Aimee and Jim Chamernik could have sugar-coated the sad news
to their young children -- that Aimee was terminally ill. But they've taken a
different path -- one of tender honesty
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 symptoms Aimee
had been having -- slurred speech and weakness in her right arm among them.
The diagnosis was amyotrophic lateral sclerosis, or ALS -- a degenerative
condition of the nervous system also known as Lou Gehrig's disease.
How could they explain to their eldest son, the first in the family to notice
his mom's slurring, when she read him bedtime stories, that there is no cure?
It's tempting for parents to want to shield children from such a painful
reality. But the Chamerniks have chosen a different path -- one of gentle
honesty.
The process that began that night more than two years ago with a question from
their son has only 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 and then
responded in his seven-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 woman whose oldest children will be lucky to reach
their teenage years before she dies.
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.
'I'm still the same person ... inside'
Already, her children -- Nicholas, 9, Emily, 7, and three-year-old Zachary --
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 pop can, unbuckling a car-seat strap.
Even as her body weakens, she constantly reminds her children she's still the
same person inside.
"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.
Aimee and Jim Chamernik could have sugar-coated the sad news to their young
children -- that Aimee was terminally ill. But they've taken a different path --
one of tender honesty
"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.
At first, Nicholas thought exercise would make his mom stronger and faster.
Emily, remembering her mom talking about the importance of good nutrition,
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 her motor neurons are like "mailmen" -- while some still deliver
"letters" from her brain to her muscles, 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, 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's 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.
His sister is 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.
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 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.
"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.
The Chamerniks' two-storey 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, sometimes there are arguments and every now and then the kids use
their mother's slurred speech as an excuse for not doing what she wants.
In other words, it's as normal a household as it can be under the circumstances.
MOTHER'S FAITHFUL LITTLE HELPERS
Nicholas has become "a little activist," say his parents. 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." Like Nicholas, she's also one of
her mom's most faithful helpers.
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."
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 does laundry, makes
breakfast and brings Aimee coffee 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."
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.
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 her 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."
MGM
© ALS Independence 2003-11