posted on June 11, 2003 06:36:35 PM new
June 11, 2003, 12:20AM
Father of four dies after struggle with Lou Gehrig's disease
Associated Press
NEW HAVEN, Conn. -- A single father who spent the final months of his life searching for a home for his four children has died of Lou Gehrig's disease. He was 46.
Felix Del Valle died Thursday, 18 months after he was diagnosed.
"He didn't have anything that I would have considered the typical breaks in life," said Fred Hartman, a friend of Del Valle's. "He was abandoned, he was orphaned, he was raised in an orphanage, he was poor ... and he came through it with such a positive outlook."
Lori and David Burgess, a couple Del Valle met through his church, adopted three of his children, 11-year-old Kyia, 8-year-old Felix Jr. and 7-year-old Crystal. His daughter Janet, 10, who struggled with emotional problems, is living with another family friend.
The couple volunteered to take the children shortly after Del Valle became ill, after sitting down with their own children and deciding they would open their home.
"I know they need a home," Lori told him at the time. "I know they need to stay together."
Del Valle won custody of his children from their abusive, drug-addicted mother three years ago.
In the months before he died, the community mobilized to organize numerous fund raisers. The family took a trip to Disney World when Del Valle could still walk. A Yale professor drafted a long-term guardianship agreement.
Hartman and Clarks Dairy, where Del Valle worked as a sandwich-maker, raised $4,000 to rent a van so he could take trips with his children.
Del Valle saw his children for the last time a week before his death, during a party for Crystal's 7th birthday.
"It was really a good thing that the kids had that morning to spend with him," said Cynthia Teixeira, who attends St. Martin de Porres Church with the family. "It was a time that I think was really, truly beautiful."
Regulars here at Whiskey Bar know I rarely write about my private life, or my friends or my family -- unless it has some obvious relevance to politics or journalism or history or any of the broader topics I do write about.
I figure if the customers want to come in and tell me their troubles, well, that's what a good bartender is for. But I prefer not to waste my time or anybody else's with a blogger's version of those-slides-I-took-on-my-summer-vacation.
But today my son graduated from Elementary School, and as stood there in the school auditorium watching the ceremony, I saw something that moved me deeply, and left me a little in awe at the power of the human spirit. And so I wanted to share it with you.
What I saw was a demonstration of pure courage, probably the bravest act I have ever personally witnessed (I mean not counting the guy who ate the "Tuna Surprise" at the bring-your-parent-to-school lunch last year.)
The hero, or rather the heroine, of my story is an 11-year old girl -- the sister of my daughter's best friend. We'll call her Lilly. For almost two years, Lilly has been fighting a losing battle against brain cancer. At first, the tumor responded to treatment, and seemed to go into remission. But last fall, it began to grow again. Lilly has been in and out of the hospital ever since.
Earlier this spring, she began an intensive round of chemotherapy -- something her parents had avoided earlier because of the risk that Lilly, in her weakened condition, might not survive it. But now they have no choice. It's the bottom of the ninth, and Lilly is getting down towards her final out.
And yet, through it all -- through the pain and the nausea and the headaches and the hair loss and the growing weakness -- Lilly has tried to keep up with her school work. She's never given up. She's been determined to graduate with the rest of her class.
And today she did. She was up there on the stage in her wheelchair, her bald head covered with a blue cotton hat, pale and thin and weak and tremoring. But alive, and still fighting.
As part of the ceremony, each of the kids in the Class of '03 trooped up to the microphone, said their name, and then offered a one-word description they had picked for themselves: "My name's Dan, and I'm athletic," or "I'm Cathy, and I'm artistic."
When it was Lilly's turn, her teacher held the microphone up to her mouth, and she tried to speak her name -- tried desperately. But she couldn't do it. The motor skills just aren't there any more. So her teacher turned to the audience and said it for her:
"This is Lilly, and she's spunky."
Spunky. Goddamn right. Spunkier than I'll ever be -- and I dare say most of you as well.
Spunkier than most of our official war "heros," who go into battle with the full weight of the world's most awesome military machine behind them.
Spunkier than our president, for all his macho posturing and flight desk photo ops.
And certainly spunkier than our neoconservative Beltway warriors -- always eager to send others to fight and die in wars their own children will watch on television.
It's an amazing thing to find real courage in as unexpected a place as an elementary school auditorium. And once you've seen it, the genuine article, on the face of an 11-year-old girl, you understand how false and purile the popular notion of "courage" really is.
What Hollywood likes to call courage is usually just aggression -- a toxic cocktail of testosterone, adrenaline and herd instinct, combined with that irrational illusion of personal immortality only teenagers can know. It's a drug, the same one that has kept the human tribe at war with itself since Caine. A necessary evil, at best. A murderous crime at worse. Worthy of respect, perhaps, and gratitude -- if the cause is just. But never worthy of admiration.
No one will ever put Lilly's name on a wall. A grateful nation won't remember her on Memorial Day. But when I think of her up on that stage, still fighting the good fight, with her fragile body as her only weapon against a deadly and remorseless enemy, I'm filled with admiration.
Admiration, and pride -- that I should belong to a species capable of producing such a courageous soul.
posted on June 14, 2003 10:13:01 AM new
"Count Your Blessings".....I do, almost each and every day. When times have been tough for us all we had to do was look at what some people were going through in their lives....made our problems seem so very unimportant.
Not sure if my employment in the medical field played a part in that or not. Being around people who were ill always gave me a sense of appreciation of how fortunate we were/are.
posted on June 16, 2003 03:50:08 PM new
Helen, Thanks for interjecting politicts into a thread started to get AWAY from political bickering & backstabbing. You just don't know when to quit.
posted on June 17, 2003 10:47:32 AM new
I don't generally post to your threads, Bear, because the topics are generally silly or they need to be checked out at snoopes or the author is unknown. In this case, I was touched by this story, not because of the political mention but because of the courage of the little girl. I posted it in your thread because I considered it appropriate.
It's silly of you to exaggerate the mention of Bush in a story about the courage of a little girl with cancer.
As I said before, I started this thread to get away from politics.
Your choice of articles, while I suppose was in good faith, demonstrates your liberal ideals & your obvious chance to take a "shot" at U.S. policy. Heven forbid you miss an opportunity.
We all know you are anti Bush & anti war.
The young girl may be spunky, but comparing her to U.S. troops is totally assinine.
posted on June 17, 2003 04:08:56 PM new
She's a real trooper in my opinion and poor ole George pales by comparison.- even when he is strutting about on a ship declaring "victory".
