Thursday, September 30, 2010

Follow the leader

Follow the leader
By David Sexton

When my son was first diagnosed with cerebral palsy, and we had an MRI performed and learned the scope of the stroke, I had a hard time concentrating on what the doctor was telling us. I sat in his office holding my wife’s hand and balancing my son on my knee and I tried to focus. My head was a whirlwind though, and it was all I could do not to shut down and stop listening.

“You’ve got to listen and ask, you’ve got to listen and ask,” I kept saying to myself. “For your son, you’ve got to listen and stay cogent.”

I willed myself to attention and watched the doctor’s face the way I sometimes scan the face of an attendant on an airline flight when there’s turbulence; I looked for the signs of trouble that words might not convey.

While I listened, in that hour or so that the neurologist gave us, I heard him say three distinct things:

“This is permanent. This is not degenerative. We don’t know what the long-term impact will be.”

When I heard “...not degenerative,” I think I calmed a little, like I had caught the side of a boat after heavy swimming. I clung to that understanding. I was relieved that, whatever it was that had happened to my son, it was over. Later tests and blood work reinforced this understanding. There was no underlying condition that could make a second stroke likely; there were no accompanying conditions that would make his prognosis worse.

I took great comfort from those words and we set about doing everything we could to assist my son to recover physically.

I suppose at the time, my unequal weighing of the doctor’s message created a set of incompatible beliefs in my head. I somehow felt that the “not degenerative” part of the doctor’s message negated the “permanent” part. That his words would act like self-cancelling components to an algebraic equation. And like I often did in math class in high school, I ignored the “we don’t know” part of the equation all together. It didn’t seem to fit and I wasn’t ready for that.

I suspect this self deception was natural; I needed a way to move ahead and those tougher truths were too much for me at that moment. I was living as one of my literary heroes, Dr. Samuel Johnson, would say, not from day to day, but from hope to hope.

“I can help him now,” I thought. “I couldn’t prevent what happened to him, but now I can make it right.”

To a great degree that misconception has been helpful. The hope that it gave helped me to take a practical approach to my son’s conditions and treatment. We worked (and still work) very hard to make every therapy appointment count and to help him recover.

My son can walk now. He can talk. He can move his left arm, the affected arm, when he thinks about it. These changes mark real progress, and the smiles and confidence I see in his face tell me just how important this progress is. When I see him walk and climb and use the slide at the park, I might as well be watching him fly.

But even as my son has made these strides forward, it’s becoming more clear that when nature touched him with cerebral palsy, it left a mark that would always be a part of him.

“This is permanent. We don’t know what the true impact will be.” These words have come back to me as the immediate dangers have passed, and I’ve only begun to wonder about them.

I think I’ve put off thinking about these words, not only because they were hard to hear, but because they brought home the mystery that the future holds for our son. That no matter how much therapy we do, no matter how much coaching and early education we give him, or how much we include him with his age group in school, my boy is on a different and unknowable path. That as much as I like to feel that I’m clearing the way for him, all I can really do is follow behind him.

Sometimes I find myself doing this following literally.

“Uh oh, Daddy, he’s on the stairs,” my daughter will giggle when her brother breaks past the barricade we put in front of our first to second floor stair case. “There he goes!”

“No way!” I shout from behind as I race to catch up to him – he’s moving pretty quick these days – and prevent an unplanned stumble. “Get back here little man!”

He laughs when I catch him. He looks up at me with a twinkle in his mischievous blue eyes and lets out a terrific little belly laugh.

“No way,” he repeats with delight.

I look in those blue eyes and wonder how different things are for him. I think about the half of his brain that was hit by the stroke and the half that is now free to work as it will. I listen to the numbers and letters he identifies spontaneously from road signs and cereal boxes and wonder what’s in store for him and for us. I think about the songs and stories he’s beginning to memorize and wonder what he will do with his life.

