Within seconds after being diagnosed with amyotrophic lateral
sclerosis, or ALS, Aimee Chamernik turned to her husband, Jim, and
offered a playful smirk.
"See? I'm always right," she told him jokingly.
This knee-jerk exchange on Sept. 8, 2004, has epitomized her
upbeat attitude since learning she was suffering from the early
stages of ALS, often known as Lou Gehrig's disease. The now
44-year-old Grayslake mother of three has since learned that ALS
didn't spell her doom, but instead sparked timely epiphanies,
including a lesson for all parents.
"ALS keeps me present in a way I perhaps wouldn't be if I were
healthy," says Chamernik, who struggles to speak clearly.
She began noticing her first symptoms with slurred speech and
trouble enunciating bedtime stories for her young son. Then she had
trouble with muscle control, a weakening wrist, and stumbling when
"I grew more and more convinced that the best match for my
symptoms was ALS," Chamernik says. "We have a Mayo Clinic Family
Health Book and I would terrify myself by reading the entry for ALS
and how well it seemed to match."
Her doctors, though, suggested otherwise after months of tests,
with one neurologist confidently telling her, "We can be thankful
it's not ALS."
"For months, we clung to that one statement whenever we started
to panic," Chamernik recalls.
But their clinging hope led to an inevitable reality-she would
soon become a disabled mother raising three children while battling
a relentless terminal illness. ALS is a progressive, degenerative
disease affecting motor neurons, specialized nerve cells that carry
impulses from the brain to the muscles. These motor neurons
gradually cease functioning and die, as does everyone eventually
That summer, Chamernik spent many nights silently watching her
infant son, Zack, sleeping in his crib.
"I was crying into the wee hours of the morning at the thought
of my youngest son not even remembering me," she says. "And also at
the thought of Nick and Emily having to deal with the loss of their
She pondered her kids' lives without her there, and all the
daily activities and memorable milestones she would miss. School
events, weekend outings, high school graduations, college degrees,
wedding celebrations, grandchildren, the list went on and on.
"I thought of the questions I wouldn't be there to answer, the
victories I wouldn't be there to celebrate, and the pain I wouldn't
be there to comfort," she says.
Plus, after all her mothering to other children through the
years as a babysitter, nanny and Sunday school teacher, she
wouldn't be able to mother her own children, she feared.
In time, she was rescued from her anxieties by her own children:
Nick, now 16, Emily, who's 14, and 10-year-old Zack.
"The kids are what brought me out of that dark period,"
Chamernik says. "Specifically, one little girl's obsession with
having her favorite dinner of tacos, beans and our special homemade
For months, Emily begged her mother to make tacos, but Chamernik
simply wasn't up to it emotionally. One day after preschool,
Chamernik replied to her daughter, "Yes, because a little girl I
love very much has been asking."
"That's me! That's me!" Emily yelled while bouncing up and down
in her car seat.
Chamernik saw that smile and those bright eyes and she knew
right then she wanted to spend as much time with her kids,
regardless of how long it would last.
"I realized that while ALS would claim my life, I didn't need to
let it claim my life today," she explains. "I also realized I could
find great joy in something as ordinary as making my daughter happy
by making tacos for dinner."
Over the next few months and years, whenever Chamernik didn't
feel up to doing something, she reminded herself of her new
mantra-life is making tacos-compelling her to push through.
"The kids were, and still are, my primary focus when it comes to
the impact of ALS on our family," she says.
ALS typically steals a person's life in less than five years,
one muscle at a time, one movement at a time, one breath at a
"I've seen it affect too many families," says Laurie Fieldman,
director of social services at the Les Turner ALS Foundation in
Fieldman has known the Chamernik family for nearly a decade
through the foundation, which funds in-home medical professionals,
support group meetings and equipment banks.
"Through the years, Aimee is the most determined ALS parent I've
ever seen, especially as an active parent in her children's lives,"
Fieldman says. "She's right there every day as their mom despite
her physical limitations."
"It's really tough when you can't get up and help your kids or
cater to their daily needs, but she somehow pulls it off," she
adds. "She is simply amazing from everyone's perspective."
Like many terminal illnesses, ALS effectively reveals, not
shapes, someone's character. This holds true for Chamernik, who is
an anchor in the Chicago-area ALS community, Fieldman says.
"She has certainly taught me a few lessons," she says.
Chamernik has shown how to persevere through example, like
continuing to play wiffle ball with her kids by sitting in a chair
and pitching. Or by playing board games instead of hide-and-seek.
Or by cooking dinner with the kids being her arms and legs.
"I soon realized they cared less about what we were doing and
more about the fact I was doing something with them," she says.
The most painful question for any ALS parent from their child,
"Are you going to die?" is one that must be answered honestly yet
tactfully, Fieldman says.
Chamernik's kids know its ultimate outcome. Nick once told her
he hopes to be a doctor to help find a cure for ALS if-not when-she
was still alive.
Chamernik uses one of Fieldman's counseling strategies, focusing
on the present with her kids.
"I do my best to remind them of all the activities I can still
do at the moment, even as that list of activities is shrinking,"
Chamernik says. "We also talk a lot about how I am still the same
person on the inside."
Still, the parent-child role has become reversed in many ways.
She doesn't help them with daily tasks, they help her. When she
falls down, they help her up.
"One of the worst feelings is when Zack gets hurt and I can't
run to him and scoop him up to comfort him," Chamernik says.
Instead, Emily scoops up Zack and brings him to their
"When I can't help, nurture, comfort, teach or take care of my
kids, I feel like less of a mother," Chamernik admits.
However, she makes up for it in other ways, such as fighting
through adversity in the face of dire circumstances. When she falls
down, they watch her drag herself to the stairs, strain to lift one
knee to the bottom step while mashing her face into the carpet, and
with every muscle that's still working, push and pull her way back
to her feet.
They also watch her bake cookies, make props for school plays,
and volunteer for causes she cares about even as she has problems
eating, walking and speaking.
Nick noted to his mother, "How often do you have a few bad
moments and then do a 180 and put on a brave face? I've never met
anyone emotionally stronger than you."
Some of her emotional strength comes from ALS support groups,
especially one for younger parents and their unique challenges with
raising a family. There, she could laugh, cry and rage against the
vicious machinations of the disease.
"We talked about ways to keep things as normal as possible for
our kids, even as we knew there was nothing normal about watching a
parent slowly waste away before their eyes," Chamernik says.
Similar to ALS sufferers, that group eventually atrophied, one
member at a time, leaving Chamernik with survivor's guilt for being
the last one standing, so to speak.
Through it all, Chamernik's husband, Jim, has been her one-man
They became fast friends as college freshmen at Illinois
Wesleyan University, though didn't begin dating until their junior
year. The next fall, she spent a semester studying in Paris and he
wrote her nearly every day along with sending her remixed music
tapes and Reese's Peanut Butter Cups.
She knew such an attentive and caring boyfriend would make a
wonderful husband. He hasn't let her down.
"The qualities that make a successful parent don't change just
because the parent is disabled or ill," he says.
In many ways, Chamernik views her ALS as a gift, not a
"It's harder to take time with my kids for granted when I feel
the constant awareness of that time being limited," she says. "So
we talk. And talk. And talk."
They talk even as they adjust to her disease's slower-than-usual
progression. They talk even as her kids grow into sometimes moody
ALS, Chamernik notes, is a constant reminder to not forget the
fleeting joys of even the most mundane moments, such as riding to
school, watching a gymnastics class or just hanging out at
"Or making tacos," she says playfully.
Jerry Davich is a freelance writer and father of two living in the Chicago area.
See more of Jerry's stories here.
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