Original article was published on, March 20, 2014

I used to think of my son Alphonse’s labors to fit in the world around him as a “Sisyphean” task, that is, until I sisyphus copyremembered that in mythology, Sisyphus was a deceitful, conniving king who was forever doomed to roll his massive stone up a steep hill, only to have it roll back down again. The difference is Sisyphus had it coming to him in his eternal life, and Alphonse does not.

When I see my son struggle to learn or master a skill, say, something as simple as just wiping his hands, it brings me back to the early days of his diagnosis, when everything he did was a source of sadness and guilt. And this sadness also fills me with a momentary anger, one borne of frustration and helplessness, for despite all the years we’ve poured into making his life “normal,” sometimes, there are things we cannot ever claim to have control of. Alphonse’s life is one of them.

While other children have proms, graduations, and moving-up ceremonies, while young men and women Alphonse’s age worry about college and relationships, we seem to be stuck in this twilight zone where Alphonse and many other young people with similar abilities and dis-abilities hover in. For us, there will be no graduations. There will be no moving up or moving on. We can only live for today, for today is all we are really sure of.

So we strive to make each day work. We wake up, we put on a happy face, we resolve to keep busy with meaningful tasks to fill a day. We get down on our knees to pray, and yes, to play.  We move, we dance, we sing, we pound on the table when lunch is late, we laugh, we cry. And we count the seconds- one thousand one, one thousand two, one thousand three, one thousand four—until the day comes to an end and we can focus on, well, another “today.”

Still, if there’s anything I’ve learned from my son, it is the courage and the strength of the human spirit, the very same one that exists in all of us, disabled or not. It’s a spirit that cannot be shackled into labels. It is one that breaks free his desire to connect and be connected to others. Despite the belief that Alphonse exists in “a world of their own,” the truth is, he wants to be part of our lives. I see that every single day. The way he tries to catch our eyes when he does something he is particularly proud of. The way he giggles when we praise him. The way he engulfs us in huge bear hugs when he is happy or when we are sad. Over the last few months, we’ve seen our son blossom into a happy, helpful young man, one who is always proud of his work, however menial or lowly some may consider it to be. He tries very, very hard.

Alphonse at work2Work is a Blessing

It’s not easy; I see that too in my son’s struggles to communicate and be understood.  We take language and speech for granted, when these are some of the hardest things to learn in the world. There are many mistakes along the way, and just as each step in the right direction feels like a triple-crown victory, each mistake feels like a miserable failure. So, yes, perhaps Alphonse’s life is indeed Sisyphean, with him rolling a boulder up the mountain of his disabilities, only to have it come crashing down on him. It is to his credit that he throws himself into it completely and pushes back up again.

There are days, however few and far-in-between, when the boulder stays on top for a few seconds, these are the times we dare dream of beyond today.  True, there will be no moving up, no graduations, not even proms. But what we have are constant beginnings when each day, with all its mistakes and sadness, can be wiped away clean and began anew. Surely there is magic in that too.


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