Letters to my son.
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| Dear Henry Letters to my son. |
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Wednesday, June 30, 2004  Hey, guess what. We got the fish tank out of the garage and cleaned it out. Jack got it in his mind that he wanted to have fish again. We bought new gravel and all of these great Spongebob things to put in the tank. There is a pineapple - Spongebob's house - and Patrick's rock that he lives under.  Patrick's rock is a bubbler and it opens and closes. Very cool. We put in 2 Tetra fish and if they survive for a week or so, we'll buy more. I think Jack named them Tetree and Tetroo. He know which is which. Of course, all of this reminds me of when we bought the fish up in Minnesota for our hotel room to make it more of a home, and the fish tank in the clinic and the one in Dr. Van Burik's office. Uncle Dan left this morning. Last night Jack had a sleepover in the basement with him and the fish. They read for a real long time and then fell asleep. It was very cute. 
posted by Allen |
Wednesday, June 30, 2004
I've been transfering all of the videos of you to DVDs. I am seeing a lot of you lately. These videos are great and also very hard to watch. Last night I was doing the one of you at your last birthday. It was you and Jack and the magician and no friends because you couldn't risk getting sick. I think Beth might have been one of the people who arranged for the magician. When I was watching I realized it was the last video that I ever took of you. I had to label the DVD and I called it "Henry's Last Days." That didn't feel good. When I am done I am going to copy the DVDs and put a set in the safe deposit box. I am then going to try and make some kind of movie of your life. A best of Henry DVD. Those movies, and these letters and Mom's book will let Jack and Joe know you better. Joe was wearing big boy underpants today. I'm pretty sure they were yours, Harry Potter.  This is you - probably early in your underpants wearing life. Mom and Jack saw The Prisoner of Azkaban. They loved it. I guess I'll have to wait until it comes out on DVD. J.K. Rowling, the woman who writes the books, is in the middle of writing the next book which is going to be called "Harry Potter and the Half Blood Prince." I'll let you know what happens. I love you Henry. posted by Allen | Wednesday, June 30, 2004 We went to the funeral and the burial today. It seems like the same friends and family are just moving from funeral to funeral. The funeral was at Tifereth Israel synagogue. I used to work there as a USY advisor before you were born. I'll explain what USY is later. Walking in to the synagogue today there was a box that was in the front lobby for people to give toys to children on the Hematology/Oncology floor at Children's Hospital. That got me appropriately sad. Oh yeah, we got a letter from Dr. Jonas, your heart surgeon from Boston Childrens Hospital. He is the new head of cardiology at Georgetown. That would have saved us a trip. Only 8 years late. At the burial Mike was the first to shovel dirt on Ethan's grave. I could feel inside me exactly how I felt when I was shoveling dirt on you. I was angry and sad and strong all at the same time. I wanted to shovel all of the dirt onto you all by myself. I could see some of that in Mike. It made me cry. Henry, I feel so bad for him and for Beth. Big Michael was there. He said that people always say, "parents aren't supposed to bury their children." None of us believe that anymore. Papa Sy said, "Funerals give me a headache." I'm with him on that one. When I was at the cemetery, which is different from where you are buried, I was scouting out the good places to be buried. There were some beautiful trees. You know that the spaces where you are buried are called "plots." I asked Mom if for Jewish cemeteries it should be spelled "plotz." Plotz means to burst with emotion. Beth just buried her mother last week in Minneapolis. Beth told us how either she or her mom had been married at the Calhoun Beach Club where we all lived when you were up there for your transplant. I couldn't believe that Beth had to bury her mom and her son in one week's time. That is unbearable. posted by Allen | Wednesday, June 30, 2004 Tuesday, June 29, 2004 Hen, I am terribly sad. I am sad for Beth and Mike. Their son died. He didn't want to live anymore. Mom is terribly sad, too. Mom and I are going to go to the funeral tomorrow. You loved visiting with Beth and you loved the way she said "Oh Dear." You would walk around saying "Oh Dear" all the time. You don't remember this but when you were one year old we went to Martha's Vineyard, which is an island off of Massachusetts, and stayed in Beth and Mike's house as a little vacation before one of your surgeries in Boston. We had such a great time there together. It was Rosh Hashanah.  You, Mom and I went to tashlich services at Lambert's Cove and it was one of my favorite memories of us together as a family. We were on a beach - very different from tashlich in Washington, DC - and a young girl just fell in love with you and played with you on the sand. Beth and Mike were very generous to us with their house and their love for you. I feel terrible that they have to go through this. We went to the cemetery on Sunday. It was a great visit. The weather was perfect. Jack was with Matthew at his swimming pool. Mom, Joe and I hung out for a long while. Mom and I cried at different times just thinking about you. Emma and Sam left you little notes tied up in the tree next to your grave. I left a bunch of your little guys - a tiny race car, a Pokemon coin, a Charmander and some other things - next to the headstone. I stomped them into the ground a bit so the lawnmower wouldn't eat them. I hope they are still there. Uncle Dan is here. He flew in yesterday in his plane and I picked him up at the airport not too far from where I work. It is nice to have him here. He and your Hannah just flew up to Seattle and went camping. He is a really cool dad, and a great uncle.
