MOTHER'S DAY

For woman in 38-year coma, caregiving stays in the family

As Edwarda O'Bara lies comatose, her sister has become the steward of a promise their late mother made 38 years ago.

tfigueras@MiamiHerald.com

Colleen O'Bara takes a break from caring for her sister, Edwarda, who has been in a coma for 38 years. The younger sister has taken over the job her mother, Kaye O'bara, did until her death, in March, 2008.
MARICE COHN BAND / MIAMI HERALD STAFF
Colleen O'Bara takes a break from caring for her sister, Edwarda, who has been in a coma for 38 years. The younger sister has taken over the job her mother, Kaye O'bara, did until her death, in March, 2008.

The room is the same as it has always been.

There is the cabinet stocked with insulin and syringes, the narrow twin bed that never offered a full night's sleep. The shelves, home to a galaxy of porcelain angels, the walls filled with images of peaceful Madonnas.

And in the middle of the room is Edwarda O'Bara, her braids long ago turned gray, in the same place she has lain since slipping into a coma nearly four decades ago.

But the woman who now cares for Edwarda has changed.

This is the first Mother's Day the comatose Miami Gardens woman, now 55, will be without her mother. Kaye O'Bara, who became well known for her pledge to never leave her then-teenage daughter, died a few weeks ago.

Now it's Colleen O'Bara, the other O'Bara girl, who has taken it upon herself to fulfill her mother's promise.

It's a decision that came as a surprise even to Colleen -- the younger, wilder sister with trouble in her past, who even now considers herself ``the selfish one.''

But she says that all those years of secretly doubting that she was capable -- or willing -- to fill her mother's shoes melted away on that March morning Kaye O'Bara was found dead in the room she shared with Edwarda.

Colleen, at long last, had found her place.

''I always thought when the time came I would have questions. Could I do it? Would I do it?'' said Colleen O'Bara, 53. 'But when my mother died, I never asked, `What's going to happen to Edwarda?' I knew.''

O'Bara was 15 when her older sister went into a diabetic coma in 1970, never to fully regain consciousness.

Edwarda's plight generated reams of news coverage and moved the faithful to believe that Kaye O'Bara was visited by the Virgin Mary and that her sleeping daughter was capable of spiritual healing.

In the meantime, Colleen O'Bara wrestled her own demons: a broken marriage, a son to raise, and a spate of arrests for drugs and other offenses that led to an eight-month stint in state prison 14 years ago.

A few years ago, doctors told her she had multiple sclerosis, a degenerative disease often exacerbated by stress and fatigue.

Except for surgery to correct the double vision that is a telltale symptom of multiple sclerosis, Colleen O'Bara says she is fine.

And her troubles with the law are long in the past, she says, replaced with her new mission of keeping her sister healthy and at home despite a mountain of debt.

`I WAS LISTENING'

''When I was out running around, I thought that was who I was, what I was made of,'' said O'Bara, taking a brief break to smoke a Newport on the back patio, her chair angled to keep tabs on Edwarda through the sliding glass door.

``But I guess my mother instilled something in me, even though I didn't know it. I guess I was listening to her after all.''

Her mother relied on donations and her late husband's Navy pension to make ends meet. Colleen O'Bara said she had no idea how bad the situation was until after Kaye O'Bara died of natural causes two months ago.

The house, thanks to a charity drive sponsored years ago by the Knights of Columbus, has been paid for. But the bills from credit cards used to cover everyday expenses like groceries and medical supplies are in the tens of thousands of dollars.

Midway through her cigarette, the phone rings. Yet another bill collector is calling.

''I tell them all they're going to get is practice,'' O'Bara said. ``There's no money, no estate. But there's no way my sister is leaving this house.''

The week her mother died, Colleen sold her pickup truck, a 2004 Ford F-150, to get cash to cover expenses. But she also had to quit her job as a horse trainer to care for Edwarda.

''I think I need her more than she needs me,'' Colleen says, the blue eyes that are an O'Bara family trademark crinkling into a smile. ``I can't explain it. It's that sisterly thing.''

Years ago, Kaye O'Bara's decision to care for Edwarda at home moved bestselling author Wayne Dyer to write A Promise Is a Promise: An Almost Unbelievable Story of a Mother's Unconditional Love and What It Can Teach Us.

This next chapter in the O'Bara story is equally moving, Dyer said.

''It's probably the greatest opportunity in Colleen's life, in anyone's life, to serve someone else,'' said Dyer, speaking by phone from his home in Hawaii. ``I always knew that this was going to be her great calling. I'm thrilled for Colleen, that she has made that leap forward.''

Edwarda O'Bara was 16 when she suffered complications from diabetes that sent her body into shock. When she was in the hospital, she turned to her mother and asked her to promise to never leave her.

That last conversation would define the next 38 years of Kaye O'Bara's life.

Dr. Louis Chaykin, the specialist who treated Edwarda at North Miami General Hospital, was in his first full year of residency. She was ''more dead than living, but we managed to get her stable,'' Chaykin remembers.

