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Illness injects urgency into family life

Three youngsters know their mother is dying of ALS. Their parents try to answer all questions gently but honestly.

January 28, 2007|Martha Irvine | Associated Press Writer

GRAYSLAKE, ILL. — 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 her symptoms, including slurred speech and weakness in her right arm. The diagnosis: 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?

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 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. Then he 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 elder children will be lucky to reach their teens 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 Zachary, 3 -- 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, to have the conversations they can't have later.

"Did you go to doctors?" Emily asks one evening.

"Lots and lots of doctors," Aimee says, telling Emily and Nicholas of tests with needles stuck into her legs and above her eyebrow.

"That one hurt more than anything," she says of the latter.

Often, her kids ask why her muscles aren't working.

At first, Nicholas thought, "Why can't she just exercise to be stronger and faster?"

Emily remembered her mom talking about the importance of good nutrition and wondered, "Did mom eat too much dessert?"

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

One day, one of her children asked, "How long will it take for your skin to fall off after you die?"

Aimee winced inside, but replied in a matter-of-fact tone that she wasn't sure how long it would take, but it wouldn't matter because she wouldn't need her body then anyway.

Often, Nicholas' queries are fact-based. Because he's a baseball fan, he's interested 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.' "

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