posted by Allen |
Tuesday, June 29, 2004
Saturday, June 26, 2004 Photos of the day.   posted by Allen | Saturday, June 26, 2004 Thursday, June 24, 2004 I was just telling Matt Paul about the funny looks we used to get from other parents at the playground when you would cruise through the monkey bars when you were only 4 years old.  Your muscles were made stronger by that medicine you were taking, Anadrol (those tiny white pills) and you could do things that other kids your age couldn't. I remember one mom in New Jersey asking, "Just how old is your son?" You were on the small side which I think added to the confusion. Strong Baby Is Called a Normal Kid June 24 By MATT SURMAN, Associated Press Writer BERLIN - A genetic mutation made a Berlin 5-year-old extra strong, but the German doctor who has been studying the boy since just after his birth says he's just a regular kid. The boy doesn't stand out among his peers on the playground, but when he puts his mind to it, he can perform feats of strength, said Dr. Markus Schuelke. "He's a normal boy — you don't see it, you wouldn't recognize him" out of a crowd, Schuelke said. "He can just lift heavy things." Schuelke started studying the super-strong boy after he was brought to Berlin's Charite hospital shortly after birth because he was twitching. That turned out to be nothing, but Schuelke, a pediatric neurologist, found that even though the boy was well within normal birth weight, he was particularly muscular. Schuelke began conducting tests and found over the course of five years that the boy had a genetic mutation that boosts muscle growth. It is the first human case where a mutant DNA segment was found to block production of a protein called myostatin that limits muscle growth, though researchers discovered in 1997 that they could create mega-mice by "turning off" the gene that directs cells to produce the protein. Schuelke, who worked with researchers from the United States, wrote about the case in Thursday's New England Journal of Medicine (news - web sites), where he said the discovery could possibly help in the fight against muscle diseases, like muscular dystrophy. The boy, whose name Schuelke has promised not to divulge, has muscles twice the size of other children his age and half their body fat. He was born to a muscular mother, a former sprinter. Her brother and three other relatives were also very strong — one a construction worker with a talent for hefting curbstones. Schuelke said scientists have no way to tell how common the boy's ability is, or if a legion of super-strong tykes will be discovered now that researchers have learned what to look for. "How should we know?" Schuelke said. "We have the first case so far."
posted by Allen |
Thursday, June 24, 2004
When I was driving home last night I was listening to a special on XM radio that was playing the 100 greatest songs from the movies. The first song I heard was "Maria" which is from a musical West Side Story. I love the song and the movie. The next song was from a movie called Rocky, which is the story of a boxer - a man not a dog. I was feeling really good from hearing "Maria" and got excited for the Rocky music. But when it came on I just burst into tears. What, huh? I wasn't prepared for that to happen. I tried to figure out why and the only thing I could think of is that when the music to Rocky started to play I began to picture you with your punching bag in your hospital room. We had gotten you the punching bag and gloves to keep you active when you were in for transplant. Then when we went back the last time, we requested a bag and gloves again. The number one song in the movies is "Somewhere Over the Rainbow." It is hard to argue that one. After I got home, Mom and I took Liam back to his house. Liam and Jack had been playing with your R2D2, the one we bought when we broke out of the hospital for a day back in Minnesota. Remember how it would beep and talk and roll across the floor. I think it is still working on the same batteries that we put in for you. When we were leaving our house Liam asked if R2 could go for the ride back to his house. Liam's mommy and daddy are in Seattle, where Liam's mom had a bone marrow transplant last summer. Mom and I made two stops on the way to Liam's house. One was to pick up a pizza for one of the teachers from JPDS, who is home on bedrest. She is going to have twins soon and her doctors told her to stay in bed. When we got to 2Amys, which is next to Cactus, we ran into my friend Matt Paul and his wife and their son Jake. Matt has been coming over to the house every week or so to sit and talk. His son Julien died in March. Julien had a transplant just like you. It was nice to see Matt's family out. They live not too far from Cactus. After we visited for a little bit we went and dropped off the pizza. G'veret Epstein was there. Finally, we got to Liam's house and he brought R2 in to show his nanny. With all of those errands taken care of, Mom and I