Tuesday, May 30, 2006
We went to St. Michaels for Memorial Day. We are very fortunate. I don't take any of this for granted.
Mom and Joe tubing!
We spent a lot of time at the pool and on the water because the weather was perfect. Uncle Andrew and Aunt Tracy and Emma and Sam were there.
This is Isabel and Joe at the Maritime Museum outside the Crab Claw.
Here is a picture of Jack and Cousin Sam.
Uncle Bill and Cristina and Isabel and James and Sophia stayed over too. We also had a visit from Cousin Catherine and Tim and their little girl, Sarah. She is a total cutie. It was nice having all of those people together. We had other visitors come by.
Don't Mom and Jack look happy.
We had dinner at the Crab Claw. All of the kids went and checked out the live crabs before they were dumped into the boiling water.
We also went tubing and bike riding and I went for long kayak rides. Joe doesn't want to learn to swim or ride a bike. He kinda let on that he doesn't think he'll be able to keep up on bike rides and is scared of being left behind. I told him that I'd never leave him behind. Then he told me that he doesn't want to fall. I told him that everyone falls and usually you just get right up and start riding again. I explained how I had a big wipeout - on a pollen covered driveway - when we were in St. Louis but didn't get hurt and just jumped right back on my bike.
Aunt Tracy and Uncle Andrew got a new dog. His name is Vasco. He is a Portuguese Water Dog. Papa Sy named him for the Portuguese explorer, Vasco De Gama. He really doesn't like the water much, though.
Papa Sy has a new boat. It goes really fast. The cousins, and Mom, did a lot of tubing behind it. Your cousin Sam had the biggest smile on his face. He couldn't get enough.
Sam and Jack and I rode to St. Michaels and back to the house a few times over the weekend. Joe rode on the back of my bike on this trailer thing. It is like a one wheel bike connected to my bike.
We have included a new detour on our bike route. We now turn down Mt. Misery road. The Secretary of Defense lives in the house that is known as Mt. Misery. I think I may have explained before that the house and street are known as Mt. Misery because that is where they used to "break" slaves. Jack asked me to explain "breaking" slaves and that was hard for me to do.
I started saying that it was a place where "inhuman" things were done to black slaves. Then I stopped because I realized that all of slavery is inhuman.
I then said how Fredrick Douglass is a famous slave who was sent to the owner of Mt. Misery by his "owner" because Frederick Douglass didn't want to be a slave and wouldn't submit to his master. Basically, Mt. Misery was a terrible place where a terrible person did terrible things to black slaves.
The fascination for Jack and Sam is the Secretary of Defense. He is a guy who works here in Washington and he is in charge of wars. Not a great job. Jack and Sam wanting to ride past there kinda reminds me how Aunt Jen and I and all of our friends used to go over to Denny McClain's house when we were kids. Denny McClain was a pitcher with the Washington Senators, and he lived a couple of blocks away from us in Bethesda. He had been a great pitcher for the Detroit Tigers - he was the last 30 game winner in baseball. Then they lowered the pitcher's mound and no-one ever one that many again.
Denny McClain fell on hard times and started taking drugs and selling drugs. That was after he left Washington. All I remember is him handing us and the neighborhood kids baseballs. That was so cool. He ended up in jail.
Well yesterday after we all rode to town, Joe and I went off and had a really nice ride, just the two of us. I like spending alone time with him and with Jack. I asked Joe to rhyme words.
I said, "Pool," and he said "Albert Puljos."
Then he said, "how about 'Fart,' which he then rhymed with 'Pop Tart.'" He is a funny kid.
We rode up to the "poopy cows" as Joe calls them. The Vice President lives next-door to the poopy cows now. Here is a picture of him in the back of his house in St. Michaels with his dogs. It is an interesting coincidence that he lives next door to us in Washington and in St. Michaels.
This is a picture of the Vice President and the Secretary of Defense at the Secretary's house on the creek in St. Michaels. I paddled past it in the kayak.
Uncle Bill said he saw helicopters overhead when he was sitting at the pool. It must have been either the Vice President or the Secretary of Defense.
This is Joe passed out on the couch in the breezeway from having too much fun.
