Excerpts from Touchstone: A Life Unseen

 

This was the year of the diagnosis, when my “formal” medical and educational training began. This was the year my life diverted from its previously joyous, typical path and I found myself in an unfamiliar and dangerous landscape. It was the year I learned about the power of friendship and how easily it could be derailed by disability. I learned about the empty comfort of platitudes. I learned about the ability of people, even family members, to deny the intractable reality of illness or simply avoid the person and topic altogether. Most of all, though, this was the year that I saw clearly, and heard above the din of my new life, the slamming of doors down the long corridor of my daughter’s future.”

from Chapter 1, “The Year of the Diagnosis”

 

Emma had been exiled from the normal world with her diagnosis, just as Greg and I had been exiled from the normal world of parenting. Now, with the additional complications of his diabetes, we felt as though we had been rejected not just once, but twice. On the second day of our travel, though, as I drove east and the sun broke over the mountains in western Maryland, I felt my spirits rise. The road stretched out before me, a thin, gray ribbon gleaming in the sunlight. We were going to a new job in a new city. We were moving into a home in which no one had ever lived before us. Maybe, just maybe, we had left normal and were heading for something better.”

from Chapter 2, “Leaving Normal”

 

The changes that Emma was stirring in our lives were becoming more real and taking shape, although we still had no idea what we were doing or where we were going. We knew now that there were other families out there like us who were searching for information and support. In the absence of practical and everyday information about Aicardi syndrome from medical professionals and journals, it seemed to us that the best way to learn more about Emma—and the syndrome—was to network with other parents. A small seed of hope was sown that afternoon: to find and connect with other Aicardi families. We were still living on that small island, but at least we knew for sure that we were not living there alone.”

from Chapter 3, “Finding Family”

 

While most parents readily acknowledge the angst of dealing with their child’s first venture into the educational system, the process for parents of children with disabilities is more intense. When your child has daily seizures, will never have expressive language, and is still in diapers, registering your special-needs child for the start of school can bring on a level of parental anxiety that may require immediate and repeated use of the breathe-into-a-brown-paper-bag hyperventilation therapy.”

from Chapter 7, “Learning Curve”

 

There are moments that stay with us forever, unheralded snapshots in time that startle us with their force and potency. Moments in which we discover we are standing outside of ourselves, with a perspective not wholly our own. This was one of them for me: with the exception of my daughter, every child in the room was in a wheelchair. The recognition of it, the startling realization that this is what school for her would always look like, nearly buckled my knees. Loving your child, knowing and accepting that she has a disability, is a vastly different experience than seeing her with other students in a special-education classroom. Standing in the hallway, looking through the window, I saw the classroom and in that same instant, my daughter, through a stranger’s eyes: she was just one more kid with a disability in a room full of kids with disabilities.”

from Chapter 7, “Learning Curve”

 

Emma didn’t look like a pioneer, but that’s exactly what she was in the late 1980s and early 1990s in a small town in Ohio. She broke down unquestioned barriers that had acquired strength and an untenable resistance to change through the quiet passing of many years. It was a physically painful process for her and an emotionally painful process for me. Neither one of us came through it unscathed. Did she open hearts and minds as she passed through those barriers? I’d like to think so.”

from Chapter 7, “Learning Curve”