, feeding the birds corn kernels down at the Crab Claw, and of course choosing Marbles at the toys store upstairs at Calico Gallery.    Do you remember last summer when we went fishing off the dock at Nana and Papa's house in St. Michaels. You, me, mom, Jack and Papa Sy must have caught at least 5 fish a piece, probably more. I never laughed so hard watching mom get excited when she'd land the fish and when it would flop about on the dock. You were awesome!   We brought Speedy to St. Michaels with us. I thought about the time when you and I left Uncle Peter and Aunt Alice's beach house on our way to Hackensack and saved that turtle. Now that I think of it we did a lot of beach to hospital runs. Whatever. So remember how we were right outside of Bethany and saw the turtle crossing Rt 29 or is it Rt 26. We stopped the car and snatched the turtle right off the road and placed him on the side where he was heading. We both knew that you always put an animal on the side where they are heading or they'll start back across the road. Another life saved. You know that you probably saved some more lives by being in the newspaper, remember that New York Times article with Molly. I know that there were people who realized their kids needed new blood just from reading the article, and there were people who decided they would be donors, like Beverly was for you. Jack and Nana and I went to Blackwater Wildlife Refuge, which is not too far from St. Michaels. Sorry I never took you. Papa Teddy took me there once when I was a little guy. With Jack and Nana we saw snow geese, great blue herons and a bald eagle. A nice man let us look at the bald eagle through his telescope. Papa Teddy got you a huge telescope for Hannukah so we gave it to Jack, from Papa Teddy, for Jack's birthday. Jack really wanted one of those things I put together for you with pictures from your adventures. The best thing to call it is a photo montage. We did one in Minnesota 2 months ago, but the ones I remember the most were the ones I did for you after we flew to St. Michaels in Uncle Dan's plane and the time you, me and Mom took pictures from the kayak of the ospreys and the swans. Remember how we paddled close to the osprey nest and got just close enough to get the mommy and daddy osprey mad at us but also close enough for great photo. I'll find those and post them. In the meantime here are some photos we took of the birds at Blackwater and Jack's photo montage, which he brought to school for show and tell.    Uncle Dan was here last night. He flew in from St. Louis. When We flew with Uncle Dan and Papa Sy to St. Michaels it took us something like 15 minutes to fly there. And then the man working at the airport drove us to Nana's and Papa's house. You were really into the way you sounded like Henry the Robot when you talked on the headset in the plane. "I am Henry the Robot." I hear you saying it in your robot voice. "I am a robot." I am transferring all of the video that we took of you over the years to DVD. I am writing as I do it, you are yelling "Dad, dad" to try and get my attention. I see you and I hear you. You are at Shabbat sing and wearing your Old Navy muscle shirt with orange trim. You know I always loved going to Shabbat Sing and I always cried (but you never saw me doing that, did you). There was something about the combination of all of the kids together singing songs that I grew up singing. You have a bruise on your bicep. Sorry. Wow, that's weird. I am transferring all of our old tapes on to DVDs and I am watching video I took of you and Jack inside the toy store in St. Michaels. The same exact stuff that I took photos of this weekend. There you are eating ice cream at Justines. All I have to say is thank god I was so afraid you were going to die at transplant that I took so much video before we went. I never told you that before, of course. I really wish I had taken more the past 2 years. The whacked thing is that I figured I would wait until you looked "normal," "like yourself" and not puffy from the steroids before I took a lot of video again. Or maybe I just settled in to thinking you'd be around forever so I didn't need to be so aggressive about capturing every minute. I used to throw out photos because I didn't think they "looked like you" with the thinking that I'd start keeping the ones after you went back to looking like Henry. Mom used to ask the doctors all of the time if we could taper down the medicines that made you look so puffed up. And you were more and more uncomfortable with the way you looked. The strangest thing is I never saw you as being really puffy, but looking back at all of the photos we did keep from the last two years I realize that you were bigger than normal. You're still so gosh darn handsome. You look like mommy.  On the drive to St. Michaels, we were listening to the CD that has 3 Billy Goats Gruff on it. When it came on Mom said that you told her you really like this story. You brought home the book and the tape when from Liane's class. And when I talked to Mommy's friend Jane on the phone last week, she reminded me how we played 3 Billy Goats Gruff on the bridge on her family's property (their St. Michaels), called "The Knob." I was the troll and you and Jack were billy goats. She said she thought you guys were really cool. On the ride back from St. Michaels, late Monday night, we were driving along and I just started crying. I was crying very softly, and I put mommy's hand to my cheek to let her know how I was feeling. And then when I saw that Jack and Joe were both asleep I started to sob out loud. It was like I was sad and the harder I thought about you the harder I cried. We rented a movie the other night called About a Boy. I read the book way back when we were in Minneapolis for your transplant. You'd think a movie with a name like that would make me weep, but it didn't. I really enjoyed it. Hen, you know how lately you always wanted cold water and insisted it have ice. You totally made me work but I loved making you happy and comfortable. Well, you'd love what happened this week. The weather is so cold outside that our water cooler