By Stephanie Simon
March 26, 2005
MIAMI GARDENS, Fla. -- Day after day, year after year, two mothers sat vigil beside their children.
They sang snatches of favorite songs. They told bright stories out of fragments of the past: Remember when you put that snake in my flowerpot? Remember playing with our old dog, Sweeper?
In Florida, Kaye O'Bara would stroke her daughter's cheek. "Wake up, honey," she'd say. "Wake up and we'll go to Disney."
In Kansas, Shirley Bradley would clutch her son's limp hand. "Squeeze if you can hear me," she'd tell him.
The daughter did not wake up. The son did not squeeze back. The children would not ever again speak or read or move. Their brains were damaged beyond recovery. And so the mothers made their choices.
Kaye O'Bara chose to bring her daughter home, to sustain a life she still viewed as a blessing. Shirley Bradley chose to close off her son's feeding tube, to end what she saw as his suffering.
Neither mother would presume to pass judgment on the other.
Neither claims to have made the right choice. Just the choice that was best for her child.
With the certainty of a mother's love, Kaye O'Bara knows her daughter is happy.
Edwarda O'Bara lies in a sea-green nightgown, on sea-green sheets, in a room filled with angel figurines. Her gray-green eyes flick about, restless and unfocused. Her tongue lolls slackly in her open mouth.
The TV is tuned to Jerry Springer until O'Bara notices and, clucking, changes the channel. "Edwarda doesn't like Jerry," she explains. "She never did like anything smutty."
When she was 16, a lack of insulin sent Edwarda into a diabetic coma. Her heart stopped for several minutes; her brain, starved for oxygen, began to shut down. She can breathe on her own, and cough, but not much more. Edwarda turns 52 tomorrow. On her birthday, as on every day, her mother will braid her long, gray hair with ribbons and pour a mixture of baby food, eggs, milk and yeast into her feeding tube.
Edwarda coughs hoarsely, chest heaving.
"What's the matter, pumpkin?" O'Bara asks, threading a tube down her throat to suck out the mucous. "What's the matter? You want to turn over?"
O'Bara wrestles with Edwarda's motionless body, hoisting her up to change the pad on her sheet, adjusting her head, shifting her hips to avoid bedsores. "You're going for your ride, aren't you?" she says, in the singsong voice mothers use with babies. "You're going for your ride!"
O'Bara, 77, is panting a bit with the effort of turning her daughter. She has done this every two hours, day and night, for 35 years.
"There you are! Miss America!" O'Bara croons, fluffing the pillow. She nuzzles up to Edwarda's cheek. "Oooh, I love you. I love you."
As her mother kisses her, Edwarda's mouth curls into an awkward, fleeting smile.
Shirley Bradley got those smiles, too.
But she knew, with the certainty of a mother's love, that they meant nothing.
For 12 years she had watched over her son, Randy McCullough, in his nursing-home bed. Unmoving, unseeing, his warm brown eyes had gone dull, his limbs stiff and wracked with spasms.
He seemed to know when his mother was with him. Massaging him, she could soothe him into sleep. Although he, like Edwarda, was in a persistent vegetative state, sometimes he seemed to smile at her.
"That smile. That wasn't a smile," she says now, sitting in her home in Topeka, Kan. "It was a muscle reaction. Involuntary. Randy was gone."
She had known it the moment she saw her 25-year-old son strapped to a hospital gurney after a motorcycle crash that had caused head injuries so extensive that he was not breathing when the paramedics arrived.
"I knew intuitively that Randy's spirit, Randy's essence, was no longer with him," says Bradley, a social worker.
She nurtured the body on the bed, tended the sores and kissed the slack cheeks, but it began to seem a charade: "This body was being kept alive, but there was no person in it."
For the first 25 years after Edwarda came home to stay, O'Bara left the house only twice: Once for her husband's funeral and once for her other daughter's wedding.
The wedding was held in a church. But the reception was in the O'Baras' small bungalow in this Miami suburb -- around Edwarda's bed. The priest pinned a corsage on Edwarda's nightgown. The bride held her big sister's hand and told her all about the ceremony.
Ever since she brought Edwarda home on May 31, 1970 -- five months after the teenager slipped into a diabetic coma while everyone thought she was simply sleeping off the flu -- O'Bara has chosen to treat her as a functioning member of the family.
She varies her diet by alternating mashed carrots and mashed green beans in her feeding tube. She rubs sugar-free Popsicles along her lips, and dabs banana pudding on her tongue. She reads the newspaper to her daughter. She paints her nails and shaves her legs as though she might get up tomorrow and go off to the high school prom.
She will not subject Edwarda to any experimental treatment for brain damage, lest it make her worse. But she makes sure she gets the same medical care as anyone else. Edwarda has had surgery on both kidneys and on a collapsed lung. She had a lump in her breast removed; it turned out to be benign. Her mother checks her blood sugar every four hours, around the clock.
O'Bara used to say with conviction that Edwarda would wake up. Now, she says only that perhaps she might.
But even if her daughter remains in this state until she dies, O'Bara has no doubt that it's a life worth living.
"It's all how you look at life," says O'Bara, a former teacher at a Catholic school. "She's enjoying doing what she's doing."
She says her daughter can understand the love that surrounds her and that Edwarda has been blessed with a special power to heal. A book and video about the O'Bara family have drawn visitors to Edwarda's bedside from around the world; several have said she helped them recover from grave illness.