motored over to Adas Israel for the evening's main event. There was a Engagement Party for Rabbi Winnaker and Doctor Mendelson. I saw one of the doctor's from the 5th floor at Georgetown who used to take care of you all the time. He is very nice and will be taking over as Chief Resident when Dr. Mendelson moves to New York. Dr. Mendelson introduced us to her parents as "Henry's parents." I liked that. She is one of the great ones. I wonder if the story of them "meeting" at your funeral will be in any of the toasts or whatever is said at the wedding. It was a pretty Henry emotional day for me yesterday. It all started when I read a story in the newspaper about a 13 year old kid named Mattie Stepanek who died at Children's Hospital. I had seen him on TV a little while ago. He was a poet. He also had a pretty bad disease called Muscular Dystrophy. His motto was "Remember to play after every storm." That made me think of you and the Hope for Henry Foundation. This is the "vision statement" that Mommy wrote for the Foundation.  The Hope for Henry Foundation (“HFHF”) was established in 2003 to create a legacy for Henry Strongin Goldberg, who died at the age of seven from Fanconi anemia, a rare, fatal genetic disease. During his short life, he taught his family, friends, doctors, and all who came in contact with him how to live well and laugh hard – even as he battled a terrible disease. Henry embraced each opportunity for living completely and reminded the rest of us to do so. His sparkly eyes, mischievous grin and infectious smile taught us the importance of maintaining normalcy within the family unit in a life fraught with illness and uncertainty. He had ice cream for dinner and transitioned from the hospital to running a lemonade stand in a matter of minutes. He did all these things because at that moment in time he could – and because he knew enough to go when the going was good. HFHF will continue Henry’s magical way of making each day matter. I never knew that so many little kids die. I am really not feeling up to playing or lemonade stands right now, but I will get it together. I love you. posted by Allen | Thursday, June 24, 2004 This is from the Fairview website. Mom was up talking to the doctors and nurses while you, Jack and I went down to the Turtle Derby. You were in love with the Minnesota Vikings cheerleaders. Two of them in particular, I recall. I think I know where those photos are. I need to ask Mom. We had a Hope for Henry Foundation meeting at Georgetown last Friday. It made me feel so good to see everyone come out to honor you. (Rabbi) David Abramson and Dr. Wagner were both there but I didn't see Dr. Wagner. Do you remember David's son Louie? He was there too. The Foundation is going to get cool gifts for kids who are being treated at Fairview and Georgetown. Stuff you would have liked. 2004 Turtle Derby will be held June 24, 2004 When children come to Fairview-University Children's Hospital, they are given more than the best health care available. They also receive lots of attention from people who make their stay as comfortable as possible. Weekly family activities, weekly television shows for kids, videotapes and specially equipped wagons for those who can't walk are just some of the special touches provided by the Child Family Life Services staff to care for children their families. Those "extras" often cost money, however, and that's why Turtle Derby is so important. Since 1987, this annual fundraiser offers fun for everyone. Hospitalized children and their siblings enter turtle drawings in a competition to draw the year's winning turtle design. Turtle sponsors watch their favorite reptile compete for the coveted title of "The Grandest Turtle of All." Clowns mingle with the crowd. Balloon bouquets brighten the stands. The smell of bratwurst on the grill wafts through the air. Commemorative t-shirts featuring the turtle drawings are sold and music plays. The 18th Annual Turtle Derby, turtle races held each summer to raise funds for projects benefiting kids and their families at Fairview-University Children's Hospital, will be held Thursday, June 24, on Diehl Plaza on Fairview-University Medical Center's University campus.  “George,” this year’s winning turtle artwork, was created by Mathew Odette, 6. Funds raised through the 2004 Turtle Derby will be used to help create a positive Pediatric Radiology experience for children. A medical playroom featuring child-sized radiology equipment models to familiarize children with exams through exploration and play will be established. Various enhancements designed to relax and entertain children during radiology exams will also be purchased, including video glasses enabling children to watch videos during their procedures, equipment that projects images onto radiology scanners to entertain children, and a portable distraction station featuring fiber optics, aroma and bubbles. Since 1987, this annual fundraiser offers fun for everyone. Join us!
