Sunday, February 27, 2005
I was logging on to this tonight and came across someone else's blog, Ward Jenkin's Ward-O-Matic. He is an illustrator. This is his drawing.
It is called "Sorrow." I like it. It works well here.
Jack and Joe and I went to the comic book store today. Jack reads this same book every single night.
He rereads the same stuff over and over again but never gets tired of it. He knows everything about every superhero and villian.
Dr. Auerbach was here last weekend. Joe, Jack, Mom and I took her out to dinner. It was great to see her. The next day Mom kept asking me if I was okay. I didn't know what she was talking about because I felt okay. She said I looked sad.
Later on when I was thinking about what might have made me look sad I thought back to Dr. Auerbach's visit. She told us that they were having a lot of success with Fanconi transplants -- the toughest cases, like yours -- now in New York at Memorial Sloan Kettering. Deep down I know I was thinking about "if only everything could have happened just one or two years later, maybe you would be alive."
You can't think that way too much, but you also can't shut those thoughts out.
I love you.
Your brother Joe is cute - but he is also a budding thief. Today Jack, Joe and I were walking in Georgetown and Joe grabbed a Reese's Peanut Butter Cup from the shoe shine stand in Georgetown Park Mall. As we were walking along, I saw these two guys point at Joe and laugh but I couldn't figure out what was so funny. Then I saw this orange wrapper peeking out from his hands clamped over his chest.
It took me a second to realize what happened and then I made him walk back and return it to the display. I knelt down next to him and told him that you cannot take things that don't belong to you. That you need to ask Mommy and Daddy if you want something, and then if it is okay, we pay money for it. I then told him that you can go to jail, and not the "Daddy Jail" when we wrestle, but real jail. I hope it sunk in. I think Jack was probably loving it.
The problem is that this is the second time in about a month that he has done this. When we went skiing, Joe walked out of the sweet shop in the lodge with a Tootsie Roll. I made him take it back, and told him then that it is wrong to just take things that don't belong to you.
I went on to explain to him how Tootsie Rolls were a favorite of yours. I told him how we used to watch that Redskins video I have showing Darrell Green pulling a Tootsie Roll out of his sock and saying how they makes you run faster.
The really super weird thing was later that evening everyone was watching TV and they played that same video because Darrell Green was running in the NFL's Fastest Man competition at the Pro Bowl in Hawaii. He is 45 and did really well, though he didn't win. I couldn't believe that coincidence.
You know how I am so into coincidences. Yesterday, I was looking at the first page of this book on Amazon that I had ordered a while ago but haven't gotten yet. I got an email from Amazon telling me the book -- which is a lot like this blog because it was written by a dad who lost his son -- was out of print. So I was checking it out online and I read the first line of the first page which says,
"In moments when I try to recall what my life was like when I was happy, I think of the Paratrooper ride on the boardwalk at Rehoboth, Delaware."
That sounds pretty familiar, doesn't it.
Mom wrote this:
"I had ridden the Paratrooper with friends in grade school; boyfriends in college and Allen as a newlywed. But nothing prepared me for a ride with Henry. It all started with that look, that Henry look where his eyes sparkled extra bright and his double dimples were tempting me to stick my fingers in or just gobble him up. And then he said, “You know mom, if you want to go, I’ll go with you.” Of course I wanted to go. After Henry first made me a mom and I had had time to think about all the stuff I wanted to do with him, one of the first things that occurred to me was I couldn’t wait to take him to Funland, just like my parents had when I was a kid. I couldn’t wait to watch him ring the bell on the fire engine or to ride on the carousel, but most of all, I couldn’t wait to ride the Paratrooper with my boy."
The book I ordered, Only Spring, was written by Dr. Gordon Livingston who lives in Maryland. He wrote the book that I read last month on vacation called Too Soon Old, Too Late Smart. It was really good and made me want to read more from him. When I looked him up on the Internet and saw that he wrote a book based on his journal that he kept when his son was dying after a bone marrow transplant, I knew that I needed to read it.
He has lost two sons, which is so incredibly sad. His one son's transplant was back in 1992, I think. From what I have read, Dr. Livingston is very wise and compassionate, and I am interested in reading more that he has written. I know it will rip my heart out to read Only Spring, but I think it is a healthy thing to do.
This week I went to a lunch and listened to a woman speak who has lost 4 children. Her name is Jeni and she is the mom of Mattie Stepanek. I wrote to you about him when he died a few months ago. The lunch was sponsored by a group called Heartsongs and it honored Mattie and his mom to raise money for Children's Hospital here in DC. The organizers let us sell Hope for Henry "Live Well Laugh Hard" wristbands and we made a lot of money, too.
Mattie's mom was amazing. She didn't cry talking about him -- she made everyone else cry. I couldn't do what she did. She was so impressive. It was nice to learn all about Mattie. He sounded so much like you. He was an expert on everything Harry Potter and like you made all of his nurses fall in love with him. But what you two really shared was your special outlook on life. Mattie's motto was "Remember to play after every storm," and Mom wrote about you, "He had ice cream for dinner and transitioned from the hospital to running a lemonade stand in a matter of minutes."
