I published this June 28, 2011. Some things remain the same.
My son is not normal. Far from it. As a matter of fact he is so far from normal that there are few words which can describe him. Nevertheless I try. I want to find the words which can describe such an odd existence of twitches of muscle that build to crescendo and crash like the waves breaking on the shore. And the quiet after the storm of each major seizure. The endless surge of hundreds of thousands of seizures.
The words that I seek are words he will never understand and never be able to utter. But I am perversely content with him being like that because I am a bit of a coward. What if he could speak and tell me how much he is suffering? How much he hates his existence?
Instead he smiles. Or screams. And he struggles on while I scamper to find words that can do justice to the effort of keeping him comfortable. Walking through the labyrinth like a blind man, certain senses acute but still without the ability to see all that he wants or understands.
And you can understand my need to see those things, can't you? I had to make a choice. As to what kind of father I was going to be. I wish I could say that I am precariously living out part of his life by proxy, but more truthfully, withholding from myself certain luxuries such as companionship because I don't feel capable of fulfilling so many roles; father, husband, caregiver, healer.
When you are broken down to basic elements, finding that smooth circulation of normalcy can be elusive.
It is a relentless storm, this compromise he has struck with God. On the one hand giving him so much physical strength that he can endure catastrophic amounts of pain and ill health, and heaping on him such a severe form of living that only his strength can allow him to endure and at the ebb of strife and conflict, smile. Breathing, not easily, with difficulty, not understanding as I do, but not being less for it.
I know that what he is missing are the perceptions that we all take for granted. I know the greatness of both his suffering and his happiness, both of them extremes. I can feel on myself the wear and tear and I feel on his body the changes, the wear and the tear.
But the days have added themselves, just as the myriad convulsions, and they have gone before, leading to this day, today. And the next day.
I do count the days because I marvel at what has gone before. I don't discount it, throw it away. It is what has made today. Everything has led to today. Today is the day I pay attention, I strive to understand, I exert every effort to maintain what has allowed us to reach this day. Yesterday was no different, tomorrow will be the same.
While words cannot do justice to the effort of maintaining a clear airway, relieving a neck in spasm, a compressed nerve in his back, a storm brewing in his brain, a painful dislocation or his truncated bowels, it isn't necessarily even a way to make sense of it all. But in the recounting it does make the time pass