posted by Allen |
Thursday, June 24, 2004
Photo of the day.  posted by Allen | Thursday, June 24, 2004   The XM race car came to work yesterday. It was really cool, just like Truck Day at the Gan. Jack and his buddy Liam came to check it out. Liam's dad works at XM too. They had a great time. posted by Allen | Thursday, June 24, 2004 Tuesday, June 22, 2004 Photo of the day.  posted by Allen | Tuesday, June 22, 2004 Sunday, June 20, 2004 It's Father's Day. You made me a dad. I am thinking about you all day. I love you. Old Danny Boy Songs For Kids Little Old Records 1998 Wake Up Little Henry Wake up little Henry, wake up precious Henry child Wake up little Henry, sweet and gentle, strong and wild No matter what the weather, you're our greatest treasure Words can never measure the sweetness and the pleasure When we wake up little Henry boy, and see you smile Wake up little Henry boy, and I see that smile Wake up little Henry, wake up it's a brand new day Wake up little Henry, time to feel the warm sun's rays You seem to comprehend me, so holdin' in my memory The feelings that you send me in the morning time is when you Wake up little Henry boy, it's a brand new day Wake up little Henry boy, it's a brand new day Came along right on time and we're so glad You changed a husband and wife into mom and dad Wake up little Henry, wake up precious Henry child Wake up little Henry, sweet and gentle, strong and wild No matter what the weather, you're our greatest treasure Words can never measure the sweetness and the pleasure When we wake up little Henry boy, and see you smile Wake up little Henry boy, and I see that smile I still don't understand how that guy knew to write such a perfect song about you never having met you.
posted by Allen |
Sunday, June 20, 2004
Saturday, June 19, 2004 School ended for Jack on Thursday. Neither Mom or I went to the graduation ceremony. That was just too darned sad when you were alive. I remember the last one where you looked so sick next to all of your classmates. You never really looked sick to me day-to-day. But that was particularly hard.  Your brother had a good year and brought home a great report card. One of the fun things he did was go spelunking. That is him, second from the right. Pretty cool, huh.  Joe Joe starts at the Gan in the fall. Boy is that going to be emotional. I always cried at Shabbat Sing. It will be hard at first, I am sure. The only truly sad thing is that Aunt Tracey isn't going to be his teacher. She has a different class. Oh well. I am sure she'll look in on him to make sure he is okay.  He is getting very grown up. I love you big man. posted by Allen | Saturday, June 19, 2004 Photo of the day. Beautiful, funny boy.  posted by Allen | Saturday, June 19, 2004 We need to do a website for the Hope for Henry Foundation. I need to get started on that. Jack is really good at using the Internet. Today we went to a website to get tips on playing Super Smash (Mario) Bros. He was having troubles with his jumps. He got really hysterical because he couldn't jump across something or another. I wasn't too sensitive to his "pain" because I thought it was a silly thing to get upset about. Instead of totally "poo-pooing" (not poop-related) him I told him to look for a solution on the Internet and we did it together. It worked out well. The Web is a pretty cool thing. Remember that we found the "Blog" written by that woman studying seals in Antartica. The photos were so cool. We checked back each day to see more. That kept us busy for a good 5 minutes in the hospital. That is how Hanging with Henry and these letters got started. I wish I had begun way before that.  July 11, 1996, Thursday An Infant's Struggle Megan Rosenfeld and Joe Spencer One of the most heart-rending home pages we've seen is the one dedicated to Henry Strongin Goldberg, an 8-month-old local child with Fanconi's anemia. This rare genetic disorder (one in every 100,000 births) is a precursor to bone marrow failure and the likely onset of aplastic anemia and leukemia. His parents, Allen Goldberg and Laurie Strongin, started the page to raise money for research and to connect with other parents and well wishers. So far they have collected $ 68,000 for the Oregon-based Fanconia Anemia Research Fund Inc. They've also gotten much e-mail encouragement. "It was like a message in a bottle that we cast into the cyber-sea. The response has been incredible," Goldberg says. Henry's Home Page includes articles about the disorder and the support group, and some very cute pictures of Henry and his parents. One of the articles is about a procedure that has helped extend the lives of other Fanconi patients. It is a cord blood transplant, in which blood from the umbilical cord of a newborn is transplanted instead of bone marrow to renew the immune system of the Fanconi sufferer. Goldberg and Strongin had hoped that their second child, who is currently in utero, would be a perfect match for a transplant for Henry. The good news, they learned recently, is that the fetus is not carrying Fanconi's anemia; the bad news was that the baby is not a genetic match for Henry. However, there are five perfect matches in the national registry of frozen cord blood transplants, and he will be able to get one when it is medically appropriate. The Food and Drug Administration has recently proposed to regulate this cord blood as though it were an experimental drug, and advocates of the procedure oppose this, saying that such regulation would make it far more difficult for most patients to get it. Henry's Home Page includes material about this debate and a request for readers to lobby the FDA. (July 26 is the last day for comments.) Goldberg, who is the official webmeister at the National Association of Broadcasters, said he has learned an enormous amount from using the Internet, especially after Henry was first diagnosed and doctors were deluging them with technical