It's an old cliche: "Tragedy makes us stronger." But one military mother says it's true.
Since Nellie Bagley's son, Jose Pequeno, was terribly wounded in Iraq, she has had to marshal all the emotional resources she has to cope.
And she has done more than cope — she is using the power of that tragedy to prod the government to treat wounded veterans and their families better.
Now, Bagley talks about her life as though she is two different people. There was Nellie before Jose got blown up. And there's Nellie since he got blown up.
Bagley tells her story while standing next to her son's bed in a house near Tampa, Fla. Jose is propped up against the pillows. His eyes seem to be staring into space. His mouth is open. He's drooling.
"Jose can hear you. Jose can see you. Jose can understand anything you say to him; he's just not able to communicate back to you," Bagley says.
'Who Are You To Tell Me To Let My Son Die?'
On March 1, 2006, Jose's Humvee was hit by a grenade. A few days after he was blown up, the military flew Jose to the Naval Medical Center, in Bethesda, Md. Bagley and her daughter rushed to see him. She says she had been a pushover her whole life — until that moment.
I look at the doctor and I said to him, 'Who are you to tell me to let my son die?' And that was the first time that I stood up to somebody like that. That was the first time that I stood up for what I believe to fight for my son. Because he could not fight for himself.
"I was the most meek person you will ever meet," she says. "I would let everybody run all over me. I was the person that let my ex-husband run my life. And I just obey[ed]."
But then she found herself in the ICU. Her son was plugged into a ventilator. It was 3 a.m. And everything changed.
"The doctor put us in the room, my daughter and I, and said to us, 'You need to let him go; he's not going to make it,' " Bagley says.
Then the doctor told her that her son would be a vegetable if he lived.
"I look at the doctor and I said to him, 'Who are you to tell me to let my son die?' And that was the first time that I stood up to somebody like that," she says. "That was the first time that I stood up for what I believe to fight for my son. Because he could not fight for himself."
Bagley has been fighting for almost four years now. Jose can't talk. He can't walk. He can't eat or even move most of his body. Doctors say he might not perceive or understand the world any more than does a baby. But just by living, Jose has surprised the doctors. And Bagley has surprised just about everybody.
"Nellie and Jose basically have led the way, almost like pioneers, almost like Lewis and Clark going across the country," says Dr. Steven Scott, one of the head physicians at the veterans hospital in Tampa.
He says Bagley has pushed him and she's pushed the government to take care of Jose in ways they hardly ever treated seriously wounded troops before.
"She was able to get things done that probably normally would not [have been done]," he says. "And that's what's so special about Nellie and Jose ... that they give hope to so many others."
A Mother's Insight
Bagley, 58, has been married twice — and divorced twice. When Jose went to war, Bagley was working quality control in a factory.
At the moment, she sits next to Jose's bed. She clips and files his nails. Next to the bed, a striking photo of Jose as a young Marine shows him as somebody you'd want on a recruiting poster.
That first night she saw Jose in the ICU, Bagley started sleeping in the lobby. A few weeks later, she moved into his hospital room. The military kept transferring Jose to different hospitals — from Washington, D.C., to Boston to Tampa. Jose also has a wife and three children. They stayed behind at their home in New Hampshire. But Bagley quit her job and kept moving with Jose. She spent all of the money that she saved — including her retirement money.
Jose's younger sister quit her job, and she moved into his hospital room, too. Sometimes she and her mother slept on blankets on the floor. Or if they could find them, they slept on reclining chairs. They ate ramen noodles.
Pretty soon, Bagley started telling the hospital staff how to take care of her son. For instance, she was sure the drugs they were giving Jose were making him sick.
"And I told the doctors, 'Please, I need you to change to something else,' " she says.
Scott said Bagley's story is true.
"Her mother insight was better than our insight from a clinical-practice aspect. She basically found things or identified things far in advance of what we could."
People say Scott did more than admit he was wrong. He encouraged Bagley to become "the voice" for other families and wounded vets. She'd go from room to room when new patients came in and say, "I'm Mrs. Bagley, and if you need anything, I know the system, I know how to work it, please let me know."
And Bagley wasn't just a force at the Department of Veterans Affairs in Tampa. Some of the country's top generals met her when they toured military hospitals. They gave her special treatment, too.