bottles have frozen. I can't even put them on the water cooler 'cause they are so heavy I think they'll break it. When I get them on top I bet we'll have the coldest water ever. Sorry you missed this. It would have been just the right temperature, but you still would have insisted on the ice. Suzanne was here the other night. She stopped by to get the manual for the blood pressure machine. She sat with me and mom and we all told great Henry stories. She talked about the time you two went on the date to Cactus. Here is an email that she sent me yesterday. Hey Allen: It was great to see you guys last night. (I didn't get a ticket on my car!). Anna was just telling me the story of another child yesterday who was really upset about having her port a cath accessed and deaccessed and when Anna put the tool box down she was so excited and begging to have the port de accessed so she could pick her bandaid. All of a sudden everything was all better when the tool box showed up! (She has such a hard time being in the clinic). Jada just said "Henry came to be with her". So last night I was surfing the TV and I came across a program on the Discovery Health channel that showed a boy getting ready to go in to have his central line placed in his chest. Of course, I should have turned the channel, some might think this is self-punishment, but I knew that it would help me think of you. It would take me back to the many times you were being readied for surgery. And sure enough, this little guy, musta been 4 or 5 years old, starts to cry when they start to take him into the OR, even though his mom was still at his side. That is the normal, acceptable way it should happen, but of course you always went in like a guy without a care in the world. I think one of the saddest moments for me was when I realized you didn't cry any more at clinic when they took your blood. It had become such a regular part of your life that you just accepted it and it didn't really phase you. Joe is getting to be a big guy. I hope you don't mind him playing with your lightsabre. He is able to make it "extend" with a snap of his wrist. He is the padawan and you are the Jedi master.  And check this out. He doesn't only walk, he climbs. He can make it all the way up the ladder to the top bunk without help. We need to keep a close eye on him. We miss having you help us with him.   I found these pictures from last summer when you played T-ball for Takoma Park little league. When were you sick? This must have been before August. You were such a good hitter. I was always excited when you smacked the ball so hard. You made those games really fun to watch. Thanks.   I love you slugger. Dad posted by Allen | Monday, January 20, 2003 Sunday, January 19, 2003 Hey Henry: I think I might change the name of this to Hey Henry. That sounds more like what I would say. Do you know we are going to go to St. Michaels tonight. I wonder if Nana has been in to the toy store and told the woman there that you died. Do you think I should go in and buy you a couple of marbles for old time sake. Did I ever tell you how going through your marble case with mom made me weep uncontrollably. You were so meticulous about picking your marbles and you really took pleasure in them. Don't worry; they're all safe. Oh man I love you so much. I just took a shower and thought about you so much. There is nothing in the shower to distract you from your thoughts and it is the one place that I can really focus on you. I think we're going to need a bigger capacity hot water heater. I love you. Dad posted by Allen | Sunday, January 19, 2003 Dear Henry: Even though you were all grown up sometimes when we walked together (when I wasn't carrying you) you would hold my hand. Thanks for doing that. I thought about that tonight and it made me smile. I love you. Goodnight. Dad posted by Allen | Sunday, January 19, 2003 Saturday, January 18, 2003 Dear Henry: Guess who is finally having a sleepover at our house...  Speedy! We never had him come home when you were in Kitah Keshet and I know you really wanted him. But as you knew, all too well, we were worried about salmonella. You were always good about not touching things you weren't supposed to. You know what? President Bush went out with Mrs. Bush to eat at Cactus Cantina the other night. He had chicken fajitas just like mommy and Jack. We still haven't gone back. I think we are going to St. Michaels tomorrow. We haven't been there since you died. I just found this picture of you on the old tree swing out there. You're wearing the Maryland pullover that I bought you and Jack.  I miss you. Love, Dad posted by Allen | Saturday, January 18, 2003 Thursday, January 16, 2003 Dear Henry: Angels in the Outfield is on television. You loved baseball movies, especially The Rookie. Thanks for watching that with me. Love, Dad posted by Allen | Thursday, January 16, 2003 Dear Henry: June 21. The new Harry Potter book is out June 21. I think the bookstores open at midnight. We'd have gone. Maybe we still will. Today is Nana's 65th birthday. I think she is going to be sad. I'll bring the new book to the cemetery and read it to you. Every word. I love you, Dad posted by Allen | Thursday, January 16, 2003 Dear Henry: It is 2:38 am and blogger is down so I cannot post this right now. I can't sleep. I am just laying here in bed thinking about you. I don't want to take the medicine that helps me fall asleep. Actually mom is up too. She is in pain from going to the dentist today. Ouch. When you were up this late, which was way too often, I'd usually put on a movie for you. Normally, I'd fall back asleep but you'd watch whatever it was all the way to the end. Mom went to the dentist to fix some stuff that went wrong in Minnesota. I feel bad for her 'cause she hurts so much. She is also very upset right now thinking about you. It bothers me that you were in such pain. I hope I was good to you when you didn't feel well. I can never understand why Mom always beats herself up that she isn't the perfect mom, when she is. I always say, "c'mon, don't be silly." But now I have all of these doubts about how comforting I was to you