information. Henry has already survived heart surgery to correct a hole that was a result of Fanconi's. He was also born with an extra thumb; many children are born with more severe abnormalities. Except for that, and a somewhat small stature, he is developing normally, and his father says he "has a smile too big for his face." posted by Allen | Saturday, June 19, 2004 Ray Charles died last week. He (among others) sings "Over the Rainbow" from the Wizard of Oz. I always cry when I listened to that song. Once we were driving outside of Cleveland - I think we were on our way to Minnesota for transplant - and I was listening to a CD I made with that song on it and crying and crying. Mom and you guys were probably all asleep or something. I played a different version of that song for you in your room in the PICU. Israel "Iz" Kamakawiwo'ole is the guy who sang that one. I don't know if you heard it or heard anything. I hope you did. They did a story on TV about how loud hospitals are and how it is hard to get better because of all of the noise. You can watch it. We never got any sleep with all of the beeps and alarms going off all night. That was no fair. The story talks about that and also says that nice music helps you get better. We tried. One thing that I want to do with the Hope for Henry Foundation is give XM radios to all the kids going through transplant. I think that XM Kids will be a lot of fun for any kid sitting in the hospital. Aside from fun songs like Poop Goes the Weasel, XM has bingo, just like the hospital bingo you used to play on Thursdays in Minnesota. I went to Chicago this Saturday for the day last weekend. It was a meeting of Fanconi anemia families that raise money for research. Mom and I definitely think it is important to continue to help and make sure that it is easier on all families that come after us. I hear from Dr. Auerbach that Memorial Sloan Kettering Hospital in New York is having a lot of success with tough Fanconi anemia transplants. I hadn’t really thought about the meeting much before I got there. When I walked in I was surprised to see Molly’s parents. I like hanging out with Molly’s dad, Jack. He is a super guy and I wish I talk to him more. When we all went around the room to introduce ourselves, everyone said who they were, who they were married to and who were their children. When we got to me, I said I was Allen Goldberg, and I am married to Laurie Stronging, but I just couldn't say your name. It wouldn't come out. Tears were all ready to come out but not your name. I just couldn't do it. I pointed to the man next to me hoping he would just continue by introducing his family and he did. I am sorry. The thing I wanted people to know the most was that I am the father of Henry Strongin Goldberg, Jack Strongin Goldberg and Joe Strongin Goldberg. They gave everyone who was there a handbook with ideas how to raise money. I looked through it and saw all of these things that we used to do. One time Dr. D'Andrea came and spoke at Aunt Abby and Uncle Andy's house. Also, we did one of the first celebrity charity auction on Yahoo. And there was one fundraiser where everyone had dinners at their homes, invited friends, watched a video about you and then joined up later at Temple Sinai. That was a good one. You had a great time. February 11, 1999, Thursday, Final Edition For-Giving Technology Shannon Henry A Washington technology executive is using everything he's learned about computers and networks in a personal project that couldn't be more important: saving his son's life. Allen Goldberg of VarsityBooks.com launched an online charity auction yesterday to raise money that will go toward researching Fanconi anemia, a rare disease that his 3-year-old son, Henry, has had since birth. Hosted on Yahoo and running through Feb. 24, the auction is a philanthropic version of the now ubiquitous commercial online auctions. Yahoo entered the auctioneering business in September and has so far held 20 online charity events. It holds the auctions for free for those with a nonprofit status, says Karen Opp, Yahoo Auctions Producer. Those who log on to Yahoo.com and click on its auctions section can bid on 100 or so items that Goldberg now has in his basement, including a jacket formerly owned by singer Mary Chapin Carpenter and a tennis racket signed by Gabriela Sabatini. Goldberg hopes the auction will raise $ 7,000 to $ 10,000, all of it to go to the Fanconi Anemia Research Fund in Eugene, Ore. "It lets us reach as many people as possible," says Goldberg. When Henry was born and diagnosed with the disease, Goldberg, then Webmaster at the National Association of Broadcasters, used the Internet to research what is still a little-known condition. Only 1,000 or so people, mostly children, have the disease. Soon after Henry's birth, Goldberg and his wife, Laurie Strongin, created a Web page, www.hsg.org, to keep friends and family updated on his health and encourage donations to the Oregon group. About $ 150,000 has so far been raised through the site. Children with Fanconi anemia are usually born with myriad birth defects. The genetic condition can cause bone-marrow failure; the life expectancy for a child with Henry's type of the disease is four years. "The clock is ticking," says Goldberg. posted by Allen | Saturday, June 19, 2004 I was stopped next to a cement truck this morning. You always would say "'ment truck." I never stopped next to one before. They make a loud racket. It sounds like there is a full of pebbles in there going round and round. When we were kids we had something called a Rock Tumbler that took ordinary rocks and polished them until they were really smooth. We still have your smooth rocks. You were never really into trucks and cars the way Simon and Ari were. The XM race car is here next week and I am getting Jack and Simon and Ari to come by and check it out. Should be very cool. I'll post pictures.
