A mother's promise
On Monday, the U.S. Supreme Court could help decide the fate of Terri Schiavo, who has spent 15 years in a vegetative state. A South Florida woman knows the toll such a tragedy can take on a family.
By Maya Bell | Miami Bureau
Posted January 23, 2005
MIAMI GARDENS -- Today is a lavender day. Edwarda O'Bara's nightgown, the ribbons in her braided hair, the sheets on her bed, are all matching hues of lilac.
For 35 years, she has lain in the same bed, locked in the same void, but her surroundings are cheerful, a palette of pastels, an oasis of warmth. Other than her prone figure and the pill bottles nearby, there is very little in the room to suggest "hospital."
Her mother won't have it. If nurses show up in white, Kaye O'Bara hands them a colored smock. The retired teacher has banished negativity from her house, just as she has banished the words her daughter's doctor uses to describe Edwarda's condition: vegetative state.
"Show me a tomato that smiles," O'Bara says, shifting the pillows that support her firstborn. "Is that it, angel dumpling? You want to turn?"
Like Bob and Mary Schindler, whose fight to keep their severely brain-damaged daughter, Terri Schiavo, alive may reach a pivotal legal juncture Monday, O'Bara believes Edwarda is aware and communicative, expressing herself the only way she can:
With eye blinks and hand squeezes, murmurs and moans, smiles and yawns -- movements and sounds that neurologists say are common involuntary responses in people whose primitive brain stems work but whose higher brains do not.
But unlike the Schindlers, O'Bara has had the burden -- she says honor -- of tending to her daughter's every need almost every hour of every day since May 31, 1970. That's when, five months after slipping into a diabetic coma, 16-year-old Edwarda came home from the hospital in what doctors term a vegetative state.
For the first 25 years, O'Bara would leave her house twice, to attend her second daughter's wedding and her husband's funeral. Today, at 77, with occasional relief from a nurse, she ventures out more often -- mostly for her own doctors' appointments. But she is still ruled by the clock, pouring a blended brew of baby food, bread, eggs, orange juice, oil and brewer's yeast into Edwarda's feeding tube every two hours, day and night.
"I don't think people realize it's 24/7," said O'Bara, who relies on a walker to make constant trips to the kitchen. "They think you take care of them during the day, and then you go to bed to sleep, which you don't."
The Schindlers and their other two children say they are eager to make and share similar sacrifices. Whether they might have that chance could rest with the U.S. Supreme Court, which is expected to issue a decision Monday on whether to consider an appeal sought by Gov. Jeb Bush.
The governor is asking the high court to overturn a Florida Supreme Court decision striking down "Terri's Law" for encroaching on the role reserved for judges. The statute empowered the governor to order the reinsertion of the feeding tube that has kept Schiavo alive for nearly 15 years shortly after it was removed by court order in October 2003.
Michael Schiavo had won the right to remove his wife's feeding tube after a six-year legal battle with his in-laws. The courts found that Schiavo presented "clear and convincing" evidence that Terri Schiavo, who like Edwarda suffered a period of oxygen deprivation to the brain, never wanted to be kept alive by artificial means. Her parents disagree, citing their daughter's Catholic faith.
Certain of choice
In north Miami-Dade County, about 200 miles southeast of the Pinellas County hospice where Terri Schiavo lives, O'Bara is certain her daughter would choose life no matter how she had to live it.
Edwarda was unusually compassionate, O'Bara said. At the Catholic school where her mother taught, Edwarda befriended mentally disabled children whom other students ridiculed. When the weather turned cold, she took an extra sweater along in case she saw a homeless person. At age 8, she began assuring her aunt not to worry about her cousin, who had cerebral palsy.
"She always said: 'I'll take care of her all my life,' " O'Bara said.
O'Bara made a similar promise to Edwarda on Jan. 3, 1970, after the teenager was rushed to the hospital. Suffering from the flu, she had thrown up her insulin pills, sending her mild diabetic condition into a tailspin.
Her kidneys failed and her heart stopped. Before the beat was restored, she had suffered brain damage and lapsed into a coma, a deep state of unconsciousness and immobility. Eventually her coma would evolve into a vegetative state, characterized by periods of wakefulness but no awareness.
But before she lost consciousness, O'Bara said, a frightened Edwarda spoke her last words: "Mommy, promise you won't leave me, will you, Mommy?"
Thirty-five years later, as Edwarda's 52nd birthday approaches, O'Bara is still keeping her promise, an endeavor that has bankrupted her financially but fortified her faith -- even when "God put more bumps" in her road.
Three times, O'Bara said, strangers bent on putting Edwarda "out of her misery" have fired bullets into her house. Her husband, Joe, a popular elementary-school physical-education teacher who took on odd jobs to pay mounting bills, died under the strain in 1976. He was 50. And just recently, her youngest daughter, Colleen, was diagnosed with multiple sclerosis.
Yet O'Bara, who claims the Virgin Mary regularly visits her and once told her Edwarda is a "victim soul" or martyr who assumes the suffering of others, is unfailingly upbeat. She is comforted in her belief that Edwarda's spirit leaves her body and travels to help others. Over the years, O'Bara has welcomed thousands of pilgrims from around the world who have heard about Edwarda through word of mouth, news accounts, documentaries or the inspirational book A Promise Is a Promise. They come to pray at her bedside and learn the source of O'Bara's strength.
