June 28, 2011

As time goes by

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 more pleasantly.


  1. I am glad that you get a bit of relief in the recounting of it all. I am glad, too, that your son has you on this life journey, a bright spot for him as for you,I'm certain.

  2. Been thinking of you. ((()))

    I like the new look of the blog.

  3. I am sure that Segev understands your words and thoughts...there is a very deep bond and communication between a father like yourself and a son who chooses a father-partner in his journey. There is a constant flow of positive, energetic communication...this sustains life. Warmth and blessings...

  4. Hi eric, i.m with your mother just now and reading together, your blog.
    I think you are are a wonderful dad! And your mother ingested in you all the loving that your son needs.

    take care!
    your mother's buddy

  5. Evening, I am sorry that I have found you on my journey and search for participants for my project - sorry for your gorgeous child and for what life holds for him and sorry you have to endure the pain a parent does when they watch their child in pain - be it physical or mental pain - we feel it too. Please take a look at my blog - it tells all about a book I'm trying to put together. I am trying to gather a compilation of stories from Mums and Dads that have at some point received the news that there is something wrong with their child. In the hope that, with stories of honest reactions we may help others that hear this news feel a little less alone, to feel that no matter how they react, or feel it is okay and normal and there is a light if they can only find it. In advance, I thank you for looking at my blog and please feel very free to share it around. Thanks, Trine http://alittlelessalone.blogspot.com

  6. Dear Eric,

    I hope that you and Segev are both ok, just thinking of you. Sending you a special hug,