am occasionally asked why I carry a miniature game on my keychain. It's
a tiny replica of the plastic board game Trouble, complete with the bubble
in the center that you press to shake the dice. I pause, and try to come
up with an easy answer.
When I was in college, my mother, Irene Normark Schilling, was
awarded a grant to study accessibility of library resources to people
with disabilities. For a year, Mom attended classes at a university two
states away, returning every other weekend to visit, do laundry and load
the freezer with ready-to-heat meals for my father and brother. We were
stunned when she was diagnosed with cancer halfway through the year.
Mom managed to finish her year of studies, but the aggressive treatments
for lymphoma were rough on her. In between treatments, she answered a
volunteer request to visit a young girl with cerebral palsy. Kim was a
beautiful, severely disabled girl with no family of her own, so my mother
became her special visitor. Mom would tell me about their visits and about
the gifts she had bought for Kim, specially selected for a girl with limited
use of her body. A miniature doll to wear in a locket around her neck
made Kim's eyes light up with delight. A plastic board game with a bubble
in the middle allowed Kim, with her limited use of her hands, to successfully
roll the dice, while the game pieces remained in place if she missed.
Shortly after I graduated from college, my mother lost her battle with
cancer. She had been my strongest supporter and my best friend. I missed
her immensely. Many years later, I married and had a daughter of my own.
When my Claire was diagnosed with Rett Syndrome, a neurological disease
that causes severe physical and mental disabilities, I was devastated.
Family members were well-meaning, but unable to cope with Claire's differences.
While I mourned the loss of the normal future my daughter would never
have, I also mourned the loss of a mother who instinctively knew how to
see past the disability to the person inside. How could I be strong enough
to raise my daughter without my mother's support?
One day, Claire had a seizure while on a field trip with her special
education class. Claire was hospitalized and heavily sedated. By midnight,
we found ourselves wheeling a wide awake little girl around the ward,
trying to keep her happy and quiet while the other children slept. Exhausted,
we happened across a recreation room. On a shelf up high was a plastic
board game with a bubble in the middle. I helped Claire roll the dice
by pressing her hand on the bubble, and her face lit up as the dice bounced
inside. I silently thanked my mother for the support she had given me,
years in advance.
When people ask about my keychain, I simply smile and answer that it
reminds me of my mother.