He is also going through a not-so-fun stage where he either doesn't listen to what we say or won't do what we ask him to do.
Last night on our drive back home Mom asked him to be very careful with the snow globe that he brought with him on the trip. It was a snow globe that Mom bought for you at the beach. Two seconds later he had broken it and was covered in liquid and glass.
This is a photo that Mom took of Joe. It was taken the same day as the next picture.
This is a photo that Uncle Andrew took of Joe. He looks different in this than any other photo I've seen - and totally different from how he looks to me. He looks more grown up.
We were sad for so many reasons. The biggest one is that this snow globe had special meaning. Mom told me how she had bought it for you back in August 2002. After you almost died and were hospitalized at Georgetown, Jack went down to the beach for a few days with Aunt Abby so we could focus on you. Mom didn't remember what we did with Joe.
When we felt you were going to be okay, Mom went down to the beach with Val and picked up Jack to bring him home. It was then that Mom bought the snow globe for you - and a stuffed whale for Jack. There was a penguin in the snow globe.
It is now sitting all drained of its snow with a very cracked glass globe. Of course, we were also sad because Joe could have hurt himself with the broken glass, and because he broke it right after Mom asked him to be extra careful.
It was Memorial Day and we learned of an interesting tradition they have in St. Michaels. They fire cannons. It was LOUD!
We went and visited with Aunt Alice and Uncle Peter at their new house. Wow. I wish you could have seen it. It is spectacular.
What was nice about this trip is that we ran into and saw friends and family all weekend. It felt like we were home.
Thursday, May 25, 2006
Joe came downstairs wearing a new pair of Nikes. They are very cool looking. They are silver and must be super fast. But we just went shoe shopping and I didn't remember us getting them for him. I asked Mommy about them and she told me they were your shoes. I guess he found them in his closet.
We bought them for you just a little before you died. You never got a chance to wear them all that much. They fit Joe great. You got smaller near the end. So even though you were seven when we got them for you -- Joe, who is only four, can wear them now.
I am happy for Joe. He loves those sneakers and won't even consider wearing the new shoes we just bought him. Even though he is in the shoes they look empty. Seeing those sneakers makes me sad.
David Ortiz came to work today. Jack played hooky from school. It was nice to see him again. Last time it was with you and he was in the Twins dugout. I have written to you about him a couple of times. He is a super nice guy.
I had him sign the bat he gave you. He also signed a bat that I've gotten signed by Cal and Derek Jeter. We'll auction that off for the Hope for Henry Foundation.
I hope Jack had a good time. I did.
May 23, 2006 Tuesday
U.S. REPRESENTATIVE NANCY PELOSI (D-CA), HOUSE MINORITY LEADER, DELIVERS REMARKS ON STEM CELL RESEARCH
REPRESENTATIVE PELOSI DELIVERS REMARKS ON STEM CELL RESEARCH,
AS RELEASED BY THE HOUSE MINORITY LEADER'S OFFICE
MAY 23, 2006
SPEAKER: U.S. REPRESENTATIVE NANCY PELOSI (D-CA),
HOUSE MINORITY LEADER
PELOSI: Tomorrow, we will observe the one-year anniversary of the passage of the Stem Cell Research Enhancement Act of 2005. The champion for that act is with us here today, Congresswoman Diana DeGette of Colorado.
The stem cell research that Congresswoman DeGette has championed has the power to cure. Every family in America is one telephone call or one diagnosis away from needing this critical research. We are hoping as we observe this one-year anniversary of the bill's passage in the House that the Senate will take action to send the bill to the President's desk and give hope to the American people. It is what Americans want in overwhelming numbers. It is about good solid science, good ethical guidelines, and about keeping Americans healthy.
We are bound together today around a picture of Henry and his parents, Laurie Stongin and Allen Goldberg, who will tell their story. But Henry's time with his loving parents was cut far too short. Because of a genetic disease called Fanconi anemia, Henry passed away in 2002, at just 7 years old. It is in tribute to Henry and so many others that stem cell research has the power to cure that we hope this bill will be passed.
Copyright 2006 Congressional Quarterly, Inc.
