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After her life, they fight for others

The parents of Terri Schiavo have spent the year speaking, writing a book and building an organization in her name.

Published March 25, 2006

[Times photo: Lara Cerri]
Nearly a year after their daughter's death, Bob and Mary Schindler have focused on fighting what they see as a "euthanasia movement."


ST. PETERSBURG - Three months after Terri Schiavo died, her parents Bob and Mary Schindler brought their family together to ask: What are we going to do now?

"Unanimously, the first thing that came out of all of our mouths, was "We can never let this happen again, what happened to Terri, the way she was starved to death,' " Bob Schindler said Friday.

So now, nearly a year after Terri's death, the Schindler family has focused on that cause, fighting what they see as a "euthanasia movement" of people willing to let disabled people die.

Bob and Mary Schindler described their efforts in a wide-ranging interview Friday afternoon, in which they also said they believed to the end that their daughter was alert and aware of their presence, in spite of doctors who diagnosed her as being in a "persistent vegetative state."

And although the Schindlers have strong feelings regarding the end of life, Bob Schindler said he believes removing live support can sometimes be compassionate. He did so years ago with his own mother.

Friday's interview was one of the family's first in the year since Terri died, but surely not the last. The couple is set to fly to New York on Sunday for a week's worth of television and radio programs, in which they will discuss end-of-life issues as well as their new book.

It's all part of a strategy to focus attention on their cause.

The Schindlers' adult children, Bobby and Suzanne Schindler Vitadamo, have both quit jobs - he as a teacher and she as a stockbroker - and are working regularly in the office of an organization the family established, the Terri Schindler Schiavo Foundation.

Discussing their work Friday in the foundation's a cluttered two-room office on Central Avenue, the Schindlers pointed to a U.S. map on the wall with nearly 50 stars affixed to different cities. Each one signifies a speaking engagement a family member has made on end-of-life issues, and the map isn't up to date. Bobby is at an event in Ireland, they said.

The foundation will receive profits from sales of the book, called A Life That Matters: The Legacy of Terri Schiavo - A Lesson for Us All, the Schindlers said. The book hits stores Tuesday, one day after the release of husband Michael Schiavo's new book, called Terri: The Truth.

Through the St. Petersburg foundation, the Schindler family hopes to set up a nationwide network of doctors, lawyers and other experts who could advise people who find themselves in disputes about whether family members should be taken off life support.

They also have established a separate organization that would lobby for laws on behalf of disabled people like Terri. And one day, Bobby dreams of setting up a treatment center where people like Terri would receive care and therapy.

The Schindlers say they could have used some support from an organization like the foundation back when their daughter was not a household name and the phrase "persistent vegetative state" was rarely used outside of medical textbooks.

Several doctors stated, and courts ultimately agreed, that Terri was in a persistent vegetative state, a diagnosis that means she would not have been aware of her surroundings, even though she may have moved and made sounds and opened her eyes.

That never made sense to the Schindlers, who said their daughter, through brain-damaged, was aware.

"Don't let anybody tell you that Terri did not know who was in that room," Mary Schindler said.

She said it's true that Terri would not respond to some people, particularly men with deeper voices, but she delighted in others.

"I'll tell you, Terri was the happiest little girl when Alex used to read to her," Mary Schindler said, referring to Terri's niece, who is now 12.

When Monsignor Thaddeus Malanowski would enter her room and say, "Now, Terri, I'm going to pray," Terri would look right at him, Bob Schindler said.

When the dispute over Terri became international news, many commentators said it showed the need for people to set up living wills.

"We don't have living wills, we have surrogates," Mary Schindler said.

The Schindlers said all family members have designated people who can clearly explain what they would want doctors to do if they became incapacitated.

Bob Schindler recalls the end of his mother's life when removing life support was merciful.

"I did it on my mother," Bob Schindler said. In 1985 she was on a ventilator, suffering from pneumonia and renal failure, and doctors said she was definitely going to die soon. Schindler says he told the doctor, "Get her off the ventilator so she'll be comfortable."

But that's vastly different from their daughter's case, the Schindlers said. Everyone agrees that, though Terri suffered brain damage, her death was not imminent. And the Schindlers fervently believe that with proper rehabilitation, some rehabilitation would have been possible.

The autopsy of Terri concluded otherwise, saying that her brain weighed less than half of a normal brain, and that the damage was irreversible. The Schindlers disagree, saying some of the shrinkage of the brain could have been from her being dehydrated after her feeding tube was removed.

In June, the Schindlers learned where their daughter was buried from an article in the St. Petersburg Times. Now Mary Schindler said she visits Sylvan Abbey Memorial Park in Clearwater every couple of weeks or so, although her husband and son have not yet gone.

"I'm near her, I talk to her and it just makes me feel good. There's a void in my life right now and there's going to be a void for a long time."

She brings flowers to the grave, and on Christmas laid down poinsettias.

The Schindlers are adamant that removing Terri's feeding tube was not a humane action. Bob Schindler called it "horrific." They said she had deep-set eyes and a hollow look to her face in her final days from dehydration. Bob Schindler, in fact, thought about getting an artist to try to sketch out how she looked, to give others an idea of what they believe she endured, but Mary opposed the idea.

Bob Schindler said he now sees Terri as "a messenger," someone used by God "to alert the world to what's happening with euthanasia."

[Last modified March 30, 2006, 18:53:23]

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