posted by Allen |
Saturday, June 19, 2004
Friday, June 18, 2004 Photo of the day. Ride 'em cowboy!  posted by Allen | Friday, June 18, 2004 Thursday, June 17, 2004 Photo of the day. You were such a happy kid.  posted by Allen | Thursday, June 17, 2004  Thu, June 17, 2004 Hospital champ misses her day Dying teen fought for new children's facility By KRISTEN ENEVOLD, CALGARY SUN Janelle Redekop should have been at the new Alberta Children's Hospital site yesterday, smiling while Premier Ralph Klein helped pour the last of the cement for the facility. Instead her family was planning her funeral, reflecting on the hours she spent in the community raising awareness for the aggressive blood disease that eventually claimed her life. "Janelle took a lot of interest and pride in that hospital," said her dad, Jack, going over pictures of his 14-year-old daughter. "She had an amazing outlook on life because she always thought her condition was a blessing, since she was able to do so many things she never would have otherwise." Janelle died in a Minneapolis hospital last week, shortly after a bone marrow transplant and a long battle with Fanconi Anemia. She was only 10 when she became the Alberta Children's Hospital's Champion Child, and between blood transfusions and countless hospital stays, Redekop appealed to the public for donations to the yet-to-be-opened facility. "She was a real firecracker and was really active in fundraising," said Klein. All that fundraising, coupled with good weather, has put the $200-million facility in the city's northwest three months ahead of schedule. It's now scheduled to open in August 2006. "This is great news for the people of Calgary and many others across the province," Klein said. "Everyone involved in this project can be extremely proud -- this hospital started as a dream and a vision, and it took a lot of hard work to make this happen." Part of that hard work involves making the hospital a place where children don't feel threatened, said Marcus Desireau, one of the youth advisers for the project. "The drawings make it look like a very friendly place," he said, noting that the hospital's open concept plan calls for lots of windows with views of the mountains, the river valley and Nose Hill Park. And if the atmosphere is anything like the one Janelle experienced at the current children's hospital, said her dad, then countless kids will be in very good hands. "Everyone was so good to us during our time there," said Jack. Although Janelle had been sick most of her life, her death was still a surprise for him, his wife Tannis and their two sons, Jon and Jay. "We were all together and we said a final prayer -- we said that if it's time for her to go, we understand, and Janelle would have told us the same thing." Janelle's memorial service will take place in Calgary tomorrow.