"Maybe someone would come in and say Edwarda doesn't have a good quality of life," O'Bara says. "Well, can you tell me anyone doing as much good as she's doing? To me, that's quality of life."
After the accident in 1991, Bradley saw no quality in her son's life.
Randy, the youngest of her three children, was always so playful, so full of zeal. He loved to wrestle, to water-ski, to pump up his biceps to impress the girls. In the sunroom of her Topeka home, Bradley holds up a photo of her son. He stands waist-deep in water, muscles bulging out of his yellow life vest, grinning and blowing a kiss. That was Randy, alive.
In the nursing-home bed, "he was living, breathing, pulsating, but it was a life sustained only by technical means," his mother says.
"There was energy, of course. But it wasn't life."
The doctors advised her to wait; they told her it was possible he could recover some function. So Bradley waited. She and Randy's father -- the couple had divorced several years earlier -- visited the nursing home daily. Bradley talked to Randy about silly memories: the chocolate cake with caramel icing she baked for his birthday, the treehouse he built with his father, the endless games of Sorry with his two older sisters.
She hoped he could hear her. She never saw any sign that he did.
Instead, she saw his bedsores fester. She noticed bruises caused when his caretakers dropped him as they struggled to prop him in a wheelchair.
He got sick with bout after bout of pneumonia. The antibiotics gave him diarrhea so constant, the skin on his bottom began to peel. Randy had trouble coughing up phlegm, so nurses would suction it out with a tube that made him gag. "I kept thinking: Why are we doing this? Why are doing this?" his mother said.
After several years of fighting to get good care for him in Topeka, Bradley moved her son to a nursing home near his sisters in North Dakota, where she thought he might get more attention. His sisters visited him often; she flew up to see him several times a year. His care did seem to improve. He stopped getting pneumonia.
But his mother noticed a rigidity in his face, in his body, that convinced her he was in pain.
One day, she says, she saw in her son's eyes a plea for help.
"I hesitate to say this, because people won't understand, but if there was any life in that body at all, it was as if he was saying: 'I've had enough. I've had enough.' I knew then that I couldn't stop until I brought him peace."
Bradley told Randy's doctor what she wanted to do.
The doctor convened an ethics committee; they studied Randy's case for months. Meanwhile, Bradley talked with other family members, gradually earning their assent. She also put herself through therapy. She wanted to make sure, she says, that she was acting only out of the "purest intent" -- doing what was best for Randy, not what was most convenient for her.
In January 2003, the doctor agreed to stop feeding Randy, and Bradley flew to North Dakota, to her son.
"I told him what was going to happen. I told him how much I loved him. How much we appreciated the gift of him. I told him it was time now to bring him peace."
For six days, Bradley sat by her son's bed, watching him die.
Blisters pocked his mouth and tongue. His frail body shook with muscle cramps. It was agonizing, she says now: "gruesome, prolonged." But in the dying, "there was also something sacred, something beautiful."
At the end, she recalls, as he gasped for every breath, she wrapped him in her arms and whispered:
"Let go, Randy. I love you. Just let go."
"My goodness!" O'Bara chirps as Edwarda begins, again, to cough. "Cough it up strong. Can you do it yourself? Yes you can! There, that's a good one!"
O'Bara lifts the tube that feeds her daughter, uncaps it and pours in her homemade formula. She does this every six hours, nourishing Edwarda with 1,800 calories a day.
The formula costs O'Bara $219.80 a month. Other supplies -- pads for the bed, lotion to keep Edwarda's skin smooth, tissues and alcohol swabs and catheter bags -- run more than $400 a month.
Medicaid would pay for Edwarda's care if she were in a nursing home or a hospice -- a bill that could easily top $60,000 a year. But because she stays at home, government programs cover only the costs of her medications and one hour a day of nursing care, O'Bara says.
To keep Edwarda comfortable, her mother has taken out multiple mortgages on her house. She juggles 21 credit cards. She cheerfully admits she's $300,000 in debt, but she refuses to worry.
O'Bara doesn't look back at what she missed in life by devoting all her days and all her nights to Edwarda. She refuses to fret about who will take over Edwarda's care in the years ahead. Her daughter is at home, where she belongs, and that's all that matters.
O'Bara wraps Edwarda's fingers around her own.
"You're a funny little kid, aren't you?" she murmurs. "You're a funny little kid."
A picture of Terri Schiavo fills the TV in Edwarda's room.
The sound is muted, so O'Bara squints to read the news flash: The U.S. Supreme Court has declined to step in. Schiavo's parents are nearly out of appeals in their fight to have their daughter's feeding tube reinstated. O'Bara strokes Edwarda's arm.
She has sympathy for both sides: For Schiavo's husband, who says Terri would have wanted the feeding tube removed, and for her parents, who say Terri would want to live.
There is no one correct course, O'Bara says. It's a private decision -- one a family must make on its own, with love.
Bradley feels the same. Watching politicians and protesters presume to know what's best for Terri angers her. She would not have wanted a stranger to make the choice for Randy.
Bradley talks to her son often now. "None of us know what awaits us when we die, but I sense that he's aware I'm talking to him," she says. "He's healed. He's free."
Sitting by Edwarda's bed, surrounded by angels, O'Bara also talks to her child. "I see her," she says, "exactly the same as she always was."
Simon is a former Times staff writer.
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