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 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 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 oldest children will be lucky to reach their teenage years before she dies.
It’s a story of a courageous mother's gentle honesty!! ........it’s a true story.