"Daddy can we go to the store? Daddy can I call my friend? Daddy can we go to the park?"
It's late spring, and for a moment, Felix Del Valle forgets his disease, his tormented body, his impending death. Slumped in his wheelchair, he beams, shaking his head at their antics, at the blessing of being home another day.
He knows what the world sees when it looks at him: a 46-year-old man with Lou Gehrig's disease, a man whose legs and arms don't work anymore, a man with no money and no means of support, a man who will not witness the future of the four children he has raised alone. His kids don't understand the shadow of death like adults do, not even his oldest, 11-year-old Kyia, who feeds him and wheels him and shaves him and fakes his signature to cash his welfare checks.
Sometimes Felix wonders: Will she learn to be a child again when I am gone?
But what no one understands, not his children nor his friends, not the stream of well-intentioned social workers and therapists and volunteers, is that it's not dying that is breaking Felix's heart. It is the decision he must make by summer's end, to hand over Kyia and Janet, 10, and Felix Jr., 8, and Crystal, 6, to the kindhearted family that has offered to adopt them.
Felix is grateful beyond words that his children will be raised together after he dies.
But he dreads the day they can no longer live as a family in their spartan apartment on Day Street, when the children move on to their new life in the neighboring town of Hamden and he moves into a nursing home to die.
PHOTO CAPTION: Janet Del Valle hugs her father, Felix, at their home in New Haven, Conn. Felix, who is dying of Lou Gehrig's disease, has arranged for another family to adopt Janet and her three siblings to keep the family together. Janet is being treated for emotional problems because of her father's illness.
In a life that hasn't been marked by much luck, the happy moments shine: The day in January 2000 when Felix won sole custody of his children from their abusive, drug-addicted mother.
The day he got a job at Clark's Dairy.
The day Lori Burgess offered to become a mother to his children when he passes.
It was October 2001, the day after Felix had been told he had an incurable disease that would eat away at his muscles and nerves and kill him within two years.
He stumbled back to work in a daze of disbelief, his mind frozen by one thought: What will happen to my children?
Like everyone in the Long Wharf office complex, Burgess, an administrator with the Visiting Nurse Association knew Felix as the ever-beaming sandwich man, whose cries of, "Hello, gorgeous!" made all the ladies blush.
And so when Lori saw Felix's face contorted in sadness and fear, she sat right down and asked him what was wrong.
Through tears, Felix told her about his death sentence, about his biggest fear - that his children would be sent to foster homes, that the family he had struggled to keep together would be torn apart.
But where would he find someone to take on four children?
In her heart, Lori knew the answer.
That night, she talked to her husband, David, a music teacher, tour-bus driver and minister. They prayed. And then they gathered their children, David Jr., 14, Jelisa, 11, and Zachary, 5.
What if we opened our home to these children? they asked. What if they become part of our family forever?
Jelisa's heart sang. She had always wanted sisters.
David pondered the situation thoughtfully.
"What if it was us?" he said finally. "What if our father was dying and we needed a home?"
The next day, Lori approached Felix at work. At first he could hardly grasp what she was saying. This 32-year-old woman with her radiant face and golden voice was willing to make a lifetime commitment to his children?
"You hardly know them," he stammered.
"I know they need a home," Lori said. "I know they need to stay together."
PHOTO CAPTION: Lori Burgess and her husband David have expanded their family by four and granted a dying father's wish.
"Daddy is so happy," Kyia says, beaming, as she feeds Felix mouthfuls of hamburger in his wheelchair at home. "Because he knows that when he is in heaven we will be with a good family, with our very own Mommy and Daddy."
"A good churchgoing family," little Felix chimes in.
Their father turns away so they won't see his tears. It is early June, eight months after his conversation with Lori, and he is still overwhelmed with gratitude. But the transition is proving harder than he imagined.
At first he and Lori were feted like heroes. Churches and schools and businesses threw fund-raisers, setting up a fund for his children and another for the Burgesses to buy a bigger home. A Yale law professor took on Felix's legal case, working out an agreement for the long-term guardianship of the children.
There was even a weeklong trip to Walt Disney World in December, when Felix could still walk. It was the best time of his life.
"I'd never seen my children so happy," Felix said.
But it's a cruel kind of happiness for a father to witness his children's delight and know it is connected to his death. And it's a constant struggle to remind his children that the reason for all the attention now is in anticipation of the sadness to come.
