"that could happen 2 me". Brain damaged childs family face tuff choices

That could happen to me�: One family with a brain-damaged child talks through a hard choice The Associated Press LOUISVILLE, Tenn. The Spencers chose the study with the cheery rose-covered wallpaper border and their grandkids' crayoned drawings as the setting for their discussion about death. Mom and Dad, Uncle Joe and sister Maya gathered round. Two phones were propped on the desk so that more siblings could listen in. Then 29-year-old Thor Spencer backed his wheelchair next to a file cabinet, and waited for his mother to explain why they had convened this Easter night. It was 11 years earlier, after another Easter gathering, when Thor had the car accident that put him in a coma for months and left him impaired by brain damage. Living at home now, he returns to the hospital several times a year to deal with setbacks or surgeries - sometimes staring down death. He once told his mother, after an especially grueling procedure, "If this is what my life is going to be like, Mom, I don't want it." But no one mustered the courage to ask him directly: If it ever came down to it, would you want to live or die? Then Thor saw Terri Schiavo on the news. His mother, Cheryl, explained that Schiavo never put her wishes in writing, and so the ultimate decision of whether to keep her alive artificially was left to her husband - and he and her parents couldn't agree. "That could maybe happen to me, couldn't it?" Thor said, and then asked for a family meeting to talk it out. And so they came together - after a dinner of taco salad and strawberry shortcake and chatter about college hoops and movies. It's been said that Terri Schiavo launched a national discussion about living and dying. This is one family's part of the conversation. --- "Our beloved Father in heaven, we're thankful for this opportunity to gather together as a family to talk about family matters ...," Cheryl Spencer prays to open the meeting. After a chorus of "Amen," she turns to business, referring to the Schiavo case and adding, "It kind of got Thor thinking that maybe he needed to make some plans about his life, what choices were out there for him. ... He didn't want to be in Terri's condition, and he didn't want our family to be in the same place as ... her parents." At 53, Cheryl is a ball of energy - the matriarch and cheerleader who has kept the house operating and spirits up in the years since Thor's accident. She traded a career running a secretarial service to take care of him, and is now president of the Tennessee Brain Injury Association. She has her own strong opinions about what makes a life worth living and when to say "enough." When doctors over the years asked if she would want to sign a do-not-resuscitate order on Thor's behalf, the answer was always, "Absolutely not." Devout Mormons, the Spencers believe in eternity and a purposeful life after death. "The bigger concern," Cheryl has said, "is whether or not you're done here. ... If you kill all hope, then you'd never see miracles." Nonetheless, she also has seen her son's face twisted in pain, heard his anguished cries, and watched helplessly when all she wanted was to make it stop. She remembers wondering: If the decision to end treatment was hers to make, could she? The meeting takes it out of her hands. But she worries that her son's wishes may be very different from her own. She keeps these fears to herself and moves on to the documents she e-mailed to the family: a living will prepared by the Legal Aid Society of Middle Tennessee and a "Guide To Health Care Decision Making." "What they're saying," she commences, "is our medical technology has kind of outstripped the mechanisms that we have to deal with people who have really severe health situations." She describes circumstances in which someone might want a living will - terminal illness, permanent disability - and reasons why a person might refuse treatment. Is the condition irreversible? Is the treatment extreme? Does the discomfort outweigh the benefits? Does the treatment prolong life under intolerable conditions? As his wife talks, Rick Spencer, a 55-year-old business analyst, listens from a rocking chair. He has told Cheryl his view of death: If anything were to happen to him, just let him go, bury him in a pine box and move on. He's comforted that Thor can still make choices for himself. Of the Schiavo case, Rick's views are clear: "It's not a court question; it's a family question." But he, too, doesn't know what to expect from Thor - or the other kids participating in the meeting. Their youngest, 18-year-old Maya, sits on the floor clutching a pillow. Three more are on speaker phone - daughter April, 28, and sons MacArthur, 27, and Morgan, 26. So far the group, Thor included, has remained utterly quiet. "Can you guys hear me at all?" Cheryl asks those on the phone. "We can hear you just fine," April assures her mother. Cheryl continues, stressing that everyone could have a different interpretation of "intolerable" or "extraordinary." Then she turns to Thor: "Why don't you just tell us what your concerns are." The room is very still as he begins to speak. These days, Thor is the embodiment of those miracles his mother so believes in. Though mostly confined to a wheelchair, he can walk short distances using grab-handles. He showers alone, uses an electric toothbrush, combs the coat of his service dog, a golden retriever named Hoffman. On May 8, he expects to graduate from technical college with an associate's degree in business management. All of this is a far cry from the battered 18-year-old snared in a maze of feeding tubes and ventilator lines. In 1994, the Spencers lived in Sierra Vista, Ariz. Thor had moved to nearby Tucson to work construction while saving money to go to college. That Easter, he drove to his parents' house. On the way home, he fell asleep at the wheel. At the hospital, doctors told Cheryl and Rick there was "just nothing" going on inside Thor's brain. But he woke up from his coma, went home, went on. Problems remain. He is legally blind, deaf in one ear and suffers memory loss. He has endured bouts of pneumonia that put him back on a ventilator, and an agonizing procedure to drain spinal fluid. Though he can talk, his speech is badly distorted. Knowing that, his family watches his lips as he searches for the right words. "I know it's uncomfortable," he begins. His next few words are unintelligible, but what follows is clear: "I don't want to die." Cheryl, acting as interpreter for those listening by phone, jumps in. "OK, you don't want to die. Is that what you said?" "Whatever it takes," Thor replies, speaking slowly to enunciate each syllable. "An-y-thing." "So if you need extraordinary intervention?" his mother asks. Thor interrupts: "I'd rather be alive than dead." But Cheryl wants to be sure. "Now, you know they say, `vegetative state,�" she presses. "Do you know what that means?" "I'd rather have that, too," Thor says. Then, he runs down the list of obstacles he has overcome. Doctors said his clenched right arm might never relax. It did. Doctors said he might not learn to talk again. He can. Doctors said he probably would never walk on his own. He does. "They were wrong," he says. "They were wrong every time. So, don't make that decision from what they say." "Is there any circumstance where you would feel differently?" Cheryl asks. A few seconds pass before Thor responds: "Not that I can think of." For those on the phone, Cheryl offers a recap. Thor, she says, wants "whatever measures are necessary" to preserve his life. MacArthur's voice comes over the line: "Regardless of the situation?" "Yes," Thor insists. Cheryl begins a roll call. "Mac, are you understanding that?" "Yes." She asks the same of her other children who are listening, and Rick, and Joseph Rifenbery, Thor's uncle. All understand. They'll pass the word to Thor's other brother, Mason, who could not join in. "I've gotta tell you, I'm real relieved," Cheryl says. "I was a little worried." She sits back, and finally allows herself a smile. --- It took 13 minutes. Eleven years of wondering, and 13 minutes to put their questions to rest. The Spencers quickly moved on to more pleasant topics. Thor didn't sign anything specifying his wishes; that will come later. What matters, the family agrees, is that everyone now knows what he wants. Thor explained his decision: Not long after his accident, in the dark obscurity between coma and awareness, he remembers not really knowing whether he was alive or dead. Then he saw his mother enter the room, and he cried out in joy: "I'm alive!" "I was fighting to get out of that," he says, "because I didn't want to die." But isn't it terrifying to allow himself the possibility of going there again? "Scared isn't the right word," he says. "I wouldn't like it. But if it comes, I'm gonna fight." Thor didn't want his family to give up on him because he isn't ready to give up on himself, despite what he's said in the past. "Never have," he says. "Never will." The meeting concluded as it began, with a prayer. Then Uncle Joe said goodnight, Maya went to bed, and Dad had dessert while Mom snacked on strawberries. Thor parked his wheelchair in the family room next to Hoffman and stroked his dog's ears. For the longest time, they stayed that way, both as content as could be ~~~~~~GOD BLESS you THOR & FAMILY =^.^=