FL Mom Cares For Comatose
Daughter For 33 Yrs

By Megan O'Matz
Staff Writer
South Florida Sun-Sentinel

MIAMI GARDENS -- For 33 years, in a bedroom decorated with angels, Kaye O'Bara has tended to her daughter, Edwarda, a diabetic whose heart stopped beating in 1970, damaging her brain and thrusting her into a sleep from which she has never awakened.
Kaye turns Edwarda from side to side a dozen times a day to prevent bedsores. She mixes baby food, milk, eggs, orange juice, Mazola oil, brewer's yeast and a piece of white bread into a blender and then a wire mesh strainer, pouring the concoction into Edwarda's feeding tube every two hours, day and night.
She suctions mucus from Edwarda's throat, whispers endearments in her ear, and braids her long gray hair. "She always liked to be fussed with," Kaye says of her eldest daughter, who was 16 when she begged her mother: "Promise you won't leave me, will you, Mommy?" before losing consciousness in the hospital. Now 50, Edwarda has never said another word.
She coughs, grins, grimaces, blinks, and yawns, but exhibits no signs of cognition.
Kaye refuses to let anyone refer to her child's condition by its medical term: persistent vegetative state. "I say if they can find me a tomato that smiles, they can say she's in a vegetative state."
At a time when the Florida Legislature, Gov. Jeb Bush, the courts, the anti-abortion movement and one Tampa-area family are battling over whether to prolong the life of another badly brain-damaged woman, Terri Schiavo, the O'Baras' story provides a window into the emotionally and physically exhausting, yet remarkably rewarding, world of a family that chose life.
From the perspective of her family, Edwarda's existence has great meaning, even though she has not left her bed in 33 years. Her plight and her mother's devotion have resulted in a book, A Promise is a Promise, and broadcast documentaries in Japan and Korea, inspiring people around the world who say it has shown them how to love. Hundreds call and write and show up on the O'Bara doorstep year after year to laugh, cry, sing and pray together.
"I feel very privileged to have you in my path at this point in my life and believe very strongly that Jesus and Mary are going to help us all," Rolina DeSilva, the Ontario mother of a teenage girl hospitalized with a dangerous intestinal disorder, wrote this month to Kaye.
A retired Catholic schoolteacher, Kaye O'Bara claims that the Blessed Mother has appeared to her since 1991, once telling her that Edwarda is a "victim soul," who voluntarily takes on the suffering of other sick, injured and dying people. She believes her daughter's spirit, at times, travels outside her body to comfort others.
"When she wants to," says Kaye, "she'll wake up."
Terri Schiavo's parents, Bob and Mary Schindler, believe their 39-year-old child may wake one day, too, given the proper therapy and rehabilitation. Doctors say Terri has been in a persistent vegetative state since 1990, but her family takes hope in her occasional smiles, the way she reacts to pain and follows a balloon across a room.
They've been alienated for years from Terri's husband, Michael Schiavo, who argues that such movements are mere reflexes and that she should be allowed to die without further medical intervention. Terri left no living will, and the courts have sided consistently with Michael Schiavo.
The gut-wrenching feud has erupted onto the national stage in recent weeks since, with court permission, Michael Schiavo had Terri's feeding tube disconnected, only to have the Florida Legislature pass a bill ordering it put back in and the governor signing the bill into law.
On Monday, Michael Schiavo, who has declined most interviews, appeared on CNN's Larry King Live, saying he's determined to challenge the law's constitutionality. "I'm not going to walk away from Terri because I love her very much," he said.
An instinctive bond
Kaye O'Bara does not fault Schiavo.
"He might truly in his heart feel she's suffering," she said.
At the same time, she shares an instinctive bond with Mary Schindler. Said Kaye: "You never turn your kids away."
And so Kaye O'Bara, now 76, continues to keep a vigil over Edwarda, with the aid of her only other child, Colleen. Kaye's grandson, Ricky, and friends also help. A nurse comes almost every day to bathe Edwarda.
"Something like Edwarda or Terri either brings a family together or breaks it open," Kaye said. "With us, we've been very fortunate. It brought us closer."
For decades, Kaye did not leave the house, except for Colleen's wedding in 1973 and her husband's funeral in 1976. These days, she occasionally goes out to lunch, the store, and to doctor appointments.
Until someone insisted that they enlarge Edwarda's bedroom, Kaye slept on a folding chair, her head on Edwarda's bed. She now retires each night on a twin bed next to Edwarda's.
The last movie she saw was Franco Zeffirelli's version of Romeo and Juliet, more than 34 years ago, with Colleen and the then-functioning Edwarda, who was named after Kaye's father.
"I think Kaye has grown in a different way taking care of Edwarda," said Dr. Louis Chaykin, who has been Edwarda's physician since 1970. "I think she's become very worldly, almost saintly."
Ever chipper, with pale blue eyes, Kaye opens her home to anyone willing to help or needing help.
She estimates that parents have brought 800 to 1,000 sick children to see Edwarda, hoping for a miracle. Kaye says there have been several. "We've had two little girls with cystic fibrosis cured," she says. "We've had cancer cured. We've had lots of crazy things happen."
Not because Edwarda has powers to heal, Kaye says, but because people had faith in God that they would get well.
Last weekend, a young crippled man from Sendai, Japan, accompanied by his mother, arrived at Edwarda's bedside, saying he felt her calling him, after watching a July television documentary about the O'Baras.
"They're coming here to get comfort," Kaye says of the pilgrims, whom she hugs and encourages with kind words. Many leave petitions to the Blessed Mother by Edwarda's bedside.
Several years ago, a New York man who came to visit decided to create a Web site for the family, Kaye posts brief letters on it, organizing thousands to participate in a simultaneous monthly prayer session and encouraging people to show unconditional love.
The outreach is not without risk.
The family fenced in the house after bullets came flying through the door in the late 1970s and '80s and fanatics vowed to put Edwarda out of her misery. Kaye says she never wants her house to have a "carnival atmosphere," with the curious lined up outside her door.
At the same time, Kaye readily concedes that she needs the charity of others to survive.
Throughout the years, she has paid for Edwarda's care by repeatedly mortgaging her home and running up credit cards. Her only stable income, she says, is $1,111 a month from her husband's pension and Social Security.
Book, CD, video sales
Those who read her story online, or watch it on TV, or hear about it in the news, often send a few cents or hundreds of dollars at a time. Kaye sells the book online, as well as a video of Edwarda's life, a cookbook and a CD with a song written for Edwarda.
"This is not used for anything else except to keep us going so I don't have to borrow each month," Kaye writes on the Web site.
Immediately after Edwarda first got sick, doctors asked whether Kaye and her husband wanted to put their daughter in a nursing home.
No nursing home staff, Kaye says, could have watched continuously over Edwarda, who could not speak out when in distress.
"If we had to bring her home with 10 tubes, she was coming home with 10 tubes," Kaye says.
The feeding tube that keeps Terri Schiavo alive and is at the center of the furor over her future poses no dilemma to Kaye O'Bara.
"Let the tube in. I don't believe food should be taken from anyone," she said. "That's not extraordinary."
Asked if she has ever feared that she is keeping Edwarda from God, Kaye says no.
"If He wants to take her, He will, with the tube in or not."
Dr. Chaykin, meanwhile, has never suggested that the family let Edwarda die.
"This little girl is not draining the state," he said. "She's not draining the legal system. She's not draining the legislative system. She's doing some good in her own way. The family and Kaye is carrying and managing the burden. I don't think there's any reason for me to broach that subject."
Sun-Sentinel researcher Barbara Hijek contributed to this report.



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