Genes and Heroes


“Surmounted difficulties not only teach, but they hearten us in our future struggles”  James Sharpe

Growing up, my extended family on my father’s side included very Special Aunts who lived with “Chronic Conditions.”  As a little girl, I never questioned such.  When, Aunt “Mimi” was wheeled in through the front door of my grandmother’s annual Christmas Eve party, snowflakes whipping all around her, she beamed with delight at the sight and sounds of nieces and who waited for her.  Reaching out, I quickly grabbed her petite hand to hold in mine.  Her motor skills were dwindling even then.  Often, I sat on the floor near her wheel chair to listen to stories describing her latest craft project.  At her home overlooking the bay, she created all sorts of wonders ny gently crooked hands, taking precious time.  She spoke slowly and deliberately, her speech difficult to understand by an illness that slowly robbed her body of her former self.

Throughout the years, two more of my father’s sisters were diagnosed with the same chronic condition, a rare illness named Friedreich’s Ataxia.  It is progressive and has no cure.

The odds of my grandparents meeting, marrying, and passing the gene to their children were 1 in 10,000.  My grandfather’s ancestor’s were from Scotland; my grandmother’s from Sweden.   Somehow, someway, hundreds of years later they found each other here in America, where they fell in love.

My grandmother gave birth to nine children.  One son was stillborn and another boy child  lived only a few short months.  Seven survived, my father being the only son.  The odds of their children developing Friedreich’s Ataxia were 1 in 3.  Of nine children, three were eventually diagnosed with the condition and lived the rest of their lives with it.  The numbers were exactly right.

Thankfully, my grandparents never knew about genes or passing on rare diseases.  Still, I often think of my grandmother, and of the silent pain she must have endured watching her three beautiful daughters live with their conditions.  She never hinted at their struggles, never talked of such.  She was one of the strongest women I ever knew.  She had a tremendous faith in God, loved to bake Swedish rye bread, and tend to her colorful flower garden in the spring.

Before my husband and I ever ‘got pregnant’ we went to Henry Ford Hospital in Detroit, Michigan, for genetic testing.  We carried scribbled notes written by my “Aunt Mimi,” who had gone through numerous testing in hopes of helping others.  The chances of us having a child developing  Friedreich’s Ataxia, were 1 in 1,000.  Ironically, no other chronic illnesses were mentioned by the geneticist who met with us. It wouldn’t have mattered, we wanted to have our baby.

Although they will never know it, my Special Aunts were my first heroes.  They set the stage for what I was to draw on later in life.  Strength, courage, and empathy for others.  Although I am not perfect, my aunts taught early on to accept what cannot be changed.  Through words never spoken I saw how to  live life in spite of adversity.  To live today with hope  for tomorrow.

Immigrants just arrived from Foreign Countries...

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