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ข่าวประจำวัน : Mom with ALS helps her kids through long goodbye

POSTED: 1557 GMT (2357 HKT), January 31, 2007

story.aimee.class.ap.jpg

Aimee Chamernik, center, takes part in a math scavenger hunt in her son Nicholas' fourth-grade class.

GRAYSLAKE, Illinois (AP) -- Seven-year-old Nicholas Chamernik had rarely seen his parents cry. So he felt a pang of worry when he looked up one evening to see his father wiping away tears.

"Dad, what's wrong?" he asked.

Jim Chamernik was too choked up to respond. After 18 months of grasping for answers, he and his wife, Aimee, finally had an explanation for symptoms Aimee had been having -- slurred speech and weakness in her right arm among them. The diagnosis was Lou Gehrig's disease, a degenerative condition of the nervous system, also known as ALS.

There is no cure. But how could they explain that to their eldest son, the first in the family to notice his mom's slurring, when she read him bedtime stories? (Watch and hear Aimee tell her story. )

How, they wondered, do you tell a child that his mom is dying?

It would be tempting for a parent to shield a child as long as possible from such a painful reality. But the Chamerniks have chosen a different path -- one of gentle honesty. Theirs is the story of two parents doing the best they can to help their children understand and cope with terminal illness.

The process began that night more than two years ago with a question from their son. It has only led to more questions -- and even on their toughest days, the Chamerniks have attempted to answer each one.

'Dad, what's wrong?'

Aimee -- seeing that Jim was struggling -- took a deep breath and sat down in the family room of their suburban Chicago home. She pulled Nicholas onto her knee and put her arms around him.

"You know I'm having trouble with my muscles, right?" Aimee began, surprised at her own composure. Her son nodded.

"Well," she said, slowly, "Daddy's sad because the doctor told me they're not going to be able to help me get better."

Nicholas sat there for a moment, thinking about what his mom had said and then responded in his 7-year-old way. "You know, Mom, when I grow up, I'm going to be a paleontologist and a St. Louis Cardinals baseball player and a zoologist and a person who studies plants," he said, breathlessly.

"Well, I'm also going to be a doctor," he said. "So if you're still alive, I can help them find out how to make you better."

Four words from that conversation still echo in Aimee's head --"if you're still alive."

They were the first indication that, at some level, Nicholas understood the gravity of her slow decline. That moment also marked the beginning of a long goodbye for a 37-year-old mother whose oldest children will be lucky to reach their teenage years before she dies.

"I didn't think she'd be alive as long as other people," says Nicholas, now 9. "But I still thought it'd be a long time."

Even Aimee's doctors don't know exactly how long she has. The average life expectancy after an ALS diagnosis, they've told her, is two to five years. It's been a little more than two so far.

Already, her children -- Nicholas, Emily, now 7, and 3-year-old Zachary -- have seen her fall several times. She reluctantly uses a cane in public spaces and struggles with tasks most people take for granted -- navigating stairs, opening a soda can, unbuckling a car seat strap.

Even as her body weakens, she constantly reminds her children: "Mommy is still the same person inside."

But knowing she will eventually lose her ability to move and speak, there is a quiet urgency in the Chamernik household, to pack in as much family time as possible and to have the conversations they can't have later on.

A mom's answers

Aimee tries to explain what's happening to her body in ways they'll understand: She tells them how motor neurons are like "mailmen" -- some that still deliver "letters" from her brain to her muscles, while others have quit and headed to Florida for vacation.

No question is off limits. And often, they come out of nowhere.

Often, Nicholas' queries are fact-based. Because he's a baseball fan, he's interested, for instance, in Lou Gehrig's fight with the illness. He copes by focusing on possible solutions, dreaming up inventions that might help his mom walk and even run again.

His sister's reactions are often more emotional.

"Emily sometimes will run up to me and throw her arms around me so tight and say, 'Oh, Mommy, I just LOVE you,' and say it with such intensity and hug me with such intensity that it takes my breath away," Aimee says.

"My reaction in my head is, 'No, no, don't love me that much, because if you love me that much, it's going to really hurt when I'm gone."'

Aimee can't help but feel guilty about all the work Jim does and about the extra responsibility the kids take on.

"As children, they're asked to do a lot of things," she says, quietly. "Sometimes I wish they could just be kids."

More than anything, Jim worries that, once Aimee's gone, he won't be enough for their children -- even for little things, such as doing Emily's hair.

"It's tough for me to talk about a rosy future when there isn't one because their world revolves around their mother," he says one evening in the living room. "There's no substitution for what they're going to miss."

Just before her birthday, it occurred to Nicholas that his mom would be the same age that Lou Gehrig was when he died.

"I just wondered," he said, hesitantly because he didn't want to hurt his mom's feelings, "If he was 37 when he died, maybe you would die when you're 37, too."

His mom looked at him.

"I can't promise you I won't die in the next year, because I could be in a car accident or something like that," she said. "But I won't die from ALS in the next year."

Immediately, she could sense his relief.

To this day, that conversation remains his safety net -- and while he used to call home during school lunch to make sure his mom was OK, he doesn't do that anymore.

"I hope I'm not misleading him. It would be fairly shocking for me to drop off in the next six months," Aimee says. "But a little part of me -- there's that reality that this is fatal and you can't know."

If the disease is strong though, so is a mother's will. Aimee focuses these days on her vow to her son to go on living.

"Now," she tells herself, "you better do everything in your power to make sure that's true."

Copyright 2007 The Associated Press. All rights reserved.This material may not be published, broadcast, rewritten, or redistributed.

ข่าวประจำวัน : 1 February 2007
แหล่งที่มา CNN
อ่าน 272





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