Some of this is ordinary wondering about the future, I know. We all have our riddles, I suppose; the traits and qualities that surface in us seemingly from nowhere. My children will sometimes exhibit a look or a laugh or a peculiar talent or weakness that seems new and inexplicable. When I see this, I imagine lost ancestors before us in the forgotten past whose once familiar qualities are resurfacing. I think these seemingly new qualities are like a flower bulb that has lain dormant in a garden for many years, only to spring up unexpectedly to the owners of a home who never recall having planted it.

But when I think of the doctor’s words, “We don’t know what this will mean,” I know some of what I see in my son can’t be attributed to a distant forefather or mother. Some of these traits that surface now are part of his body’s response to the stroke. His brain forced into use pathways and circuits that would otherwise have remained dormant. The resulting changes and growth of his person are ancient beyond the reach of family memory or even written history; they are the inheritance of ages of human evolution that have made our bodies tough and robust and resilient - even to stroke. I wonder what miraculous traits of humanity are now coming alive in our boy and what they will mean for him.

There is no way to know for sure, but it puzzles me mightily now.

These days, when I find myself trying to riddle these unknowns out, I feel as though I’ve taken up a difficult book that has suddenly become intelligible. That my mind and heart have grown with our struggles and that I am now ready to acknowledge certain truths about the cerebral palsy that I was not ready to accept before. I feel as though we’re out of danger and like a man will sometimes do after a hurricane, I’ve tentatively stepped out and am looking around to see what the great winds and rains have changed in their passing.

I’ve been afraid I think, and the fear is just beginning to pass. I never thought the words “permanent,” or “we don’t know,” would mean anything else but a fearful burden, but this seems to be changing.

“What a mess!” my son says, imitating me again, as he overturns a bucket of toys on the floor in front of him and sets about ordering those same toys into some arrangement of his own imagination.

I watch him play and I can do nothing but smile.

“He’ll make his way,” I think hopefully. “He’ll find a way.”

I’m not ignoring the realities. I know that way won’t be easy. I know he’ll have unexpected struggles ahead and that the world can be a hard place. We still have a long way to go with his therapy. We still have a long way to go to see what help he may need along the way. There will be many tough days I’m sure.

But when I look at my son now and accept both his progress and the ongoing mystery of his condition, I see mostly good in his future; I see his unique and remarkable potential. Whatever the future may hold for him, I expect that he will be able to face it with confidence. What I see mostly now, for my son, is hope.

David is a software development manager in Hoboken, New Jersey who writes about parenting in Scattering Bright. You can read an earlier piece he wrote for BLOOM at Breaking windows with my son. Pictured above is his adorable boy.


Thank you David! It's fascinating to me how our minds interpret information in a way that enables us to cope in the present. But also how our way of looking at things expands and changes over time -- so that you are able to see the positives/mystery/gift of qualities in your son that may emerge as a direct result of how his brain responded to the stroke.

A couple of people have told me they are having trouble posting comments. If this is the case, please e-mail me at and I'll post for you.

Thanks again!

Hi David,

Regardless of my Cerebral Palsy, I try to live my life in the following way: "I do what it takes to live life to its fullest, even if this means going off the beaten path. And, above all, 'I never surrender!'"

May your son lead now and forever,

Sincerely yours,

Matt Kamaratakis

I enjoyed both this and Breaking Windows with my Son immensely, will be reading more from Scattering Bright for sure.

Thank you, Louise, for bringing David back! "how our minds interpret information in a way that enables us to cope in the present" - seems that is how the mind of David's son must work also.

Truly inspired writing, David. Thank you.

Thank you everyone for the kind and inspiring words.

Thank you Louise for giving us a place on Bloom.

Thank you Matt for your encouragement - when my boy is old enough to read, I will show him what you said here.


I think your journey is very real. You have given us a gift in sharing your story. You seem to have an open heart and I like the way you have "accepted the mystery of your son's future".
He will grow with confidence in your acceptance and in your celebration of who he is. Thank you.