I wish I can describe you to people the way that Jeni described Mattie. You really got to know just how special he was.
After the lunch I went over to Children's Hospital with a friend from work for a meeting with people there. One interesting this is that Dr. Jonas, the doctor who fixed your heart in Boston, is now working here in Washington at Children's. Wouldn't that have been easier.
When I got over there, it struck me as not the nicest hospital I have ever been to - and you know I have been to a bunch. We actually ended up there with you twice for different things. Walking around the floors this time I couldn't help but notice that it was really crowded and just felt sad.
The good news it they are building a new building and it will be a lot nicer than what is there now. We are going to help put in great TVs and XM radios and stuff for the kids and families. Don't you think that children's hospitals need to be the nicest, most fun places on earth.
Wednesday, February 23, 2005
Mom and I took Joe to his favorite place this weekend -- the zoo. There are brand new cheetah cubs but the line was 45 minutes so we decided to skip them.
Joe's favorite words are "more" and "again."
Although he is really cute, he really annoys Jack ... a lot. Like any little brother, he wants Jack's attention all of the time and for Jack to play with him. There are rare moments when Jack and Joe do play with each other, and Mom and I both are quick to say to each other, "Look, they are playing together, nicely." It is kinda a miracle when it happens and makes us feel really good.
But most of the time Jack is screaming at Joe because Joe is bugging him. Jack didn't bug you for attention as much as bother you by standing cluelessly in front of the TV -- not even moving when you'd say, "Hey, you make a better door than a window."
Today Jack did two things that I made me be so much more in love with him (it is hard to love him any more than I already do). After I dropped off his bathing suit at the JCC this afternoon -- he has swimming and science there after school on Wednesday -- I watched him at the pool through a window. He didn't know I was still there. I watched him swim a lap freestyle and he was really good. What I loved so much was that he would get a little tired and he'd stop and get his breath and then he'd just keep on swimming. Without anyone saying anything to him he just pushed himself along. He had really good form which I didn't know about. I like learning things about Jack. I am glad that I don't know everything about him.
I don't know what it was exactly that I saw in the few minutes that I stood there, but I just think he showed a lot of strength and character.
The second thing he did today that made me love him so much was something very simple. We were reading in his bed as he was getting ready to go to sleep and he asked me if I wanted to have some more of his blanket over me to keep me warm. His thinking about me and my comfort told me that he really has a kind soul.
Your brothers are doing okay. They don't have the relationship that you and Jack had -- being buddies since you were so close in age -- but I think they will have a good bond as they grow up.
I love you.
Friday, February 18, 2005
Wednesday, February 16, 2005
I bought Joe a book that I remember liking when I was a kid. It is called "Suppertime" with Snoopy and the Peanuts gang.
I really, really liked it when I was a kid, but honestly I was a little disappointed when it came to reading it to Joe. It wasn't as great as I remember it. Some things are like that. The book is just a bunch of little sayings. I seem to recall there being a Peanuts saying, but it isn't in that book, that "Happiness is a Warm Blanket" or something like that. I think that Love is wanting to share stuff with someone.
Last month I went to this city called Las Vegas. I stayed in a hotel that has lions in the lobby. The lions hang out in a habitat that has glass walls and even a glass floor. You can walk underneath the lions. It was totally cool. I really wanted Joe to be able to see the lions that close. He would have really enjoyed it.
I was lucky enough to spend a little time with Cal Ripken when I was in Las Vegas. I showed him the photos of the two of you and the newspaper article that was written about your visit. I had a lot of trouble not crying when I was telling him about it. I told him how great it was for you to have been able to sit and talk about Pokemon with him. He is a really nice guy. He is doing something with where I work so maybe I'll get to see him again.
Mommy and I went to Uncle Poopy's 40th birthday party. It was kinda like the Cal Ripken thing again. I knew that if I opened my mouth to tell Bill how much he means to me that tears would fall right down my cheeks. So instead I listened to everyone else tell him how special he is and how great it is to know him so long. I sent him powerful brain waves to let him know how I feel. I guess that is kinda funny considering at his wedding I said in my toast that every single day you need to tell the people you love that you love them. It isn't enough to show them you love them you need to tell them, too. I don't know why that is, it just is. Jack said to Mom the other day something like "okay I get it already -- you can stop telling me you love me so much."
Mom's 40th birthday is coming up in another few weeks. I got her the best present. I cannot wait to show you pictures. I hope she like it. I also got her the best Valentine's Day present.
It is just like this one except it is green, like her car. I think she was really surprised. Her life has been so hard - but happy - that I really feel like I need to get her the most extra-special things in the world that make her smile a lot. Remember how you always needed to get a gumball from the one like this at Blockbuster. The one I got Mom takes quarters. I am hoping that will keep Jack and Joe from going gumball crazy.
Mommy had an idea about one of the rooms that is going to be added to the back of our house.
She wants to put an old fashioned candy store in the room and call it Sugar. She is going to make it a really fun place to be. I told her it is a great idea but she needs to take Jack and Joe to the dentist for the rest of their lives. I am not going to do it. I bet when the candy store is finished Mommy will be happy and a little sad. I am sure she would have wanted to share it with you.