posted by Allen |
Thursday, June 17, 2004
Wednesday, June 16, 2004 I want to post a photo of the day on here. I will just keep going until I run out. Here is one I haven’t ever shown you before. To infinity and beyond!  I want to protect every photo and video that I have of you. We put CDs full of Henry pictures in the safe deposit box in the vault at the bank. Think Gringotts. I bought this machine that copies VHS tapes of the news stories about you and our home movies to DVDs. I wish I had taken more movies of you, but I thought we had all kinds of time. I thought that it was good enough to capture the big stuff like birthdays and vacations when I wish I had worried about the minutes and the everyday stuff. I really wish I had interviewed you – asked you all sorts of questions – in addition to just capturing you blowing out candles on your cake or going to school for the first time. I wish I had asked you questions about things you liked to do, about Bella, about school, about everything. I hope that when Joe is ready he’ll be able know his older brother by looking at the photos, watching the videos and reading these letters. I hope that he’ll love you and be proud to be your brother. I was very excited when I took the DVD maker machine out of the box and hooked it up to the movie camera. When I pushed the record button nothing happened. I called the company and they told me the machine was broken and I needed to send it back to get a new one. Our scanner that I bought to scan all of your great artwork and every other Henry thing that will fit on its bed seems to be broken too. That was one of the many things breaking or not working right that has me "unsettled." One of the things that worries me the most is the portable DVD player. When you put in a DVD it doesn’t play. I had to send that thing out twice for repair, once when we were in Minnesota and once in Hackensack. The great thing is that there was a Sony repair center down the road from the hospital in New Jersey. I contacted Sony about getting it fixed again and they advised exchanging it for a different one for almost $900 (that's a lot of Pokemon cards). I have what they call “emotional attachment” to that DVD player and could never think of exchanging it for another one. We got that just after you went to transplant in 2000 and it was with you for every hospitalization from Minnesota to Hackensack to Georgetown and back again. There was nothing like holding it up above your head so you could watch it while you were in the CT Scan machine. Too bad you couldn’t have anything metal in the MRI. Things. First there was losing you. More than I could bear. Now I don’t want to lose the things you wore, the things you used, the things you touched. That is why I don’t ever want to move. posted by Allen | Wednesday, June 16, 2004 Jack did this on KidPix at school. Tomorrow is his last day. Does what he say in the picture surprise you? I think he'd be a great doctor, piano player, teacher, whatever or all of the above.  posted by Allen | Wednesday, June 16, 2004 Tuesday, June 15, 2004 It has been a long time since I have written you. I have been thinking of stuff to tell you and writing notes to myself all this time. I even had one post that I wrote to you about Joe splitting his head open and going to the hospital, but that seems to have disappeared. Here goes.  This was Jack last night. Does that shirt look familiar? I was in his room and there are piles of clothes that Aunt Tracey gave back to us now that they are too small for Sam. I am psyched that your shirt is still around. I think you must have had a few of these. I showed the shirt to Joe and he said, "Batman." Smart kid, huh. While we were getting ready to read books before bed he looked at a photo of you that I have on my night table. I said "This is Henry. Can you say 'Henry.'" Joe said "Hen - y" He just can't put the "r" in your name, yet. I told him that Henry is Joe's brother. Just like Jack. Nothing like totally confusing the little guy. I said Henry is your brother; he just isn't here any more. Joe said "Oh, Henry went home." That's a good place for you. Joe is now old enough for books with stories. He used to only like books with pictures, animal pictures of course. Now he sits through Horton Hatches the Egg, Green Eggs and Ham, Go Dogs Go, Guess How Much I Love You and a other good books like these. I love reading to him at night. Jack is a really good reader himself now. I have him read a short book and then I read to him from one of his series books, like Magic Treehouse or Maximum Boy. You never read any Maximum Boy books, but you would have like them. Jack loves playing piano. He had a recital a few weeks ago with Michael and some other students.  Jack is playing the Looney Tunes theme song now. He is really good. When I was a kid I wouldn't practice or go near the piano unless Grandma or Papa Teddy told me I had to. Jack is the opposite. He is always playing. Mom and I have to remind him not to play too early in the morning because that wakes up the neighbors. I'll write more about Jack and Joe in just a little bit. I'm glad you're home. posted by Allen | Tuesday, June 15, 2004 Friday, June 11, 2004 I went to watch a funeral procession today. This was a few blocks from our house. It was President Reagan. He was President way before you were born.   