when you didn't feel well. I worry that I was too cranky all the time. I have to remember doing things like running out to Sears right before they closed at 10 at night to get you an electric blanket because you were cold. Hopefully I am just being like mom but honestly I am a little freaked out. I think that because I have no more time with you that I sometimes focus on the times when I was too hard on you. It is pretty silly but I can't help it. One thing sticking in my mind was when we took that walk to the market right before we left for Minnesota. We had a really nice walk there but then you said you couldn't walk anymore and had to go to the bathroom. I wans't too happy about carrying you all the way home (hey, you're a big guy) and thought you were just manipulating me. Of course you had diahrrea the second we got back in the door. I screwed up. I shouldn't have doubted you and I am so sorry. Mom says that I sometimes did this because I was so hopeful. I didn't want it to be that you were in pain or not doing well. I am still so sorry. Coincidentally I went with Jack to Dr. Dana today. Her helper asked him,"how is your brother?" I think I looked at her funny and then said, "oh, his baby brother Joe is doing great, thanks." She walked out for a moment and then came back in and quietly apologized to me. Dr. Dana must have told her what happened. The good thing is she didn't feel embarrassed, which she shouldn't have been. Dr. Dana was sad. I told her how you finally did get those 5 teeth pulled when you were having surgery for something else. I didn't tell her how well you made out with the tooth fairies. You must have cleared $30 a tooth! Jack had another really tough time at the dentist. It was one of those times I wish he were just a tiny bit more like you. He got HYSTERICAL, I mean crying, thrashing, gotta be held down hysterical, when he was having his teeth brushed and flourided. Mom thinks that all of his problems like this and getting his throat cultured come from his experiences with you with doctors. She is probably right, but Jack has also been this way with baths and haircuts. It makes me feel really sad to see him so sad. I wish some of those things weren't so hard for him. I remember one time when they were changing your IV in the procedure room on the floor at Boston Children's when you were 6 months old for your heart surgery that you got so hysterical that you fell asleep in my arms in the middle of it all. You got so worked up were expending so much energy fighting the nurses that you just fell asleep. It was truly amazing. After the dentist I took Jack to Tae Kwon Do. I was a little nervous about going there because I did not want to cry when I saw Mr. Kim. He's a tough guy in a good way. Cindy was there. I asked her if there are any days that go by that she doesn't think about her sister, Jenny, who died. She said she thinks about Jenny every day but now there are days when she thinks about her and isn't sad. Cindy says some days will go by when she only thinks something happy or funny about Jenny. That is something to look forward to. Jack didn't want to do the class when we got there but after a watching Nicky-Picky and the other kids for a while he finally decided to join in. Cindy said that Jack can't be convinced to do anything; he has to convince himself. Mr. Kim came over to me and said how sorry he was and how much he enjoyed teaching you. I told Mr. Kim that one of your (and mom's and my) proudest days was when you got your first stripe. You were just so proud. You worked so hard and knew all of your white belt basics. I loved watching you in class with Mr. Kim. I am sorry about the days when you were too tired. You showed a lot of guts and Mr. Kim knew that and so did I. I can see in my mind you doing your form. Remember how we used to show Mom when she got home. How am I going to sleep. How am I not going to sit here and want to keep talking to you. What I really want to do is hold you. I love you so very much. The battery is almost out so I need to stop for now. I want to kiss you good night. I'll give mom a kiss and think of you. Please think of me and remember how much I love you. Love, love, love, love, love, love, love, love, Dad p.s. Norman said we can come look at the pictures he took of you at the beach. I want to put one on the top of this. Maybe the one where you are all wrapped up in my arms on the back deck. That is a nice one. I am glad we have that hanging up. I took it down when we got home from Minnesota and hugged it. I miss you. posted by Allen | Thursday, January 16, 2003 Tuesday, January 14, 2003 Dear Henry: I took this photo of you on Friday, September 13, 2002. You and Jack and I went to Johns Hopkins to show Dr. Chen the MRI from August 24. He was checking to see if the reason you had your convulsion was the medicine you were taking, Prograf, the little yellow pills. We never got those pills right. That is why we went to Minnesota. We stopped the Prograf and started CSA. I know this will sound strange to you, but I miss all of your medicines and all of the doctor visits. I just found a video in the junk drawer in the kitchen. It has Joe's birth and bris. I took the video of mom and Joe in the hospital to bring to you in the hospital so you could see your new baby brother. Do you remember how we busted you out of Georgetown just in time to visit mom and Joe in the hospital. You were back in the hospital for Grandma's funeral. We lived a crazy life didn't we.  