::
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."
Shirley Bradley got those smiles, too.
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."