Felix does the best he can, talking to them while he still has his voice, telling them things he had never told them - about growing up in a home for abandoned children in New York City, about the basketball exploits that won him a college scholarship, about the times he collected cans to make ends meet.
He tells them about his failed first marriage, and his regret that he wasn't a better father to his two oldest children, now grown.
And he talks about the Burgesses.
"You must love them," he says. "You must always love each other. And you must stay together."
Sometimes they don't want to hear about his dying. Sometimes they taunt him. Sometimes they cry. Mostly they just adore him, acting out their unspoken grief in countless telling ways.
Kyia is the little mother-figure who wheedles her father to eat more, scolds him when he gets depressed, and coaxes laughs from him with her crazy dancing and silly smiles. Smart and intuitive, she knows exactly what she wants when she grows up.
"I want to find a cure for the disease that my Dad has," she says. "And I want to cook as well as he did before he got sick."
Felix Jr. is a gentle son, always kissing and hugging his Dad, and sometimes begging him to live for another 1,000 years. Little Crystal just beams at the world with her lopsided grin.
And then there is Janet - lanky, rebellious Janet who bristles with confusion and hurt and fear. At 10, she has no idea where to put all her emotions, or how to control them.
Her pretty face can turn dark in an instant, and all of a sudden she is screaming, "Why don't you just die now?!"
Felix knows she is just a frightened child, terrified about what will happen when he is gone.
"I worry about all of them," Felix says. "But I worry most about Janet."
The Burgess home is a rambling three-story house a few miles from Felix's apartment.
For Kyia and Janet and Felix and Crystal, it is an oasis. Here they can take a break from being the children of a dying man. Here they can just be kids.
They start visiting once a week, bounding up the stairs and swinging through Lori's arms with a shower of kisses before hurling themselves onto David with cries of, "Daddy, Daddy."
Only Kyia seems to understand it is a dress rehearsal for the future. She holds back.
"Daddy's having a bad day," she tells Lori.
Lori strokes Kyia's hair.
"You are a good girl to worry so much," she says softly. "And your father is very lucky to have you. Now run off and be a child, and don't worry about anyone but Kyia for a while."
Lori is all gentleness and compassion and warmth. But there is a no-nonsense side to her, too. There are rules in the Burgess home: chores, homework, good grades. Lori makes it clear that rules also apply to Felix's children.
"She's tougher than I ever was," Felix says with a smile.
But he doesn't join his children on visits to the Burgesses. He says it is because he can't get up the steps. Even Kyia knows that it is just too hard for her father to glimpse how their lives will be when he is gone.
Lori's mother, Peggy, jokes that even as a child her daughter was a magnet for the wounded and the lonely.
If anyone can take on another four children, Peggy says, it is this couple, high school sweethearts who stayed in the town where they grew up, close to a huge network of family and friends, and to the Union Temple church that is their spiritual home.
The Burgesses shrug off the wonder of friends, and the suggestion that perhaps they should give their decision more thought.
"There will be good days and bad days," Lori says. "There will be 'attitude days'... but we will get through them, like any big family."
"It's not a sacrifice," says David. "It's a joy."
The children make it easy.
Their first meeting - a Halloween party a year ago - was such a success that the little ones cried when they parted.
Kyia and Jelisa acted as if they had been sisters all their lives, braiding their hair, painting their nails and excitedly planning how to decorate their bedroom.
David Jr. took on the task of teaching little Felix how to throw a football and other "manly" activities.
Only Janet seemed unsure of her place in this strange new world.
Father's Day was extra special in the Del Valle house this year. The children dressed their very best, Kyia and Janet and Crystal in pastel dresses, little Felix in a suit. They wheeled their father a couple of blocks to St. Martin de Porres Roman Catholic Church.
There they were baptized.
Felix is not particularly religious, but he believes in God. He believes that when he dies, he will be watching over his family from heaven. And he believes that by giving each child godparents, they will have another set of protectors when he is gone.
Felix has made other final preparations too. He asked Kyia to scatter his ashes in the Bronx where he grew up.
And he has asked the Burgesses to shield his children from seeing him in the final stages: He doesn't want their last memories to be of him in pain.
"I feel," Felix says, "like a piece of me is disappearing every day."