I love you. Dad posted by Allen | Tuesday, January 14, 2003 Dear Henry: I did it. I went back to the gym and stopped in to say hello to Max at the ice cream shop. He cried and said you were the bravest boy he ever knew. Then I ran into Marsha on the street and she gave me a bunch of hugs. She said they have a photo on the wall of you having your first ice cream cone. I won't ever tell them that you really had your first cone in Annapolis when Uncle Bill gave you a few licks. We were at Nana and Papa Sy's old house with Bill and Cristina and Liz and Peter. Mom wasn't giving you and dairy yet, but Bill didn't know that. Hey, where is the combination lock I gave you? I had to buy a new one before I got to the gym. I used to think about you to inspire me when I went lifted weights. In my mind I'd think if Henry can take all of that punishment and come out strong and smiling, then I can work hard in the gym. Today my mind was just all confused. I'll figure it out. I love you my brave ice cream boy. I think about you every second of the day. Daddy posted by Allen | Tuesday, January 14, 2003 Dear Henry: Here is an email that Jack sent to Benji. He misses Benji a lot. Benji has a world class smile, like you. Dear Benji, I hope you come back soon from Morocco. Are you eating pigeons? The good news is that JPDS is moving to 16th Street. I rode a Vespa with my mom. I have my own off-road helmet. There is bad news. The bad news is when you come back you will be in 1st grade. Also, Henry died. Please write to me soon. From, Jack  At some point I need to talk to you about something that mom said to me. She said that you were ready to die this summer but waited for us to be ready. We had some really fun times together after August 24, so thanks. The fact that I pulled out your breathing tube on December 11 must have meant I was finally ready. This morning I was thinking back to the time you were teacher's helper back at the Gan last fall and they called me to come pick you up because you fell off the monkey bars or something. I was so not worried when I got there and saw the firetruck and ambulance were in the parking lot. You were keeping all of the emergency workers entertained when I walked in and brushed you off and took the oxygen mask off your face. You were so tough. We grabbed Jack and off we all went to buy some books and books on tape to forget about what happened. I went to a bookstore this morning and bought a magazine because I knew your picture was in it. I think I'll upgrade this site to one where I can upload photos so you can see the magazine and more importantly, I can show you pictures of mom and you can watch your brothers growing up. I am going to go take care of a million things I gotta do. I want to call and check and see how mom is doing at work. Love, Dad posted by Allen | Tuesday, January 14, 2003 Dear Henry: I am having scrambled eggs and used your salt shaker to put salt on them. I bet you are the only kid in Washington, DC with his own personalized salt shaker. I am so glad I bought that for you. I am also glad that I kept getting you chips and tortillas every day for lunch. Mom and I haven't gone to Cactus Cantina since you died. I think we are scared or something. Cactus Cantina must not understand why they now have so many chips left over at the end of the day. I bet the waitresses are wondering where you are. We also haven't been back to Max's Ice Cream since they got back from vacation. We are definitely too scared to go in there and see Max and Marsha. It takes a certain strength to be so sad and we are a little drained. Somebody, probably Debbie, must have told them about you by now so it might be a little easier. The gas station opened up again on the corner. I don't know why they didn't put something fun in that space instead. I guess it is a good thing that it isn't a Starbucks. I was thinking the other day that you were such a grown up because you liked going to Starbucks for hot chocolates and I was such a little kid because I don't drink coffee and have no reason to go to Starbucks. A lot of people have said you were an "old soul" which is a good thing. You were a wise, lovely grown up in a little boys body. Dr. Wagner always said you were a 30 year old disguised as a kid. Mom went back to work yesterday. It was hard for her. I came by and had lunch with her and then brought Jack over after school. She said her desk was just how she left it with photos of you and Jack and Joe and your artwork and notes all around her. Yesterday I went to Baltimore to meet some people and that brought back so many memories of last year. I started to cry just as I came to the exit for 695 north to Towson. Do you remember how stressed I used to get because we had to be there exactly one hour after you took your medicine. We never knew when there would be traffic or an accident. I am sorry we put you through all of that PUVA, but at least we got snow cones and got to play with that Hogwarts castle. Remember how you had to wear sunglasses to protect your eyes. You looked so cool. I know all of that was no fun for you. You never complained. I drove into the city and saw the science center -- I have to find the picture of you and the giant crab -- and the hot air balloon at Port Discovery. I am so glad we went up in the balloon. We went so high! We saw the whole city and we found the hospital from up there. That place had the worst elevators for being the world's greatest hospital. "You are in the Weinberg Garage, please take your ticket with you." Do you remember how you always brought the parking ticket up to the lady when we would be leaving. She'd give you some kind of candy, except I think she was out the last time we were there.  Mom and I have been talking about visiting the cemetery. We'll come see you soon. I can't believe you aren't in the next room. I couldn't sleep last night. I would look over at the clock and it would say 2:00, 3:00, 4:00 and I finally got out of bed at 5:00 and went downstairs and watched some TV. It is 7:00 am and I better go wake up mom and Jack. Jack doesn't want to go on the bus anymore. He also wants to quit Tae Kwon Doe and we took him to a birthday party this weekend and he wouldn't go in. He seems really sad so we aren't forcing him to do anything he doesn't want to. He'll come around when he is ready. I wonder how cousin Hannah is doing. She is like a sister to you guys and she was there for everything, like Jack. I'm gonna call Aunt Jen and check on her. Maybe she can talk with Jack. To be totally honest I sometimes get a little disappointed that Jack isn't more like you. You guys are SO different but were born so close together. I appreciate what is special about Jack and I know it isn't fair but I think what this is really about is how