A SacBee article about the Terri Schiavo case.
It really describes how I instinctively viewed this case.A joy, not a burden
In fact I may have even had something like the title
verbatim in my head when I thought of her parents.
Unfortunately you need a SacBee registration to view it
so I had to copy the whole damn thing here.
Yuba family with a teen on feeding tube says: Let Terri Schiavo live
By Blair Anthony Robertson -- Bee Staff Writer
Published 2:15 am PST Friday, March 25, 2005
Her name is Amy Callahan. Three weeks shy of her 14th birthday, she's 4 1/2 feet tall and weighs 47 pounds.
And like Terri Schiavo, Amy survives with the help of a feeding tube, which channels liquid nutrition and distilled water directly into her stomach.
Early Wednesday, Amy's parents drove her 45 miles from their home outside Wheatland to Sutter Memorial Hospital in Sacramento because their only daughter was moaning and writhing for reasons unknown. It has been that way on and off for most of her difficult life.
Amy was born with Edward's syndrome, a rarer and more severe form of mental retardation than Down syndrome. Only 10 percent of babies with the genetic defect survive their first year.
As the debate over Schiavo's right to live or die continues to divide the nation, parents like Lowell and America Callahan have emerged to argue for continuing the Florida woman's life, saying they know better than most what she and her parents are enduring.
"Society thinks these children are a burden. Until you have one yourself, you don't realize it's a labor of love," said America Callahan, whose unusual first name is a family legacy going back generations and continues with Amy, whose real name is America.
"She has taught us so much and she doesn't even speak. She has taught us compassion. She has taught us appreciation. She has taught us unconditional love."
A visit Wednesday to the pediatric intensive care unit found America Callahan alone in the room with her daughter, holding Amy the way she has held her for so many years, whispering to her and telling her how special she is, that the pain she is feeling will go away soon.
"Hey Peanut Butter, Mama's here," she said in a singsong voice. "What's the matter? It's OK. We're going home. Easter's coming Sunday. Mama's here. Mama's right here."
Amy moaned and writhed and fidgeted. The feeding tube connected to her stomach leads to an elevated bag containing a nutritional formula called PediaSure.
"This is what we feed her," America Callahan said, holding up one of the pop-top cans. "She gets five of these a day. If she doesn't get fed, she knows it. She suffers."
The Callahans also have six sons and two adopted children. Amy's medical costs are split between the family's private health insurance and Medi-Cal, the combined federal and state health insurance program for low-income families or individuals.
When Callahan was four months pregnant, doctors told her that the baby she was carrying would be badly deformed and have almost no chance to survive. They urged her to have an abortion.
"I didn't believe in that," she said.
Said Lowell Callahan, "We were told she would die within three days. Doctors don't know everything."
Amy was born down the hall from the hospital room she was admitted to Wednesday. If all goes well, she could be home by the weekend, her mother said. For whatever reason, she has beaten all odds. She is unable to walk or talk or communicate in any traditional way.
But her mother says Amy has known joy often enough, that she perks up when there is music in the room or when someone reads to her. At church, she often tries to sing, letting out an impossibly long, monotone hum.
Regarding Schiavo, America Callahan says, "I think it's terrible what they are doing to her. I have been crying and on my knees for this poor woman."
On the other side of town from the hospital, 70-year-old Pat Brown feels much the same way. His son, Ryan, has survived on a feeding tube for nearly 15 years, since the young man survived a car crash that killed his girlfriend and another woman.
Brown cares for his son, whose medical costs also are covered by private and public insurance, at his Sacramento home, noting that Ryan, now 33, still has plenty of life in him. When the TV is on, for instance, he seems to react to comedians like Sinbad and Eddie Murphy.
Both families say that their children have no more brain function than Schiavo, but to them, that's not the point.
"I know he's in there. He just can't get out right now, maybe never," Brown said.
"I still have a son and I love every single minute I have with him," he said. "He has never had to wonder if his father loves him."
Brown's former wife, Lucy Brown, lives nearby and is also devoted to caring for Ryan.
Pat Brown says the debate over the Schiavo case hasn't focused enough on the plight of her immediate family.
"If you pulled the plug on my son, he wouldn't give a rat's patootie, I'm sure," he said. "But if you pulled the plug, you would pull the plug on me."
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