Chaos & Clarity

Once upon a time, there was a family of four – a mother, a father, and two children.  The oldest child had exceeded childhood milestones in many ways.  She was also a quiet, well-behaved child.  But the younger child, Sarah, was very different.  She appeared to be ‘delayed.’  She started to crawl when she should be walking.  When she did learn to walk, she would fall every few steps, often bumping her head.  Sarah tried to communicate, but the few words she knew weren’t the ones she needed, and hardly anyone understood them.  Sarah ‘acted out’ – a lot.  Her family and her teachers became weary.  Frustrated, they would say, “Sarah! You’re not listening to me.”

Sometimes, at dinner, Sarah would throw tantrums.  Her family played the ‘process of elimination game’ for five frustrating minutes until they had pointed to every possible ‘want.’  At bedtime, Sarah would cry and point and finally, throw herself down, worn out and still unable to communicate.  Sarah’s mother would cry sometimes too.

Sarah’s loving parents had her evaluated by every specialist they could find.  Explanations were tossed around, each skewed to the specialist’s profession, and none skewed toward Sarah’s benefit.  In a single year, Sarah had hundreds of appointments, assessments and interventions.  All were inconclusive.  “Where is your voice hiding?” the family wondered.

Finally, at the age of four, Sarah met the person who would change her life – the doctor who discovered that Sarah was deaf, almost.  Sarah was ‘fast-tracked’ through the medical system given her late diagnosis of Enlarged Vestibular Aqueduct Syndrome (EVA) – an unstable, inoperable condition.  Any bumps to the head could render Sarah completely deaf.

Sarah’s parents were told that she should never participate in contact sports.  No kickball games, no monkey bars at recess, no…fun?  Pass the bubble wrap, please.  And the tissues.  Family and friends cried big, ugly tears for this beautiful little girl.  For the difficulties she would endure, and for the frustrations already spent and still to come.

One day, not long after Sarah got her very first hearing aids, the tears changed shape.  When Sarah walked outside, she stopped at the top step, wide-eyed and incredulous at the sounds she was hearing.  She jumped – startled by a crow.  “What’s that?” she asked.  She had never heard a bird before.  When Sarah went to bed, instead of crying, she was able to communicate her fears.  “I need the light.  I’m scared.”  And she lay down peacefully, hearing the comforting words of her parents. Sarah doesn’t act out like she used to.  She stills herself so she can read lips and enunciate the words she is learning.  And she sings. She sings!

Sarah and her family are preparing for the future.  They are learning sign language.  They are gathering resources and information.  And they are basking in the sound of each other’s voices.

One day, in mock posturing, Sarah said to her family, “You’re. Not. LISTENING!”  The same words that had been mistakenly directed at her for years.  With regret for their ignorance, they stopped what they were doing and faced the beautiful little girl with the hearing aids.  “Tell us, Sarah.  What do you want us to hear?”  To which she said nothing.  She stared at them in silence, content that finally, people could hear her.  And she could hear them.

“All the sounds of the earth are like music.”  – Oscar Hammerstein

Listen well.

Excerpted from an article by Donna R., Sarah’s mother, and my sister