Life and Death: Mother Copes With Disclosing her Illness

A mom. A dad. Two boys. And one girl. A picture-perfect Midwestern family vacations in Europe. They eat strange food in England, take typical tourist pictures at Stonehenge and climb the Eiffel Tower.

To a bystander, the Chamernik family might look like characters in the average home movie except, perhaps, for the stark fact about the mother.

Her name is Aimee Chamernik. She's 38 years old. And she's dying.

She is dying and she is not fighting that fact. "I'm gonna beat this thing," she says. It's not her goal to impress by saying this. For her, it's something else. It's about her kids and showing them something in the time she has left.

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She's attempting to show them how to live -- in a hurry -- before she dies. And so they go on vacations, they do homework together and they bake cookies.

Click here to see some of Aimee Chamernik's responses to your questions and comments.

Chamernik's disease, amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, makes her progressively weaker. "Nightline" taped interviews with Chamernik's family over several months, beginning early last spring.

Just as Aimee's death approaches gradually, so has her gentle approach to telling her children the truth. At first, she just couldn't.

'Don't Love Me That Much'

"You know, Emily … at the time would run up and hug me so tight and say, 'Oh Mommy, I just love you soooo much,'" Chamernik says, recalling her daughter's affection. Emily, now 7, was just 4 years old at the time of her mom's diagnosis. "And I would think, No, don't love me that much, because if you love me that much it's gonna really, really hurt when I'm gone. And I'd rather start severing that connection now."

Chamernik and her husband, Jim, had been married for 12 years, settling in north of Chicago and having kids when the disease set in ever so subtly, first going after the muscles that controlled her speech.

"I would be reading out loud to Nicholas, who was 5 at the time," she recalls, "and he would correct my pronunciation because I would have some odd slurring or difficulty enunciating the words."

In time, the disease found her legs and later began spreading to her hips and her arms. All these muscles will cease to work eventually, until one day it will be her chest muscles and then her breathing will stop. On average, it takes three to five years. Aimee is just starting year four.

And so, she didn't want her kids to know or even get too used to having her in their lives.

"And that's silly," said Chamernik, "I mean, I'm their mom. I can't stop being their mom. How do you even begin to, you know, tear their world apart?"

But her plan to stay silent didn't work. Nicholas, the oldest child noticed something was wrong early on, when his parents only barely knew how sick Aimee was.

'Why is Dad Crying?'

Nicholas, Aimee Chamernik's oldest son who was 7-years-old at the time confronted his parents, who were both in tears. "[I] was crying," she said, "and he said, 'What's going on? Why is Dad crying?' Because he'd never saw that before."

Around the same time, Aimee Chamernik who had gone into a deep emotional dive had a kind of awakening. They call it the "Taco Story" and it occurred when Chamernik went to pick up her daughter from preschool one day.

"Emily kept saying, 'When are we going to have tacos again? I really like tacos.' One day … she hops in the van, all excited as usual, and I turned and said, 'Well, somebody I love very very much has said they would like to have tacos.' She's like, 'That's me, that's me!' And in that moment, she has a huge grin, and she's bouncing up and down.

"I realized that, you know, this is life. Life is making tacos. Life is getting that reaction from her and getting that smile."

"They're good tacos too," her husband Jim chimes in.

From that point, according to Aimee, she was alive again to her family and to a new role she decided to pursue: campaigner for more research money to find a cure or treatment for ALS.

She decided to make herself a symbol for the cause.

"There isn't a large window of opportunity for most patients to be able to make a difference in the world," she says. "We feel like since I'm fortunate and have a fairly slow progression that we need to take what time we have and use it, spending as much time making as many good memories as possible and spending as much energy as we can spare on making a difference in this fight."

'Ask About Aimee'

Chamernik's children are a part of 'Ask About Aimee' , a group she started to raise awareness about ALS. And so it is clear that the kids know their mother is in trouble.

Nicholas -- the oldest -- truly understands how much trouble. Jim and Aimee actually met with a social worker to help them figure out how to tell the children.

"And Nick came home from school, he and I were talking about -- he was asking if I would ever have to use a wheelchair. That was the jumping off point for discussing everything about ALS."

She told her son how she would have to use a walker and how, eventually, all of her muscles would stop working.

"He got choked up at a few points, but he is very much into wanting to figure out a solution."

Emily knows some, but not yet as much as Nicholas.

"Emily was much more emotion-oriented. She wanted to talk about heaven; she wanted to talk about how she was going to talk to me if I was in heaven. Maybe God can make a phone so I can call you in heaven when I need to talk to you."

Not Taking it Sitting Down

Recently, traveled to Washington, D.C., with a group of activists lobbying Congress for more research money for ALS. At this point, she needed the wheelchair, with her husband Jim pushing.

But when a member of Congress approached to shake hands, stood to do so.

"For as long as I possibly can, yeah, I think that's important."

For more information about ALS, visit the following Web sites:

Les Turner ALS Foundation

International Alliance of ALS/MND Associations on the Internet

A Ride for Three Reason

Ask About Aimee