My Son, Peace Be Unto Thy Soul

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(This is an excerpt from the book I Sit All Amazed.)

Just as with every story, this story has a beginning. In the beginning, during her pregnancy with me, my mother, Mildred, experienced no warning signs or any clue that anything was different or wrong. Everything went smoothly. There was no hint that abnormality was on the horizon.

. . . [At 18 months old, i]t was becoming transparent and painfully obvious: my inability to stand or walk was not an issue of would not, but rather could not. There was no lack of desire, only a lack of strength. Mother’s mental health and anxiety had absolutely nothing to do with my growing incapacity.

But there were more questions than answers, and Mother and Dad needed some verification that I truly was different. They needed information. How long would I have this disorder? Would I ever walk? Was death looming over me? Would I ever reach adulthood? Would I live independently? Would I marry and father children? There were so many questions and no one had the ability to give my parents any peace of mind or concrete explanation for why this was happening or what the future would hold.

Days of hoping turned into weeks of frustration. My condition was not improving. I was not developing, and I was not showing any signs that I was simply a slow walker. Finally, three months after the initial diagnosis, Mother and Dad could not wait any longer. They were no longer willing to live with the uncertainty that shrouded their future and mine. They needed answers. Without knowing why I could not walk there was no way they could go on. It was time to seek a second opinion.

But at eighteen months, I remained a medical anomaly. There were no easy answers or explanations, and every physician they consulted was baffled by my advancing disability. There was no textbook definition about why I simply could not sustain my own weight, independent of someone holding my hands. Finally, my father contacted the National Institutes of Health in Bethesda, Maryland. He had confidence that surely this revered and highly respected center of medical research would be able to unlock the mystery of my unresponsive body. The appointment was made, and we boarded the train in Ohio and set off for a trip that held more peril than promise.

I was approximately eighteen months old when I was diagnosed with Werdnig-Hoffman’s Disease.

For three days, I was subjected to a battery of strength and sensitivity tests. I failed the strength tests—all of them. However, I was not paralyzed; I could feel the needles the doctors inserted into my legs and feet.

I, of course, have no memory of that time, but from what my parents have told me, it must have been quite an ordeal. My parents had to step out of the room as men in white coats surrounded me and subjected me to the tests. I must have wished that my parents could have told these men to stop hurting me. Instead, they were scurried out of the room each time a new platoon of men walked in with their stoic facial expressions and the cold, primitive-looking tools that were used to probe and prick my body.

And then, at the end of those three days, there was a verdict. It was as unanimous and certain as it was devastating. This intimidating jury in white declared unequivocally that I had a neuromuscular disease; it even had a name: Werdnig-Hoffman’s Disease. It was difficult to pronounce and even more difficult to comprehend. Furthermore, it was both incurable and fatal. It would almost certainly kill me before my second birthday! And there it was in all its awful horror—the truth.

I had no strength.

I had no future.

I had no cure.

I had no hope.

I had no treatment.

I was dying.

My parents were informed that I had only weeks left to live. Perhaps, if I were fortunate, a couple of months. That is not an optimistic prognosis for anyone, especially for an eighteen-month-old little boy who they only wished to take home where he could play with his brother, Billy. I didn’t know why my parents were so sad. I just knew that they were.

We had traveled far from home with the glimmer of hope that I had been misdiagnosed or that somehow my body’s downward spiral could be reversed. But instead, all hope was dashed and replaced with terror, devastation, and grief.

My parents had sought for a medical refuge and were met instead with a medical abyss. Death loomed over me and over them. They had been delivered the horrifying news that their son was dying and no one or nothing would be able to prevent it. They had exhausted all avenues of rescue and hope. They had only two assignments left to fulfill: they needed to prepare for the birth of their fourth child, and, at the same time, they needed to prepare for the death and funeral of their third.

But then, miraculously, the darkness that permeated their lives and mine began to disappear. Light penetrated our home, and somehow, some way, hope was restored.

Mother and Dad observed that my condition was not deteriorating at the rapid pace predicted by the physicians back in Maryland. I was not getting any stronger, but neither was I getting any weaker. Inexplicably, I seemed to have reached a state of equilibrium. It was as if I had obtained some sort of physical reprieve—a stay of execution. I was neither sad nor in pain.

I was happy.

I was healthy.

I was alive.

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