August 28, 2016



From long ago, a serenity long lost.

I felt, as I woke Segev's brother and sister, that I was teetering on the brink of a precipice.  I thought that I had come close enough to my son's death enough times, to stand firmly on my own two feet. But I felt unsteady as in the midst of a severe storm, not buckling but oh so unpleasantly buffeted and pummeled. I thought, 'a few more hours' and that soon I would be consoling my eldest and middle child and they would be consoling me. So I woke them as they tried to find rest after they had helped during the night, assisting in emergency care for their brother who was barely able to take breaths and whose oxygen level, despite hours of constant chest compressions, ambo bag, IPV and suction, was hovering at 62%, having been stuck for some time as low as 50%.
Hours where the fear was not just to make him breath but that the chest compressions wouldn't break his ribs. His throat was partially closed off making suctioning impossible. The administered steroids might help, but they would take time and presently he had been without sufficient oxygen for so long that damage is not just likely but a certainty. 

There was a build up over the two previous nights and we all worked, myself and his mother without sleep, to keep him going. He made it through those nights but it left everyone on edge and under a heavy, somber mood. At four O'clock in the morning, yesterday, it slowly became clear that this was unmanageable, but I still wasn't ready to let my heart follow my mind and so continued. After another intense hour of compressions his oxygen level wouldn't budge from 62% and it took several more minutes beofre I slowly reached to turn off the pulseoximeter entirely, knowing that whatever reading it showed, nothing more could be done. It was completely and utterly out of my hands, perhaps for the first time ever.  In that moment of silence only the humming of the oxygen compressor had something to say and I wondered if I should silence it as well.

He was well sedated. Though, as his mother pointed out his breathing was slow and very labored. She suggested we further increase the sedation so that he wouldn't struggle so much to breathe. With a sense of relief I quickly agreed, in my head, but as I actually responded to her I said, 'No, not now. Maybe later, but not now.'  I sat with my son and spoke to him, of important things that we know but sometimes need to say aloud. I caressed him, kissed his hands and face and thought of the incredible journey we have had. I told him I was sorry it had to be this way and didn't know if he would somehow understand enough, from his own ability to make sense of things, pared as it was to a few basic perceptions, to forgive me, if ever he saw fit to place blame. I cried quietly. 
I thought Segev's brother and sister should use this opportunity to say goodbye to their little brother and I woke them both.  I lay on the couch, too emotional and exhausted to be deep in thought but still managing, 'this is it.' and then, 'How long will it take?'  I fell asleep; an hour or two passed and I woke to hear his mother's excited voice: "He's up to 84%!" 

Now Saturday, Segev has even managed to smile here and there. I'm giving him antibiotics even though the medical consensus is that it won't be of any benefit. Like the decision not to increase his sedation at a critical juncture, which could very well have further suppressed his breathing, I follow my intuition in all important matters. We are completely drained and still  try to maintain Segev's always complex care but now, with a sense of urgency and heaviness that simply outdoes any other period over the entirety of the last eighteen years. We continue to move, stumbling perhaps blindly, bloodied, but still moving.


  1. All that we ever have to faithfully rely upon is intuition grounded in unconditioned love. Segev's time is not our time, but he is ultimately in charge ,,, he maintains a fierce spirit to console with a smile. We, take one step at a time, limited by the endurance of our strength and the driving force of our love. I hope to be able to speak with you soon... Sharon and I and Adam hold you all deeply.

  2. Smiling back to Segev. Having a cigarette with you.

  3. I've been anxiously awaiting your next post and am glad that once again Segev has beat the odds. I have found over the years of caring for my Chaya that often doctors are just guessing - particularly when they are treating cases like her where so many symptoms are unpredictable and incongruous. Some of them even own up to doing just that. Others pretend to be making "scientific" calls. But your intuition is sure to surpass their capabilities in many circumstances. Wishing you even better days ahead - and Refuah Shleimah!