Gen. Colin Powell was one of the star speakers this May at the National Memorial Day Concert. At the foot of the U.S. Capitol, he honored Bagley's family.
"Nellie, Elizabeth and Jose, we're inspired by your bravery, your love, your determination," he said. "Jose and all of the disabled vets are living memorials of our wars. They deserve no less than the finest care possible."
The Challenge Of Home Care
About six months before that concert, the doctors at the VA told Bagley it was time to send Jose to a nursing home. But she said forget it — she was going to take care of Jose herself. And that began her biggest struggle.
Bagley says she wasn't prepared for the challenge. Nobody gave her classes or pamphlets — she had to figure it out on her own, she says. And then she had to fight to get the equipment Jose needed.
She asked the VA to give them the special air mattress that Jose had at the VA hospital that helps prevent bedsores. But the VA said, "No, the rule says we have to give you another kind of bed." So Bagley called the secretary of veterans affairs and said, "This needs to change."
Jose got the special bed. Then Bagley told the VA that she and her daughter could hardly move Jose out of the bed. They needed one of those special motorized lifts to carry him to his wheelchair and shower. But the VA replied the rules only let them give the lift to patients who have spinal cord injuries. Jose has a brain injury.
My son didn't say much; he was very quiet. He would walk out and he would say, 'Love you,' and wink at me. We went through some rough times and he would wink at me, like saying, 'It's gonna be OK.' You don't know how much I miss that wink.
"I'm 5 foot 2; he's 6 foot 2," Bagley says. "And my argument was, 'If you want me to be able to have him home, I need something like this.' "
The VA finally gave in, and Bagley got the lift. So now there are metal tracks across the ceiling in her home. Push a button, and it lowers a cocoon that they wrap around Jose's body.
And then there was an even bigger problem. During the first few months Jose was home, Bagley took care of him mainly herself. She's up at 4:30 every morning. By 5:30, she's at Jose's bed. She empties his urine bag. She sorts and grinds a dozen pills. She purees cereal and milk in the blender and pours the mush into Jose's gastric tube. She changes his diaper and cleans his whole body with washcloths. Then it's time for mouth care — she brushes his teeth, cleans his tongue and flosses his teeth.
And that's just beginning of their day. So, Bagley turned to the VA — again. She said, "I need someone to help me take care of Jose." She struggled for months to get it. But this summer, the VA finally agreed to pay for nursing aides to come to her home 12 hours a day.
Scott says Bagley and Jose have opened up doors for others. He says he realizes that everybody can't take care of a severely wounded relative at home. Some people can't handle it. But if families want to, Bagley and Jose have shown the VA how to help them do it.
Of course, Tampa's just one VA hospital — there are 152 others nationwide. Veterans advocates say many of those VAs don't support families anywhere near as well.
But now Congress might help them. Most members support legislation that would actually pay family members who take care of seriously wounded vets. The family members would also get training — and therapy — to help prevent them from burning out. And evidence suggests that wouldn't cost taxpayers any more money than putting the vets in a nursing home. If anything, it might save money.
'I Never Let Him See Me Cry'
Back at Bagley's home, it's 8 p.m. The nursing aide has left, and Bagley puts on a CD that she says helps Jose sleep. She'll keep watch over Jose during the night. Right next to her bed, there's a big computer monitor on her dresser. It's hooked up to a camera in Jose's room. His eyes are closed. You can hear the whoosh of his air bed. Bagley says she realizes that Jose might never get any better. But she refuses to think about that.
When asked what she thinks about when she watches him sleep, Bagley says she cries.
"I bury my head on the pillow and cry every night for the last three years. I never [let him] see me cry. Never have, never will. I have to be positive around him."
When she evokes memories of Jose, Bagley says she recalls his wink.
"My son didn't say much; he was very quiet. He would walk out and he would say, 'Love you,' and wink at me. We went through some rough times and he would wink at me, like saying, 'It's gonna be OK,' " she says, on the verge of tears. "You don't know how much I miss that wink."
Not long after the October visit at their home, Bagley flew Jose to the Bethesda Naval Medical Center in Maryland. He's just had the first of a series of surgeries. They're risky surgeries, to try to rebuild his skull. And doctors say maybe that can help him improve.
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