A mother’s gentle honesty in the face of death

A haven at home
Indeed, even with all they are facing, the Chamernik’s two-story home remains the family’s haven, filled with smiling photos and images of Pooh and Tigger on the living room walls. There often is laughter, with Nicholas, Emily and Zachary wrestling on the floor, putting together puzzles or organizing their many Pokemon stuffed animals and cards.

Nicholas is now in fourth grade. For a recent school project, he described himself as hyper, funny and brave — brave, partly because he stood in front of his class and told them about his mom and ALS, short for amyotrophic lateral sclerosis.

It’s one way he’s become “a little activist,” as his parents call him. For his last two birthday parties, he’s asked friends to bring donations for ALS research instead of gifts — and raised more than $350 last year.

“I just want my mom to be healthy,” he says.

Her mom describes Emily as “a pirate at heart,” most comfortable in jeans and a T-shirt and quick with a wide grin that has become increasingly toothless. Often hungry, she’s known for her love of Mexican food, especially her mom’s “taquitos.”

Like Nicholas, she’s also one of her mom’s most faithful helpers. They constantly retrieve items for her, from her laptop computer to books to Matchbox cars for their little brother.

When there are too many toys on the living room floor, without prompting, Emily will say, “Mommy can’t walk here — we need to clean up.”

"I wish they could just be kids"
Because mornings are Aimee’s most difficult time of day, Emily and Nicholas also are counted on to help get themselves ready for school. Jim races around the house doing laundry, making breakfast and bringing Aimee coffee and the sports section before he goes to one of his two jobs as a law firm manager.

Aimee can’t help but feel guilty about all the 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.”

As he speaks, Emily sits on his lap. Nicholas and Zachary are upstairs getting ready for bed, while Aimee works in the kitchen.

The sweet aroma of cookies, made earlier in the evening, is slowly fading.

A mother's will
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.”

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