It's midsummer and the kids are prancing around, full of high spirits and the joys of being out of school. Felix feels exhausted, disconnected.
His legs are like rocks. His arms jerk with involuntary shudders, and he is having difficulty breathing. For the first time he admits to being frightened.
There are times when Felix wonders if his illness was all part of God's plan - to give his children a better life. Maybe God wants them to have two parents.
There are times when he wonders if it would be better to die quickly, in a car crash, or a plane crash. Then he thinks of the fathers who died on Sept. 11. And he feels lucky he has time to say goodbye.
But planning the final farewell gets harder.
He grows tired of good intentions, tired of volunteers who care for him, hinting it is time for the children to move on.
"Everyone is rushing me," he says, after yet another meeting with the lawyers, working on a transition schedule.
Finally, Felix agrees to a date. Before the new school year begins, the children will move in with the Burgesses and start visiting their father on weekends.
Everyone says this is the best thing.
In mid-July Janet throws a tantrum that, even by her standards, is out of control. Screaming, raging, crying, flinging keys at Kyia and an iron at Crystal.
Heaving with sobs, Felix does something he swore he would never do. He asks Kyia to dial the crisis number the social worker has given him.
"I can't take care of her anymore," he sobs into the speaker phone. "You have to take her."
Janet listens, crouching in the corner like a scared animal. She knows she has gone too far.
She creeps up and hugs Felix. "Daddy, please don't cry," she says.
A few hours later, Janet is in the children's psychiatric unit of St. Raphael's hospital, clinging to her father as a counselor explains that she needs to be away from her family for a while.
In the hospital lobby, Kyia, Felix Jr. and Crystal wait beside an ornamental pond. A nurse gives them pennies and tells them if they throw in the coins and wish really hard, their wishes might come true.
The children close their eyes tightly and throw the pennies.
"I wish that Daddy wouldn't die," Felix says.
"I wish that Daddy would get better and that Janet would come home," Kyia says.
By early September, Felix can barely talk; the disease is now attacking his lungs.
Soon, doctors have told him, he will have to use a feeding tube.
Still, Felix can't bring himself to part with the children.
"Soon," Felix whispers. "I just need a little more time."
But time is running out. Even the children can see him slipping away.
On Sept. 20 the state Department of Children and Family Services steps in. The children are picked up after school and brought home for a final goodbye.
Kyia sobs uncontrollably and begs to stay. Felix can do nothing to comfort her.
He is left alone with a piece of paper that says he is too sick to take care of his children.
"I'm going to go to college, no matter what," Kyia says. "And I know on graduation day Daddy will be sitting there in the front row smiling at me, saying, 'That's my girl, that's my girl.' And even if no one else can see him, I will know that he is there."
Felix Jr. pipes in.
"I'll save a seat for him, right in the front row. And even if someone tells me to move over, I'll say, 'No. That seat is for someone very special. That seat is for my dad."'
Felix is despondent. It's three weeks since the children left, and nothing has gone the way he hoped. Janet has been in and out of the hospital, and the state has decided to send her to a home for troubled children when she is released.
Eventually, she is supposed to join her siblings. But Felix wonders if that will ever happen.
He visits her every day, wheeled a few blocks to the hospital by friends.
On Oct. 10, he visits his other children for the first time.
The Burgess home is more beautiful than he imagined - like a storybook house with its pale blue walls and dark blue trim, tucked behind a white picket fence with wild red roses clambering all around.
Inside, a fire glows in the hearth and a pot bubbles on the stove.
The children tumble into his arms, Crystal waving her sparkling new slippers, Felix Jr. smothering him with hugs, Kyia dancing a silly dance and singing a silly song.
They are happy and excited. And they are home.
Felix is overwhelmed. His eyes fill, but he doesn't cry. Aside from worrying about Janet, he doesn't even feel sad. Sitting in his wheelchair in this warm, noisy house with the couple who will become his children's parents, he feels happy.
And sure.
"They are in the right place," Felix says, as a friend drives him away.
EDITOR'S NOTE - The Del Valle Children's Fund is at Chase Manhattan Bank, c/o Bill Rosadini, 234 Church Street, 6th floor, New Haven, Conn. 06510.
Copyright © 2002 LexisNexis, a division of Reed Elsevier Inc. All rights reserved.