much I miss you. Last night for the first time in a long while Jack reminded me of you. Joe kept coming up behind him trying to grab him around the waist. If I didn't know any better I'd say he was trying to hug Jack. At first Jack couldn't be bothered but then he turned around and saw Joe had the big wiffle ball (the one you used to whack so far even though you like the smaller balls better) and realized Joe wanted to play catch. Jack took the ball from Joe and then threw it back to him. I am not kidding when I tell you that everytime he threw it to Joe he bopped him right on the head. Jack and Joe are genetic matches and Joe got the same rock hard head gene as Jack. Each bop on the head made Joe laugh. It was very cute. Jack was being so sweet with Joe and I couldn't help but be proud of him and think of you and how good you were with Joe. We had a desk built down in the basement. It should be finished today. Mom originally wanted it built for you to use for your lessons because you couldn't go to school. It is so cold out and I want so much for you to be warm. I love you so much, Dad posted by Allen | Tuesday, January 14, 2003 Saturday, January 11, 2003 Dear Henry: There is a new Pokemon Master Quest this morning. Today is one month since the night you died. We can go to the cemetery now. Actually, we are supposed to go out there in 2 weeks to place a headstone on Grandma Phyllis's grave. I will talk to Mom and we'll figure out when we'll come to visit. I don't know what it will be like. Sitting here on the couch I think that I'll want to throw myself down on the ground and hug the dirt, but I don't think I'll really do that. Yesterday there was a service at JPDS to celebrate your life. All of the kids love you so much. Love, Dad posted by Allen | Saturday, January 11, 2003 Thursday, January 09, 2003 Dear dear Henry: Mommy and I went to a movie tonight. Mom was really sad when we walked out. She was crying. I was really sad too but not crying. I was getting that strange feeling in my chest that I know is my broken heart. A lot of the movie (to me) was about a boy and his dad. They loved each other a lot. I was thinking that I could be an actor now. I can make myself cry any time a role called for it. I could do without that skill. Mom rode her Vespa today for the first time and I think that made us both pretty sad. It is something called bittersweet. It is nice and sad all at the same time. I think the rest of our lives are going to be bittersweet. You know it is like Passover when we eat the bitter herb as free people relaxing in our homes to remind us how hard life was when we were slaves. We don't need reminding how much we love you. I wish you could have put your arms around mom's waist and hugged her tight and gone for a ride on that scooter. Good night big man. I love you, Dad posted by Allen | Thursday, January 09, 2003 Wednesday, January 08, 2003 Dear Henry: I thought and talked a lot about you today. Mom and I went to Reed Electric in Georgetown and I thought about the time we were there at the end of October or beginning of November. You helped pick out the fixture for the hallway. You also helped pick out Zhenny. Zhenny is taking great care of Joe. He is a very happy baby. Remember how you used to make him smile and laugh in the minivan. I want him to know you. He won't. Maybe he'll read these letters when he gets older and he'll know what a great big brother he had. Jack is doing a good job as big brother now. I love you and I am thinking of you. Dad posted by Allen | Wednesday, January 08, 2003 Tuesday, January 07, 2003 Dear Henry: Another person at the conference Mommy went to was a rabbi. His name is Gerald Wolpe. He told me that he said a mishaberach for you when you were sick. He heard about you when we did the bone marrow donor drives a few years ago. His son is a rabbi too. His name is David Wolpe and he writes books. As it happens, Mom bought me one of his books called "Making Loss Matter." It is really interesting and helpful. Here is something he wrote. The times when we feel utterly defeated are the moments when we have the chance to see farther, to reach down deeper into ourselves, to acquire wisdom. It is the time to begin dreaming wise dreams. In another part of the book he writes, Superheroes of children's comic books are projections of the child's imagining the power to change the world. What that means, I think, is that you became Batman so that you could use your superpowers to make you not sick. It worked. When you were Batman you weren't sick. Mommy bought me a little swiss army knife, much smaller than your humonguous one, that she had engraved to say, "Batman Forever." It means a lot to me. I took your swiss army knife to this place that engraves things and I had them write on it "Jack -- With Love, Henry. I will give it to him, from you, when he turns 9 or 10 years old. One thing that I was thinking about the other day is how incredibly brave you always were when you went to have surgery. It was nothing to you, like you were being led away to get a haircut or something. But most kids and a lot of adults get really scared when they have to have surgery. And just because you did it so much didn't mean that you had to be brave or act like it was no big deal. You would say goodbye to me and Mom just like you did when we took you to school the first day. There were no tears, no looking back. You never knew how brave you were. I did. Mom did. We said goodbye to Sharon, Mark, Arleen and Zev. It was good to see them. Suzanne is going to come over soon to say hello. We gave her the blood pressure machine and we want to give her the new jog stroller for one of the kids at the clinic. I am sorry you never got to wheel around in that thing. I have to send your death certificate to Northwest Airlines to get a refund for the tickets you and I didn't use. I remember the flight to Minnesota. You slept next to me stretched out across the seats. We sat in the back to be away from people. I was afraid someone would get you sick. You didn't want to wear your mask because it was uncomfortable so I said okay. I bought you all of those