A mother’s gentle honesty in the face of death

Children's questions
“Did you go to doctors?” Emily asks one evening during dinner.

It’s a question she’s asked many times before, but Aimee willingly responds again.

“Lots and lots of doctors,” she says, telling Emily and Nicholas about 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 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.

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, while she wasn’t sure how long it would take, 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, 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.

He also frets that a new stepmom might throw away his Pokemon cards, which he calls “one of my most prized possessions.”

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.’”

Sometimes, Emily fantasizes about a special telephone to heaven she could use to call her mom. But what will she do, she wonders, when she needs a hug from her mom?

Aimee’s eyes fill with tears at the thought of not being there. “There’s no way to prepare yourself for the heartbreak of a child asking, ’What am I going to do when you’re not here?”’ she says. “There’s really no way to answer those questions.”

Still, she tries — and reminds Emily that her dad, brothers and other family will be there for her when she’s not. “And if you’re really, really still and quiet, I think you’ll be able to think of what I might say,” she says.

Working through concerns
Their worries about the kids, coupled with their own grief, can overwhelm Aimee and Jim. So they meet regularly with a social worker at the Les Turner ALS Foundation in nearby Skokie to help them work through their concerns. The social worker has encouraged their honesty with the kids, but also suggested that they bring conversations back to the present whenever possible.

“Right now, I’m here and I’m able to do this,” Aimee often reminds her kids, whether “this” is baking cookies, taking Emily to a Clay Aiken concert, or going last fall to the World Series to see her beloved Cardinals win.

“Do you worry about Zachary not remembering who you are?” Nicholas asks his mom.

“I do,” she says. “But you and Emily will tell him about things we did — special trips to Mexico and Disney World — and show him pictures.”

It isn’t always the idyllic scene Aimee would like her children to remember.

As all couples do, she and Jim occasionally argue. And the kids have their moments, too.

Sometimes, they claim they can’t understand Aimee’s directions because of her slurred words, when they clearly do. So she calls them over to repeat what she’s said.

“Look me in the eye,” she tells them, pointing at her own eyes. “Right here.”

Sick or not, Aimee knows disciplining is part of being a parent. Still, she hopes her kids will recall the happiest times.

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