FAMILY LIFE CHANGES

Over the decades, he served as the O'Bara family doctor, watching as Kaye and her husband, Joe, struggled to make ends meet. Kaye quit her teaching job at St. Rose of Lima Catholic school. Her husband, also a teacher, took on extra jobs before suffering a fatal heart attack a few years later.

Chaykin suspects that Colleen O'Bara, too, was deeply affected.

''Suddenly a normal family with two teenagers becomes a hospital with one unconscious daughter getting all the time, effort, love, attention -- possibly inadvertently,'' Chaykin said. ``There wasn't enough time in the day to give to the both of them.''

Colleen says her parents took pains to keep her life as normal as possible. The day her sister slipped into a coma, her father left the hospital to take Colleen to compete in a horse show.

''They tried to keep things the same,'' she said. ``. . . They wanted my life to go on.''

Edwarda receives some Medicaid benefits but not enough to cover the expense of a private nurse -- meaning that her family, like many in similar situations, had to provide her day-to-day care.

There are feedings every two hours, insulin injections every six. Edwarda must be turned, changed, bathed and comforted.

For Colleen, taking charge of her sister's health meant overcoming a steep learning curve in a few short weeks.

''I never really knew what my mother went through,'' said Colleen, carefully pulling aside Edwarda's cornflower-blue nightgown to expose her feeding tube.

With a steady hand, Colleen pours a measuring cup filled with warm baby formula and brewer's yeast into the narrow funnel.

Her eyes stay on her sister's face. Edwarda lets out a soft sigh.

''It's OK,'' Colleen tells her gently, her free hand stroking Edwarda's arm. ``You're fine. I love you.''

As kids, Colleen -- mischievous, fiery-tempered -- was always first to come to her sister's aid.

''Even though she was older, she never defended herself. She was the most forgiving, generous person,'' said Colleen, noting that her sister even seemed immune to the romantic rivalries typical of teenage girls.

''If a boy she was interested in liked one of her friends, she was ready to let it go. I was the one who wanted to knock the girl's block off,'' Colleen said. `` She was the lady. I was the tomboy.''

When she married her high school sweetheart at 19, Colleen made sure the reception was held at home so the entire O'Bara clan could be together -- including Edwarda.

Her son, Richard, born eight days after Joseph O'Bara died, spent much of his childhood playing checkers and other games alongside Edwarda's bed.

Later, as her marriage fell apart and her son had grown older, Colleen said she began to ``feel lonely. There was a void.''

''I started hanging out with the wrong crowd,'' Colleen said.

In 1994, after a rash of arrests, she was sentenced to nine months at Broward Correctional Institution.

Those were her darkest days.

''I realized that if something happened to my mother and sister while I was locked up, there wasn't anything I could do,'' said Colleen, who has not been arrested since her release. ``That was the worst.''

Richard O'Bara was in high school at the time.

''It was tough. I missed her,'' said Richard, 31, who lived off and on with Kaye O'Bara over the years. ``But my grandmother explained to me it was what my mom needed. Everything since then has been wonderful.''

Years ago, Richard decided to legally change his surname from Owen to O'Bara, in honor of the women who raised him.

''They did their best to show me how to be a man,'' said Richard, a computer technician. ``I wanted to make sure the O'Bara name lived on.''

He has moved in with his mother to help with his aunt's care. His 9-year-old son, Joseph -- named after his maternal grandfather -- also lives there part time.

Close friends of the family say Edwarda is in good hands.

''Colleen's the same as her mom in regards to that drive and determination,'' said Manny Koukoulas, who runs a website devoted to Edwarda and would travel from his New York home to visit Kaye.

Like many others, he believed that Kaye, a devout Catholic, saw visions of the Virgin Mary in her home and that, in her sleeping state, Edwarda is capable of intervening for the sick.

Visitors to the house often reported feeling a strange warmth, or detecting the scent of fresh roses in Edwarda's room.

Colleen is matter-of-fact about spiritual matters.

''To me, it was just one mother talking to another,'' she said of her mother's visions of the Virgin Mary.

Even skeptics, like Dr. Chaykin, found themselves -- if not convinced of divine presence -- impressed with Kaye's insistence that her daughter would one day recover.

''Her faith was so strong that I just stopped trying to address the issue,'' said Chaykin, now retired.

RETHINKING A DECISION

Over the years, Chaykin said, he wondered if he had made the right call during those first few days at the hospital.

''I'm not sure we did the right thing,'' Chaykin said. ``If I had known what the future would have foretold, the toll it took on the family, I wonder if it was worth saving this life . . . not that I would ever have said that to Kaye.''

But he leaves some room for the inexplicable.

''I've learned physicians at times need to be less aggressive when it is hopeless from a scientific standpoint,'' he said. ``That doesn't mean that miracles don't occur that science can't explain.''

Like her mother, Colleen O'Bara, too, says she counts on faith to get her through the day.

'Sometimes Edwarda will open her eyes, and I think, `This is it. She's waking up,' '' Colleen said. ``I can't believe we went through all of this without it turning out OK. I can't believe there's not going to be a happy ending.''

 

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