Star Wars activities books at the JPDS bookfair right before we left. You liked doing the word find puzzles. Do you remember the ones that I made for you on the computer with the names of all of your cousins hidden in it. That was fun. You were really good at that and hospital bingo. I am sorry I didn't let you call in to tell your joke. The honest truth was that I didn't understand it. But it made you laugh and that made me laugh and I should have had you call it in. Oh well. I am a little sleepy now and I think I'll curl up and take a nap. We have your bears, the mommy and baby ones that we bought at Pottery Barn Kids, and your blanket and your Henry pillow on our bed. Mom and I each grab something to hold on to when we go to bed. I think I'll hold the mommy bear. You know I wish I was holding you. I love you. Dad p.s. I just thought of two things that we found so funny over the years. You did a great job doing different voices, and you were never grumpy or or boring. "You must be grumpy." Snow White to Grumpy "Spongebob, can you keep it down, I'm trying to be boring." Spongebob, imitating Squidward posted by Allen | Tuesday, January 07, 2003 Monday, January 06, 2003 Dear Henry: Sorry I haven't written but I have been helping Mom with something she was writing on the computer. She wrote a presentation to make to a bunch of really important people today. She talked about what we did to try to have another baby that had healthy blood to give to you. We want to make sure other families get a chance to do what we did and hopefully it will work for them. A lot of President Bush's guys were there and Dr. Rosenwaks, Dr. Auerbach and Mark Hughes were all there too. They miss you so much. I don't know if you remember Mark. We went to lunch one day with him at Mom's old college, "M Go Blue." His wife died when he was working with us and he went to his laboratory right after her funeral to help us. He is such a good person, and he told me today that he is so sorry that he couldn't save your life. He tried so hard and so did me and Mom. I am so sorry too. It was a little weird and nice and hard to see our friend Sharon who was here for the same meeting. Do you remember the meetings you used to go to with me at the coffee place by the Gan and David Segal's apartment. You were very helpful, you know that. Well, Sharon came here from Tel Aviv for this meeting with Mom and all of the doctors. You probably remember when we saw Sharon in New York with her husband Yavin and their little boy Amitai. He had the same problem with his blood that you had. Sharon -- you say "Shah-rown" the way you say the Hebrew words you learned in school -- had a baby with the help of Mark and Dr. Rosenwaks and her name is Alma. Doctors in Israel gave Amitai some of Alma's blood the same way you got your new blood in Minnesota from Beverly. It looks like Amitai is going to be okay and not have any of the problems you had. When Sharon spoke today to the doctors, she said that Henry Strongin Goldberg saved Amitai's life. You did. That is the best thing that any person can do. Saving someone's life and loving people are the greatest things we can ever do and you did both. I am proud of you. We will go visit Sharon and her family in Israel some time. I am sorry that you never saw Jerusalem. It is so beautiful. Yavin and Sharon planted a small grove of trees on a hill overlooking Jerusalem in your honor. I want to show you an email that Mom and I got from one of the teachers who helped in Aunt Tracey's class. Dear Laurie and Allen. Dec.31, 2002 My name is Elizabeth Aloni, teacher at Gan Ha Yeled at Adas Israel (the Chicks class). Last year, in a shabbat class celebration Henry came over as a special guest for Sam Strongin's. That was a very special day for all of us, the little ones were observing all Henry's motions and inputs. Anyway G-d bless his memory. What I want to tell you is that on that day, when we passed the Tzedakah box to collect pennies for charity, Henry said "this is very important, we should give this money to the poor children in Africa or Afganistan...." That was very sweet of you. You always thought of others (starting with me, Mom, Jack and Joe) and that was really nice and really grown up of you. It has been snowing a lot around here lately. You know the sun hasn't really shone since you died. There is a great song that says, "Ain't No Sunshine When She's Gone." I feel that way about you. I am not sure if the sun hasn't come out or I just feel that way. I feel like it makes sense the sun isn't shining, but I will be okay when it does finally come out. I am going to try and go to sleep now. Mom has one more day at the meeting tomorrow. I missed her a lot when she was there today and I was home. When I am away from her I get more sad about you, but that isn't a terrible thing really. I see you in Joe a lot of the time. That helps. I don't confuse you guys though. There was a Rabbi at the meeting today and he told a story about how he remembered a thing so clearly that happened when he was 6 or 7 years old. He looked like he was in his 70s so that made me feel good. It made me think that my memories of you will be clear in my mind too when I am in my 60s, 70s and 80s. I love you big guy. Dad p.s. Jack, otherwise known as Sir Burpsalot, is sleeping in our bed tonight and he cannot stop yakking even though everyone is trying to fall asleep. You were always like that too. Oh my god. Whenever I wanted to go to sleep you would just talk, talk, talk. The later it was the more you had to say. It was that way in the car, at the hospital everywhere. You know, thanks for doing that. I didn't know it then but it let us spend more time together. As for right now, I don't want to go to sleep, I don't want to say goodnight to you. I love you so, so much. posted by Allen | Monday, January 06, 2003 Saturday, January 04, 2003 Dear Henry: Somethimes when I read or type things said by someone else I can hear the other persons voice. So I am going to give it a try now with us. I pray it works. Goodnight Henry. I love you all the way to Uranus and back. Very funny. Goodnight Dad. I love your