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"Marked by Waardenberg, The Bobby Project"

Most of you know me as an artist, a teacher, a mentor, as a lifelong advocator for the deaf, and today I want to begin showing a part of my life that is very special to me. This is my story about the rare disorders of Waardenberg Syndrome, as well as Parkinson's, a fight for humanity, and ultimately becoming stifled, all while living in a raging COVID firestorm.

It is the early 1950's- let's begin with Bobby.

"Ba Ba" my brother couldn't say Barbara, he called me "Ba Ba".

He was four years older than me, born with one blue and one brown eye, and a visible birthmark with a white forelock in front of his forehead, and that's how he said it.

As his younger sister, I was the manageable one, placid and calm, not too demanding for my mother.

That day I was in the playpen quietly playing with my toy- a red, blue and yellow Rollie Pollie Clown-

comforted by the noises rustling around me; the window open and the cotton crisscross curtains gently blowing out from the breeze.

In the kitchen I could hear the clanging, my mother washing heavy metal pots and stacking them one on top of the other. The noise didn't seem to distract my brother, rolling his metal toys, a police car and a little school bus, back and forth across the window sill, back and forth, until the tiny rubber tires fell off, exposing the metal polls that scraped the paint off the ledge as he played.

Just then, in a split second, there was silence.

It came so swiftly it startled me, and I began to cry.

The neighbors came rushing into the living room as I searched for my mother or brother's face, but they weren't there.

I could hear my mother's voice outside, calling for my brother.

She called for him over and over, panicked, though she knew- she knew she was desperate for him to hear her but what else could she do?

He wasn't hiding in the bushes under the window. She didn't hear him by his Pedal Car pretending to make the Vroom sound of a school bus. He wasn't in the house.

"OH MY GOD, he was just inside, someone please help," she shouted frantically, "please, anyone," now whimpering, "my son, my little boy. Help, help, I'll never find him." Tears were rolling down her cheeks as they have so many times before, that familiar feeling of hopelessness grew when she finally accepted that he was profoundly Deaf.


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