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    This Exit, No Return

    A Reader’s Theatre, By Joy Cowdery

    These are authentic thoughts from parents who have children with disabilities. They have given permission to use their words to tell their stories. I am grateful for their generosity in sharing with us what they want the world to know about their children.

    Cast: Susan, Dee, Jim, Beth Ann, Jill, Karen

    Dee: Look around. Look at us. Like all parents, we’re here for our kids. But in our world it is sometimes a world of dreams delayed, put on hold or tucked neatly into a metaphorical hope chest. Someday, it won’t be painful to go into that chest. To sort through the “what could have beens” and the rites of passage that never come for our children. Or at least never come in the expected way. It is best not to think of dance recitals, proms, full, flowing wedding gowns, grandchildren. Not now. We’re exhausted thinking about the next prevention. Preventing hurt, preventing harm, preventing chaos.
    Sometimes, I cry.

    Beth Ann: Sometimes I cry, but, not often. Often there are no tears, just life. Shock, sadness, then life and joy.

    Susan: Sometimes I laugh. Sometimes, I brag. It has made me a stronger person and more patient mother. I feel empowered when I see my child doing new things I thought she would never be able to do.

    Dee: When I was traveling down the West Virginia Turnpike, I saw the sign “This exit, no return.” I had to smile. I am on that exit now. As I wind down this unknown road I can choose to panic and desperately seek my way back to the freeway, or I can enjoy the view as travel to find a new path.

    Jim: The beginning? Wow... that’s always the hardest.
    Before entering the NICU, we had to scrub and gown from head to foot. I felt like we were entering into a contaminated area. The nurse led us to Aaron’s glass-walled crib. He was so tiny and frail with respirator tubes and IV lines running from a row of syringes. They were infusing fluid into his transparent body. He had a feeding tube, a heater, monitors constantly beeping, and an oxygen saturation light. They told me his total blood volume was only 5 tablespoons. I spoke his name and at the sound of my voice his eyebrows drew together. “It’s Daddy,” I said, and burst into tears.

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