butt, too. You know, that worked. I love you Big Man. You are rock solid. Dad. posted by Allen | Saturday, January 04, 2003 Dear Henry: We saw your teachers when we went to celebrate Jack's birthday at school. Mrs. Berliant and Mrs. Newman and G'veret Epstein miss you so much. I think you were their favorite student. Most parents think this about their kids, that they're the most special and everything, but I think it is really the truth with you. I think you were the favorite patient, favorite student, favorite friend, favorite customer, favorite shopper, favorite everything. Believe it, Henry, believe it. Meanwhile, Jack and I are in bed watching the "last cartoon." I'm sitting on my side, otherwise known as your side of the bed. Mom went out with Pamela (Jeffrey Goldberg's wife) tonight to have dinner and talk. I called it a playdate. Mom's friends -- when they listen and don't try to solve unsolvable problems (in a loving way) are really helping her through "this" whatever it is. I swear I hope you are on a cool playdate with some of the other really neat FA kids who died too young. Maybe Grandma is chaperoning. We went out with Uncle Poopy and Cristina last night for dinner. When you learned to call us on the cell phone, you'd always call us a ton of times when we went out. That was very sweet and smart. Uncle Bill called today to let us know he had strep throat while we were at dinner. I told him how we took Jack to the doctor this morning and he has strep throat too. Jack has a lot of trouble with doctors, as you know. He wouldn't let them swab his throat. I told him how you were swabbing yourself when we were with Dr. Van Burik in Minnesota. Remember how you did that. She was so impressed, and so was I. You named her baby fish "Chilly" when we were in her office. Jack was scared of the doctor. Mom thinks that he might be scared that if he is sick he could die like you did. She tried to calm him down, but it was hard. I basically had to do a full body slam and the nurse pinched his nose so he'd open his clamped mouth. I drove down Canal Road yesterday and now whenever I drive on it -- which is a lot -- I can't help but think about the time this summer when you almost died. I drove 90 miles an hour down that road when Mom called me and told me that you were either dead or dying. I couldn't believe it. I needed to make sure that I got to the hospital in time to say goodbye to you. You recovered so fast that I knew you were indestructible and would live forever. Remember how I told you that you were now "Harry Potter, The Boy Who Lived." Just like Harry, your mother's love saved you from death. How could anything have been more powerful than that love. I don't get it. It makes no sense. Unloved people try but aren't killing themselves by supersizing McDonalds, Marlboros and Michelobs and your health fails you. Help me understand that. Yesterday I cried when I read the Adas Israel newsletter and they had your name with 2 or 4 others who died last month. Today I cried when I saw the JPDS weekly newsletter, Thursday Thoughts, the thing they'd send home in your folder for me and mom, and it had a little story right on the front page saying that you had died. There is something galvanizing about seeing it in print. Then mom showed me the Fanconi Anemia directory that came in the mail today and it had you listed as deceased. God they're fast. I told the pediatricians office today to take you off their computer as a patient. The woman asked me why and I said very impersonally that you were "deceased." That is a very cold and technical term that is the same as saying you died. The only people who I still think don't know are Max and Marsha. They closed the Ice Cream Parlor and took a month's vacation. I cry a little just imagining what it will be like to tell them Oh, how Max loved you. I looked at a lot of our videos of you and so many of them are at their ice cream parlor. There is a really good one when you rode your bike into the store and sat on it while you ate your ice cream. I am going to lobby hard for a Henry Flavor, it has to be sweet, delicious, healthy and covered in rainbow jimmies. I hope they're receptive. I know they'll be devastated when I tell them the news. Max so loved getting the recaps of your soccer victories. I just saw your bike is in the garage. I am crying now thinking about how lonely it is without you atop. Papa Teddy bought one for you and one for Jack. You were doing so great. This would be the spring when you'd finally take off all of the training wheels. This is the summer where you'd finally swim well all by yourself. You just never had the time to master all of basics of boyhood. We were so close. You know how lonely I am without you. I keep listening to this song called "Private Universe." I think you and I lived in one together. I love you. Our private universe is a lonely place without you. Love, Love, Love, Love, Love, Love XXXXXXXXXXXOOOOOOOOOOOOOOO Dad posted by Allen | Saturday, January 04, 2003 Friday, January 03, 2003 Dear Henry: I slept in your bed again last night from the start. I thought it would help Jack fall asleep without all of the drama. Guess what, I was right. He really didn't make a fuss and fell asleep at a reasonable hour. Yeah. I have to go get cupcakes for Jack's class. They are going to celebrate his birthday. Love you. Dad posted by Allen | Friday, January 03, 2003 Thursday, January 02, 2003 Dear Henry: I just opened the mail that had your death certificate(s) in it from Minnesota. It is very "official" looking. I saw that you were born in Washington, DC and that you were never married. The place of death is Hennepin County in Minneapolis, Minnesota. The day you died was December 11. It is a little messed up because they wrote Fanconi "Edema" not "anemia" as the underlying cause of death. I wonder if we need to fix that. We're the only ones who would ever care. I'll talk to mom. It lists David Cornfield (isn't that a great name) as the physician. He was great and really helped us at the end. I am sorry that you were unconscious when he was your doctor. You would have liked him. Today we were