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Life as a parent of a disabled child is a constant journey

August 14, 1998|By Jo Ellen Barnhart

Nearly everyone who knows me says, "You must write about your experience of being a mother of children with disabilities."

But it's not that simple. Even as I sit here now in front of the computer, emotions flood my mind and body. My hands quiver and my brain panics searching for the precise words to help communicate the enormity of it all.

And yet, for some reason, I want you to know what it's like to have a child with a disability. Perhaps if you get a glimpse of what a disabled child means to a family, you can show respect and admiration toward a special needs family rather than pity and disregard. Or better yet, it may serve as an invitation to a profound, uplifting journey. A journey that is only led by a special child.

The discovery that a child has a disability is usually not our first encounter with grief and anger. But the magnitude of this experience is beyond any prior adventure. It feels as if our emotions rested comfortably on an unassuming lake taking on an occasional rift.

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Now we are thrust into the ocean. Never have we felt such torrential storms of anger. The enormous waves of grief we find ourselves hurled upon are exhausting and overwhelming.

Terrifying as it may be, our only defense is to learn to navigate the torrent of these emotional seas. By respecting and understanding our emotions, we build a craft on which we can sail.

Our entire lives are molded into a new form. At all points with the outside world we are stretched and tugged.

The way our friends and family relate to us changes. Our interaction with the barrage of medical and social professionals challenges us. Careers become interrupted, redirected or even terminated.

Our very identity comes under assault. Our core values and beliefs are publicly examined.

Parent advocate and author Barbara Gill wrote, "Our lives are lived in a dollhouse where one wall is missing and our family is always on view."

We continually question ourselves, wondering how we take up the tasks now required of us. But we do. After all, we have a child to care for. An activity that absorbs us.

But having a child with a disability does not give instant meaning to our lives. The opportunity to share the life of someone who has Down syndrome or muscular dystrophy presents a doorway to meaning.

So many people search endlessly for life's meaning - resisting obvious opportunities.

In "Flying Without Wings," Arnold Beisser wrote, "In order to see the opportunities, though, you must accept what happened as if you have chosen it."

Sooner or later we discover we own a determination that fuels a resilient will to defend, provide, and protect.

We possess an ever watchful tiger eye that can lure and frighten. We hear, see and feel things that others cannot. We sense that others are cautious of us. They feel our strength and some fear it for we have something they do not.

Eventually, we come to a new place. A place where our hearts are opened to love.

We have a new way of seeing God and humanity. We have lived and learned from the greatest human paradox.

Through pain, failure, weakness and disappointment, we gain strength, growth, power and joy.

Jo Ellen Barnhart is the working mother of three young boys. She teaches at Frostburg State University and Hagerstown Community College and consults in public relations and marketing. Write to her in care of The Herald-Mail Co., P.O.Box 439, Hagerstown, Md. 21741.

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