September 13, 2010


Silence is my enemy where Segev is concerned. Quiet doesn't mean everything is working: I have to hear a rasping of his inhalation, the rhythmic knocking of his hand as he seizes, sputters.  As luck would have I happened to be close by the rehabilitation centre that time, though I can't recall the actual driving.

The nurse looked fairly calm by the time I got there, much more I'm certain  than when she was called to Segev, as I was told he had already turned blue. She began resuscitation protocol and someone attached the probe to his finger. It read 50% oxygen.

But Segev came back that day.  I tried to show no emotion as I examined him, asking questions and then picked Segev up, carrying him to the car. I felt no relief, having passed through similar drama on several occasions.

I wish I had though. I wish I had smiled the concern off of my brow and hugged the nurse and laughed aloud, letting the air into my lungs as though I had held my breath under water. But I didn't because I was overly concerned with the details of their treatment of Segev, trying to determine if proper protocol had been followed; was it luck that Segev came back or because of their intervention?

Finally, after a few hours of intensive treatment of Segev, or after finally that the pain relented or the cluster of seizures receded I would leave Segev on the couch, both of us wrung dry, to rest quietly, perhaps watching him from the dining area where I was able to finally sit for a meal with my other two children . Picking  Segev up when he is sleeping has always been a consistent way to cause him to have a large seizure but I felt Shoval and Noa were becoming accustomed to this state of affairs wherein after Segev's immediate needs had been met and he just lay there quietly becoming this entity on the couch, strangely distant, hardly there. They needed to feel a better connection to their brother, somehow, that would approach something normal even though he could not react to them in any discernible way.
I began to make a habit of placing him directly into his wheelchair as a difficult situation found its resolution, to rest there and bring him close to us when we sat down together at the table, in itself a rare opportunity.

Like a glass knocked off of a table rushing toward the floor but picked out of mid air, the image of it shattering into a thousand shards already in your mind, yet placed once again on a secure perch, is it possible to aggregate all the worth of his life and have it grace a singular moment in time and yet feel paradoxically empty?

He was sleeping one particular time, close to my chair at the dinner table. Automatically I looked at him every half a minute or so and thought to myself ,"he must be deep deep asleep", since his chest moved ever so slightly as he breathed.
We spoke only a little and were eating the meal I had prepared. I looked again at Segev. It seemed to me that the movement of his chest was slowing down. I felt for his pulse on the carotid artery. "Look Kids, Segev's breathing is stopping" I said as I rose from my chair.
I could no longer see any movement coming from him but waited to see if it was just a moment of unclarity of my eyes or I hadn't felt the pulse properly or perhaps I would instantly see Segev take a deep breath in his sleep, like happens so often to many people.
But nothing happened, there was no gasping for breath. There was no instinctive fighting to counter what his body had chosen not to do. His lips had already lost their normal color being replaced by a purplish hue, all in a matter of seconds. I began chest compressions, jostling him in his chair and ready to press my lips to his.

Without waking he began breathing again and his colour returned to normal and I noticed a heavy, tingling pressure on the back of my neck. This was neither Segev's first case of central apnea nor his last and in my head I cursed all forms of silence.

For that moment I felt like a zombie might, pressing onwards with hollow intent or a lack of understanding of all intention.

Still, despite a dramatic moment to cling to I focused on the gain of those tiny installments for the children that have claimed momentum through my persistent suggestions so that sitting at the table was joined by saying "goodnight" to Segev, "good morning", Noa explaining to him that she is heading off to school and through the years so much more.

At some point Segev became their little brother again, he became a person rather than merely a chronic illness. From that point on, despite daily struggles for survival, I was able to express more emotion, find reason to rejoice and give thanks without considering whether there was just cause.

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