Usually at these big birthdays, like someone's 40th, people make speeches or they do movies. I don't think I will be able to say anything at all. It'll be too hard because I'll think of you and I won't be able to talk. I have to look into something I can do that will be nice but doesn't require me to cry.
On Sunday we went to JPDS. They are filming a movie for the school and they wanted Mom and me to talk about you and the school. I just sat there next to Mom and let her talk. She was great. She started to cry a little but I told her she was doing great and should just keep going.
Then on the following day we went to a parent teacher conference at the Gan with Cheryl. She told us that Joe is doing great. She said that he has a very good sense of humor. That is a really good and almost a grown up thing. It made both Mom and me think of you. The two of you are so alike. I asked Mom the other day if she thought Joe would have turned out so much like you if you had lived. I wonder if there would have been room enough under one roof for two cute, funny guys who knew they were cute and funny. Jack is very funny but in a different way. Joe, like you, makes faces and does funny things, while Jack tells jokes.
At one point Cheryl asked us about Joe and you. He talks about you in class and Cheryl just wanted to know what we tell him. Mom explained that we tell Joe that you were his brother but you died. Cheryl said that he is getting near the age when kids are very curious about death. I guess he has a big head start on the other kids in his class.
Mom says what breaks her heart the most is when Joe (often) tells her how he wants you to come to our house to play. The other day Joe asked me if you were still dying. I like that he is aware of you. I am glad that I am doing this so he can read it when he gets older and know you. I wish I had done this while you were alive, though. I was telling someone this weekend that I think it is really interesting that nowadays we can capture so many photos and videos of the people we love and have them to look at after they die. Before, people had only the pictures in their minds, unless they were movie stars. Now if anyone dies we can watch a movie of them everyday if we want.
Mom and I have been working on the Hope for Henry Foundation. Aside from all the great stuff it does, it is just so nice to be able to say your name every day and look at pictures of you. There is a picture of you on all the brochures and other stuff. We even made a website that talks about the Foundation and you, and has a whole bunch of pictures. I know the kids are enjoying the gifts. We ask them afterwards and they tell us great things.
We bought another portable DVD player for us. Funny thing is that I don't have much interest in it. My life used to revolve around the one we bought for you, buying DVDs and keeping it in good running order.
When Mom had her idea about the candy store, I had this idea about putting together a small book about fathers whose kids have died. What made me think of it was reading this book by a doctor who doesn't live too far from here. His name is Gordon Livingstone and two of his sons died. One was older and one was just about your age and died like you, after a bone marrow transplant. The book was very good and I even ordered another one of his books that is just about his sons' death.
I think my book would just feature a page or two for each dad to tell the story of how he was able to live his life after his kid died. Right when someone dies you don't know how or if you want to go on living. But most people do. I think it might be helpful for some people to read about that. It might not be helpful right when your child dies but maybe a few months out. It could be regular dads like me, and some famous ones. That would help sell the book.
I think it is interesting that there are a lot of famous rock and roll stars who have had kids die. Eric Clapton -- he's kinda old now and having another kid --, who I have mentioned to you before, and this guy Robert Plant, who was in a great band, Led Zepplin. You know the Beatles -- Led Zepplin was after them and really good too. One thing I will tell you about at some point is how David and Jeffrey and I got into a little bit of trouble with the Jewish Rock and Roll Hall of Fame. It has come a long way since the meetings that you sat in. Jeffrey and David are so smart and funny that I am sad that we don't get to have those meetings anymore.
Speaking of music, that is another way Joe is a lot like you. Most mornings we drop off Nina, David and Jack at JPDS, and then Joe and I head over to the Gan. It is nice to have this alone time with him. He loves listening to XMKiDs on the radio, and always wants to call up and ask to hear "Piderman" which is this great version of the Spiderman theme by a guy named Michael Buble. You and Jack always listened to the Ramones version. I never had the one from the cartoon. Joe also asks for "Dogs Out," which is "Who Let the Dogs Out." I remember when I bought that for you and Jack in Minnesota. We turned it up loud and had a dance party. Joe also loves Blues Clues. We listen to the CD that I bought for you and Jack. "Things I Love to Do" is my favorite song off there. I have turned Joe onto it too, and he can now sing along.
Another way he reminds me of you is that when we walk into the Gan in the morning he says hello to both of the guards. He is very sociable. He says hello to everyone. We are always there very early so we go down to the Gan space and play catch with the football. Do you remember Natalie, who was in your class. Her brothers, Robbie and Matthew, are there early too and they play catch with us. I love Mom, Jack and my job, but maybe the most fun part of my day is playing with Joe before school. When it is time we walk into the classroom and Joe walks in very close right behind me trying to stay hidden from Cheryl, Jane and Ian, who is the helper like Big D - Dennis was in your class. When he is ready or when he sees someone else playing, Joe comes out from behind me and gets busy with blocks, or trains or animals or whatever the arts and crafts thing for the day is. After a little bit I tell him that I have to go and I get sent off with a huge hug and a smack on the lips. I always feel good after that.