When I was a little kid, the same age as you, Grandpa Teddy took me to the funeral of Dwight Eisenhower. His funeral was at the National Cathedral, like President Reagan's. Do you remember when we went to the White House and met President Clinton. You and Jack had a good time playing with Buddy, the President's dog. He is dead now, too. Do you remember the little girl you met outside the Oval Office. She was playing with her Game Boy. Jack is so into his Game Boy now. He has a cable that connects his Game Boy to Sam Shoyer's and Jacob Stern's Game Boys. This is how crazy Jack is about his Game Boy. We were driving to pick up Mom at the airport in Virginia. Jack was in the back seat and he started hopping around and said he had to pee. I asked if he could make it to the airport and he said "no." So I pulled the car off on the side of the road and opened his door. Instead of jumping out to pee in the grass he just sat there dancing in his seat and playing his Game Boy. I said, "Jack, get out and pee," but he didn't move. He said that he couldn't because he was in the middle of a battle. Finally, I reached back and grabbed the Game Boy and said, "go." It was funny and frustrating at the same time. You were the all-time champ at going to the bathroom on the side of the road. That is until we started carrying the urinal with us everywhere we went. Then I got smart and put the little potty in the car. Guess who is just starting to use that potty. Joe. I think Zhenny is more in a hurry to have him use it than anyone else. I think Mom and I did a good job just letting you guys figure it out at your own speed. Enough talk of poop and pee for today. I love you little man. posted by Allen | Friday, June 11, 2004 Wednesday, June 02, 2004  Deadly disease took boy, toll on family Dale Moss LEXINGTON, Ind. — The hospital bed had already been hauled away. A uniformed man now was at the door, there to reclaim what medical gear remained. Left behind were music posters, video games, a boom box — the boy's bedroom finally would look like a boy's bedroom. It finally could. Matthew Lindenmayer had died. Matthew was 13 when Fanconi's anemia got the best of him after a decade of assault. He had begged to leave the hospital — one of dozens of stays — to wait it out in that bedroom. Darla Lindenmayer held a picture of late son Matthew, who succumbed in April to Fanconi's anemia. "Do you know what that means?" Darla Lindenmayer had asked her oldest son. "He accepted what was happening to him," she said. It happened on April 22. In their last conversation, Darla Lindenmayer apologized to a pain-wracked Matthew for having insisted that he be put through all sorts of Hail Mary treatments. "He told me, `Mommy, that's OK. What you did was what was a mom is supposed to do,'" she said. I had introduced you to Matthew about 18 months earlier, from the family's former home in Jeffersonville. Even then he was cruelly fragile and pretty much bedridden. He also was maturely straight about his situation. Online information The Web site dedicated to Matthew Lindenmayer is www.caringbridge.org/in/ matthewlindenmayer He was resigned never to feel great or to be surprised to feel worse. Matthew had endured any and every complication from the unusual genetic disorder that leads to bone marrow failure. A 1997 transplant had not done the trick. Matthew realized what that could mean. "I could die any time," he told me without a hint of pity in his voice. Matthew's birthday is July 3, and his family plans a party. Friends and family will come over for ice cream and cake, and the Lindenmayers will accept gifts to be relayed to children in hospitals. The date must be celebrated annually in similar manner, Darla Lindenmayer said, to reconcile the celebrant being gone. "There are times I feel his passing has given me a voice," she said. She expresses it on a Web site that had chronicled Matthew's illness and now serves as a loving tribute. People who have collided with Fanconi's wrath swap stories there and lend support. The site receives a bunch of hits, and the effort now involves time Darla Lindenmayer is unaccustomed to having. "For 10 years, everything revolved around Matthew," she said. "I'm so used to being so busy with him." No wonder Darla Lindenmayer is a doula who has been unable to assist a birth in two years. Her husband, Robert Lindenmayer, lost his most recent blue-collar job because he also chose to remain at Matthew's side. The family is on welfare and has lived since last August in a house owned by Lexington Presbyterian Church. "We just feel they were meant to be there," pastor Deanna Jobst said. "The church has really tried to step up and witness to them." One such step is to raise money for Matthew's headstone. For now, his grave is in a nearby family plot marked by a cross made by Matthew's paternal grandfather. "It's a quiet place to go sit," Robert Lindenmayer said. Matthew's 7-year-old brother, Spencer, attends Lexington Elementary School across Mulberry Street from their home. Plus there is Cierra, who is 4 and giggles as instinctively as she breathes. Cierra recently needed oral surgery, and her mother was grateful the preparation did not require medical tests. However unlikely, it is possible that Cierra could have Fanconi's. Spencer does not. "It's something we'll have to do next year," Darla Lindenmayer said of the tests. "I'm scared to death. I'm not ready to know." Before his last few miserable months, Matthew had enjoyed a few fairly decent ones. He attended Scottsburg Middle School; was baptized, along with his mother, by Jobst; won the heart of a girl; climbed the tree in the front yard; and somehow talked his parents into letting him drive a bit (with them at his elbow) on the streets of this small, sleepy Scott County town. Due a million breaks, Matthew at least got some. "He needed to be a normal kid," Darla Lindenmayer said. "I'm glad he got the experience." Not that any of them misread the situation; each had been burned too often about getting hopes up. The family was aware how commonly Fanconi's prevails, and they knew that Matthew already had survived longer than any child who had received bone marrow from a nonrelative (none of his family was a match). "We let him live life," his mother said. Matthew's was a marvelous life. He accomplished much while able to do little. "He was poked and prodded by everybody in the universe," Jobst said. "But there was never a sense of sorrow. He lived the fullest he could every day." Dale Moss' column runs Sundays, Wednesdays and Fridays on the Indiana page. You can reach him at (812) 949-4026 or by e-mail at dmoss@courier-journal.com. You can also read his columns at www.courier-journal.com.
posted by Allen |
Wednesday, June 02, 2004
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