September 15, 2010


For a number of years I lived with the feeling that there was no magic in the world. Definitely it was a feeling and not an understanding. I did not think or realize there was not really any magic in the world, I felt that the magic had somehow disappeared from me. There was nothing special anymore, nothing unique. 
Fatigue, from years of grinding slavery to the mill of my son's health, is how I explained it to myself. Yet Segev has certainly always been my alternate reality. No matter what happened or how I saw the world, with uncertainty, I knew that at least there was always one singular purpose that could not be questioned: my son. 

When I was six years old I was upset about something one afternoon but it was actually an accumulation of things that bothered me. I thought about all the sad things that I heard about, people dying or being ill, arguing. So I decided that I would become God. I wasn't certain how I would accomplish this but at that moment I knew that to be the only solution since God was omnipotent and then I would be able to correct all of these wrongs. 
Thinking a little more I realized though that if I could think up this idea of becoming God then any person could, especially people older than me, who were necessarily smarter than me. I didn't feel the need to question any further the logic of my thoughts at the time, I didn't try to argue with myself that perhaps there was some kind of system in place on how to become God, or a line you had to wait in or that God would have anything to say about it. Nevertheless my conclusion stood firm that God was now out of the question so instead I would become a writer. 
Yes, at age six I decided I would become a writer, owing to the infallible logic that at least there, in the stories I wrote, I would be God. Deciding what would happen but more specifically, I thought of how I could rewrite the stories of people's lives giving them a happy ending. I remember feeling a little sad at this compromise since I understood the story wouldn't be real but feeling that this would just have to do.

That week I drew a four page comic book, complete with balloon text, about a Frankenstein-like monster made in a laboratory. I showed my father and told him I wanted to sell the comic books so that I could slowly become well known as a writer. He had about a dozen copies made up at his office and I remember the strange smell of the paper, so white and stiff and to me it seemed as though we must be special to have access to this technology to make photocopies. I felt so elated with this new connection I had to the world of grownups, to possess photocopies of my comic book, that I went from door to door asking people if they wanted to buy one for ten cents, which was as much as a real comic book cost back then. I don't remember how many I sold but I do remember that I was a little dejected when some people said no, they weren't interested.

As I would ponder that incident at different stages in my life, what struck me was not the strange and fantastic idea of wanting to become God at age six, even then realizing that it probably wouldn't be an instantaneous transformation, but rather that it seemed to me to be in the realm of the possible.  Of course you might think that a small child believes all kinds of things; Santa Claus, magic, flying carpets in Arabia. Most assuredly as a child you unconsciously look to see those fantastic things in your daily life. That elated feeling of imagining to fly, for example, is an integral part of childhood, allowing exuberant life energy that is bubbling inside, carrying you along your physical growth, to find an outlet. Even grabbing hold of a rope and swinging from the branch of a tree and feeling, if only for a second, that you actually are flying. Magical moments.

Later these things fade. Or not. People say they see UFO's. The mind can play tricks on us, people here reading, parents of disabled children know all about that. Everyday sounds start to mimic ones your child makes. You pass by a room and see his face in the shadows even though he is somewhere else. You wake up at night startled but he is sleeping soundly. So we know our fatigued bodies can cause our minds to distort reality. But magic sometimes creeps back in, whether you want it to or not though some, opposed to the very concept of "magic" will say, it's all in your head.

One evening Segev couldn't get to sleep. Thankfully he had come out of his regular sleeping pattern which had for over a year been to fall asleep at eight thirty in the evening and then wake up at twelve thirty at night and then to begin his day. Back then he would never sleep more than five hours consecutively (today you can't let him  because his bronchii become obstructed). 
But this particular evening he was restless, twitching, moaning. I treated his stomach with vibration, held him until he fell asleep but as soon as I put him down he would be twitching again. For a moment it reminded me of when my two other children were babies, that is to say, for a moment I felt as if Segev was a normal baby, though already seven years old. 

Unfortunately I was exhausted already from the night and day previous and the night before that. I no longer do three nights in a row alone with Segev but back then that was the norm, after all, I was superman was I not? Close to two hours went on like this, putting him back in his bed, taking him out; I could barely focus my eyes anymore. I decided I would put him next to me in my bed and wait until he fell deep asleep and then move him back. Of course I couldn't let him sleep there next to me because his respiratory sensor was under the mattress in his bed and besides I have been known to kick and elbow people in my sleep, fighting adversity not only in the daytime, you see.

I woke feeling disorientated, unable to gain focus and seeing the room spin. I had a strong sense that something wasn't right but my mind seemed completely unable to put any train of thought into motion. I remember that I could not hear Segev's breathing. I have woken many times in a start, jumping up to see that Segev lay in his bed frozen in seizure, not breathing temporarily, but never panicked by his temporary apnea. Consciously, as I lay there those two seconds after opening my eyes, not turning my head yet, I did not remember that Segev was next to me but nevertheless, still lying on my back, my hand shot out instinctively and I began to perform compressions on his chest. As I turned to look at him I could see his limp body, with no reaction to my rhythmic pressing. If any of you have a child who has, like Segev, a minimum of one hundred seizures a day, then you know the best way to insight such a seizure is to jostle your child when sleeping. 
But Segev didn't react at all, he just lay there limp. I didn't even try to better my postion as I realized fully for the first time exactly what it was that I was doing. Then Segev seemed to suddenly rise up and double in size as he his chest filled noisily with air. He stayed lying there breathing quietly and I too finally let go of the breath I had been holding in, dropping back to the mattress with literally a sigh of relief.

part two...

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