Wednesday, May 24, 2006
Mommy and I went up to Capitol Hill yesterday to talk to a very important congresswoman, Rep. Nancy Pelosi, and people from newspapers and tv stations about the need for the government to support research that can help other families with Fanconi anemia.
We carried a picture of you, which Congresswoman Pelosi held throughout the press conference.
Mom was amazing. She spoke to the reporters and told them that we can't let any more kids like you die. If we spend more money for the right things we can save lives. Mom was very eloquent. You would have been proud of her. I was.
The congresswoman said that it was very nice of us to stay involved after your death. She said that so many families just "check out."
I told her that I like to "keep the wound open," and that what better legacy for you than to help save the lives of other kids. Hey, guess what. Kathy Fiorello told Mom that someone who signed up to be a bone marrow donor at one of your drives just donated marrow for someone's transplant. The way I do math means that there is one more life you have saved.
I also explained to Rep. Pelosi that there is one family that I can think of that seemed to check out. The President's family. I don't know how the President can oppose spending money on research when his sister died of Leukemia. I said to her that "letting your family experience inform your decision making is not a sign of weakness." The President is busy listening to the wrong people and not his heart.
I was at lunch with the President's other sister on Sunday. She is sitting a table behind me.
It wasn't the right time to talk to her about all of this, but I wonder how she feels.
DeGette's stem cell bill stuck
A year after success seemed assured, vote in Senate stalls
By M.E. Sprengelmeyer, Rocky Mountain News
May 24, 2006
WASHINGTON - One year ago today, champagne flowed and glasses were raised in Rep. Diana DeGette's Capitol Hill office to toast a hard-fought win for legislation expanding embryonic stem cell research.
The next morning, DeGette and lead co-sponsor, Rep. Mike Castle, R-Del., tied their legislation in a big, red bow and delivered it to senators who vowed to win swift, final passage.
"Get it done," DeGette told them.
But one year later, nothing has been done. The bill still hasn't moved, as senators struggle to reach an agreement on how to proceed.
Backers' frustration has been building. So on Tuesday, DeGette and her allies marked the anniversary of what has turned into a hollow victory.
"This job needs to get done," DeGette said in an interview. "The research has been put back by five years."
Supporters of embryonic stem cell research say it holds great promise in finding cures for diabetes, multiple sclerosis and other crippling diseases. But they say it has been held back by President Bush's decision to limit federally funded research to the limited number of stem cell lines that were available shortly after he took office in 2001.
The DeGette-Castle bill would greatly expand federal research on leftover embryos from fertility clinics, while also enacting ethical standards meant, in part, to prevent embryos from being created for profit.
That has not satisfied opponents, however, particularly religious conservatives. They equate experimentation on embryos to the destruction of human life and claim promises of medical breakthroughs are nothing but "science fiction."
"I know there's a huge press coming from media sources, from certain ends of the pharmaceutical- experimentation gang, and outrageous claims being made for therapy which remains unproven 20 years after it was begun," said Paul Schenck, director of the National Pro-Life Action Center.
Schenck warned that if Senate Majority Leader Bill Frist, R-Tenn., a physician and likely 2008 presidential candidate, finally does bring DeGette's bill up for a vote, "he'd certainly lose the Catholic, evangelical, conservative religious support he'd hope to have."
Those types of election-year considerations are in the background as supporters of the bill hope for a Senate breakthrough this summer.
On Tuesday, DeGette led a parade of lawmakers who marked their yearlong wait with a series of fiery floor speeches.
DeGette cited Frist's comments last summer publicly backing some type of expanded research and promising to schedule a vote.
"At that point, it appeared the hopes of so many patients and caregivers would finally be realized," DeGette told colleagues.
"Unfortunately, Mr. Speaker, that's the last we heard of this bill."
In the Senate, DeGette said, "they've proceeded to work on numerous other bills, including the designation of 46 post offices, but they have refused to put patients first."
DeGette and House Majority Leader Nancy Pelosi, D-Calif., met with Allen Goldberg and Laurie Strongin, who have used the death of their 7-year-old son, Henry, as a rallying cry for expanded research.
