Illness injects urgency into family life
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.’ ”
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?
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 her mom is 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.
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 suggests 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.”
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.
Aimee 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 loves 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 -- the laptop computer, books, Matchbox cars for their little brother.
When there are too many toys on the living room floor, Emily will say, “Mommy can’t walk here -- we need to clean up.”
Because mornings are Aimee’s most difficult time, 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 that 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.
Just before Aimee’s 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. He used to call home during school lunch to make sure his mom was OK, but 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.”
Aimee’s site: https://www.askaboutaimee.com