in the car and I thought about something that made me really sad right after you died. A while ago, probably when you went to transplant, I had what I thought was a great idea. When you got to be older and you had a break from high school or college, you and I would take off for a few months and hike as far as we could on the appalachian trail. It would be a time for us to be together and to kind of say, look we beat Fanconi anemia. Oh well. Simon and Alex are downstairs playing with Jack. They're making a whole lot of noise. I am hiding upstairs writing to you. I better go help mom. I love you. Dad posted by Allen | Thursday, January 02, 2003 Dear Henry: So last night we had Jack sleep with mom and I got to sleep in your bed. Yummy. I watched a DVD (South Park) under the covers in your honor. I felt you with me. This morning we took Jack to school. There has been so much rain that Rock Creek is overflowing its banks. I wish you could see it. Remember how dry and low it has been. I loved our trips through the park to and from school. I loved picking you up whenever you would call to say you were tired. I especially love the little space in the office where you used to sleep. I saw Marrisa and Madison when we got there and Madison asked me where you were. I got a little flustered and finally said, "Henry died." That was hard. She must have forgot, or was being REALLY hopeful. Mom and I said hello to Mrs. Singer too. They're going to have some kind of service or ceremony to remove your desk from the classroom at the end of the one month mourning period. I envision Marines doing it and handing us a triangular folded flag. Of course that won't happen but whatever they do will be sad and strange. Today Mom and I are bringing the minvan in to get fixed. We haven't used it since Mom and Jack left for Minnesota and it doesn't start. We've been using the punch buggy all of the time. I'll always think of our 3 hour commutes to and from Baltimore for our 5 minute appointment at Hopkins. We always had good DVD's and good tunes for the road. I took that part of my job seiously. I should have been a little better at teaching and time management. I wrote to Dr. Morison's office to let them know what happened and Judy is so sad. I also emailed Dr. Jacobsohn at Northwestern but no response. Huh? I miss you and I love you so much. So far no real crying today, but it is early. Dad posted by Allen | Thursday, January 02, 2003 Wednesday, January 01, 2003 Dear Henry: It is a new year. The first in 7 years without you. We went to Uncle Andy and Aunt Abby's beach house with everyone, Michael, Rachel, Emma, Joshua and Sam for the past two days to celebrate the New Year. All the cousins were as crazy as ever. They need your calming influence. Everyone misses you a lot. I didn't want to go, but we need to be fair to Jack, who wanted to see all of your cousins. We had an okay time, but Mom and I cried the whole time we were there. I was thinking back to the time this summer when everyone went to the beach and you and Emma and I stayed back at the house and hung out around the pool. Remember that time. It was really nice. You swam in the pool with the great Speedo vest. You and I took naps and had a lot of quiet time together. I cannot believe you are not here. I cried today when I saw an ambulance come to help someone at a store. She worked there and wasn't feeling too well. It made me think of you and I got so sad. Joe is being very cute. He continues to remind me of you. Uncle Andy thinks he looks like Jack back when Jack was a little guy. Joshua is going to be 4 years old this month. I told Mom that I couldn't believe you were 4 when we first went to Minnesota. She said that you were always very grown up for your age. She is right. I am glad you were so grown up. Jack and Joe and I went to Wal Mart yesterday. You loved Wal Mart and Target. Mom got you a Target credit card and put it in your wallet. I wonder where the little Target dog is that I got for you in Minnesota. Do you remember how we put the picture of Mom in the holder around its neck. It is very cute. Just like you. Jack is in our room right now and he won't go to sleep. He has to get up early and go to school for a full day for the first time since you died. I don't know how to get him to go to bed. In fact he is getting me so frustrated that I am going to just sit back, say nothing and let Mom handle it. I don't want to get upset with him because I know he is just scared and sad. Oops, Mom just made me put Jack to bed. She lost her patience. What a switch. I carried him to his bed and snuggled with him and tried to talk to him, but he wouldn't talk. I suggested to him that he count sheep as a way to fall asleep. I wish he could meditate the way you used to do with Dr. Mendelson. It was great the way you would sit on your bed and rest your arms on your knees and say "ommmm." You even did that when we were in Minnesota. I cannot help Jack right now 'cause he won't talk to me. He has walked back in our room and is jumping up and down on the floor of our room and making things fall. I wish you could talk to him. Mom says she'll take him back to his room and try snuggling. Let's wish her/them luck. I don't feel much like celebrating anything. The New Year meant nothing. Jack's birthday party is this weekend and there'll be a lot of screaming, crazy kids in the house (a lot who I won't know) and I am not too psyched about that either. I don't especially want anyone touching your stuff. Maybe they won't. I'll hide the Pokemon. But I need to be good and fair to your brother. We're going to talk to Wendy at the clinic to see if she will talk to Jack about how he is feeling. He has bad dreams just like me. One good thing to report is that it has been very warm. It was 70 degrees at the beach yesterday. You would have loved it. Mom got you a new blanket for your bed. It looks really warm and comfy. I wish I could go in there and snuggle with you now. I miss you big fella. Please feel me hugging you. Love, love, love Dad posted by Allen | Wednesday, January 01, 2003 |
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