Henry was born in 1995 with a rare genetic disease, Fanconi anemia, which caused his bone marrow to fail to produce blood cells.
The couple had a second child whom they hoped could donate stem cells to reverse Henry's condition. But the child turned out not to be a suitable match and Henry died in 2002. The couple sees expanded embryonic stem cell research as critical for families like theirs.
"We feel with every further delay, more and more children are dying from diseases that could be helped with this research," Strongin said in an interview.
Her husband turned to DeGette at one point and said, "Please make it happen."
Even if the Senate approves DeGette's legislation, President Bush has threatened to use his first-ever veto to block it. But backers hope he will heed public opinion polls and back off the threat, particularly in an election year.
"The fact that a year has passed and the Senate has not taken action is crystallizing the issue and making it an election issue," DeGette said.
It already has surfaced in congressional races around the country, and the Democratic Congressional Campaign Committee is expected to target Republican congressional candidates who would block expanded research.
Schenck predicts the bill will eventually be considered, but he projects a different kind of political fallout if it passes.
"What we'll have is a battle in the election season," he said. "Do those who believe in trading some innocent human beings for the comfort and health of others win out? Or will those who (oppose) the destruction of life win out? That remains to be seen."
Pelosi Urges Senate to Act on House Passed Stem Cell Research Enhancement Act
5/23/2006 7:07:00 PM
To: National Desk
Contact: Brendan Daly or Jennifer Crider, 202-226-7616, both of the Office of House Democratic Leader Nancy Pelosi
WASHINGTON, May 23 /U.S. Newswire/ -- House Democratic Leader Nancy Pelosi and Congresswoman Diana DeGette of Colorado joined Allen Goldberg and Laurie Strongin, founders of Hope for Henry, an organization that works to improve the life of children with threatening illnesses, to urge the Senate to pass the Stem Cell Research Enhancement Act. Below are Pelosi's remarks:
"Tomorrow, we will observe the one-year anniversary of the passage of the Stem Cell Research Enhancement Act of 2005. The champion for that act is with us here today, Congresswoman Diana DeGette of Colorado.
"The stem cell research that Congresswoman DeGette has championed has the power to cure. Every family in America is one telephone call or one diagnosis away from needing this critical research. We are hoping as we observe this one-year anniversary of the bill's passage in the House that the Senate will take action to send the bill to the President's desk and give hope to the American people. It is what Americans want in overwhelming numbers. It is about good solid science, good ethical guidelines, and about keeping Americans healthy.
"We are bound together today around a picture of Henry and his parents, Laurie Stongin and Allen Goldberg, who will tell their story. But Henry's time with his loving parents was cut far too short. Because of a genetic disease called Fanconi anemia, Henry passed away in 2002, at just 7 years old. It is in tribute to Henry and so many others that stem cell research has the power to cure that we hope this bill will be passed."
Sunday, May 14, 2006
Wednesday, May 10, 2006
Today was Truck Day at the Gan. I think they should really call it "Horns on Trucks Day".
Joe has a really good friend named Sammy. Sammy's family is from Mexico. I like Sammy a lot because he remembers my name. He remembers my name because it is the same as his brother.
Another kid in Joe's class is Colin. This is Colin and Joe in a mail truck.
Scude is Colin's nanny. Isn't that a crazy coincidence. It is good to see Scude. Colin likes me a lot. He always holds my hand. He is very sweet.
Joe looks like he stuck his finger in a light socket but he is just jumping for joy.
Sammy is having a good time too.
Joe is giving us his best blue lollipop smile.
Here is a shot of you and Mom at Truck Day a few years back. I think you and Joe look a lot alike. At least you have the same smile.
I took the subway from the Gan to work. I ran into David Lane's dad who was also going to work. I think a lot more people are going to take buses and the subway because gasoline costs a lot these days.
Whenever I hear about high gas prices I think back to when we drove from Washington, DC to Minnesota for your transplant. We stopped in Chicago to get something to eat and fill up. The price for a gallon of gas was $2, which seemed so incredibly high.
It is $3 now. I guess it is a good thing we don't have to drive to Minnesota anymore.