Asked how she endures, O'Bara answers with a hearty chuckle and twinkling blue eyes: "I'm $300,000 in debt. I have four mortgages on my house. That's how, but we don't care. God will provide."
Occasionally, people send small donations to augment an $1,100-a-month income from Social Security, retirement and veterans benefits. One donor began sending O'Bara 27 cents a month in 1972; now she is up to 34 cents.
Doctors recommended Edwarda live in a nursing home, where the government would pay for her care, but O'Bara and her husband never gave that option a thought. They brought their daughter to their modest house and learned to tend to her many needs, checking blood sugar, administering insulin, emptying urine bags, changing diaper pads and bathing, feeding and turning Edwarda around the clock.
To this day, Edwarda has never had a bedsore. And to this day, O'Bara still reads books and newspapers to her daughter and rubs sugarless Popsicles on her lips. She says she's keeping Edwarda current and her taste buds ready for when she wakes up. She doesn't know when, but she is as certain as her faith that Edwarda will sing and dance and play the piano again.
It is a belief that Edwarda's longtime doctor does not share but will not rule out.
"From a medical standpoint, no, she will not wake up again. People in vegetative states this long do not recover," said endocrinologist Louis Chaykin, who has yet to charge O'Bara for 35 years of house calls. "But from a miracle standpoint, who knows?"
Medical studies
Who does know? It is a question attorneys for the Schindlers often ask, insisting their daughter has purposeful interaction with her family and could regain some function with proper rehabilitation. They cite medical studies showing that, through the years, many patients have been misdiagnosed as being in persistent vegetative states, a phrase coined in 1972.
Dr. James Bernat, a neurologist at Dartmouth Medical School and former chair of the American Academy of Neurology's ethics committee, concedes physicians can only make reasonable judgments about a patient's awareness "because we can't get into their minds." But after 15 years, as in Terri's case, or 35 in Edwarda's, he agrees it would take a miracle for either woman to regain awareness.
To hear O'Bara tell it, miracles already have occurred. In 1997, her gray world suddenly turned into a rainbow: Her lifelong colorblindness had disappeared.
Other blessings were bestowed on people who visited Edwarda, her mother said. One Venezuelan woman's brain tumor vanished. And two sisters, daughters of one of O'Bara's former students, no longer show signs of cystic fibrosis. "She didn't cure them," O'Bara said. "Their faith cured them."
O'Bara knows some people think she's crazy, but she shrugs. Everyone, she says, is entitled to their beliefs. That's why she empathizes with all sides in the Schiavo-Schindler feud. She thinks the governor did the right thing. Once a feeding tube is in, it should not be withdrawn, she said. Yet, she understands families who let loved ones die and she knows how hard it is for parents to let go.
Above all, though, she thinks the Schindlers and Michael Schiavo have forgotten Terri in their anger. As sure as she believes Edwarda is comforted by the peaceful vibes in their home, she believes Terri suffers from the bitterness dividing her loved ones.
"They need to forget they are mad and let her see them together," O'Bara said. "Then I think she would let God make his choice."
As for Edwarda, O'Bara says God can't let her go. Not when she is doing "too much good work."
So when tomorrow dawns in the O'Bara home, it will be another colorful day -- perhaps yellow. Or maybe pink or green or purple.
Maya Bell can be reached at mbell@orlandosentinel.com or 305-810-5003.
http://www.orlandosentinel.com/news/local/state/orl-asecdaughter23012305jan23,1,6450233.story?coll=orl-home-promo&ctrack=1&cset=true
Asaociated Press
January 24, 2005
Change 'may still be some way away,' he tells marchers WASHINGTON - President Bush told abortion foes on Monday he shared their support for “a culture of life” and [claimed progress] in passing legislation to protect the vulnerable.“We need most of all to change hearts and that is what we’re doing,” Bush said as anti-abortion activists marked the 32nd anniversary of the Supreme Court decision legalizing abortion with a day of rallies, protests and other activities. The issue took on new urgency with the likelihood of a high court vacancy. Bush addressed marchers by phone from the presidential retreat at Camp David...
As in the words of one 4 year digger, original supporter, ask every Congressperson just what this vulnerable protection legislation IS that this President claims progress?
What is it's name and number?
And how does it save not just the Terri's of the future but Terri Schiavo now because you know OF her, but you do not yet know the REAL TRUTH ABOUT her and what has been happening TO her?
If Congress does not know what the President is talking about let's obtain the President's Administrative Policy Position on the killing of Terri Schiavo and his concerns about the Law of this Case, becoming the mandated [forced] order of the court upon the Legislature to pass the Law of the Terri Case into law.
Judge Greer laid down the law during the discovery period leading to the "She's Unconscious Lie Trial" of October 2002, Greer meanly said, "The Law of the Case is that she [Terri] is GONNA DIE!" I was in the courtroom.
Judge Greer is Biased. Cause for recusal. Personal agenda. Legally blind. Unqualified as Judicial Candidate and should have been disqualified by proof and complaints. Take your pick.
Judicially mandated commission of a s825.102 life felony denial of nutrition prohibition sets a precedent for other caused death by starvation based on oral lies of not wanting to live (suicidal) anymore AIDED by onyone else or entitiy is not homicide or premeditated murder, or neglect, exploitation as it is just allowing that person to die, but we pushed.