May 30, 2013

This might sting a little

If it's done slowly

there is more of a likelihood that events will fall into place. But Sunday morning, as our planned visit to Alyn hospital in Jerusalem was underway, I stood helplessly at the garage waiting for Segev's van to become available. The engine overhaul complete I was still required to test drive the car before the trip to Jerusalem. The delay meant we finally arrived at hospital several hours late for the slew of scheduled appointments.

May 18, 2013

The well is deep

For a brief  period there was a religious woman who came through social services to help with Segev. She had the right spirit but no direct experience with a child like my son, although she had several children, one of whom is somewhat disabled and another with more serious, autistic spectrum issues.

May 17, 2013


Day after day,
the level of anxiety has been considerable. Since the last time I posted there has been no steady reassurance of resolution to his double pneumonia as his oxygen parameters refuse to stabilize, dipping both suddenly and violently.

May 14, 2013

Another kind of moment

It is understandable that there seems to be quite a contrast between the rough sentimentality of the previous post and what is happening now with my son. But in actuality it is the dense yet fragmented understanding of his precarious life that brings with it a searing beauty.

May 04, 2013

In the moment

I just realized something, about Segev, about our moments together. It came as a soft call, like a voice amongst the trees, that Segev knows he is loved. It came at a moment when he woke with a seizure, as he always does. Whenever he transitions from sleep to wakefulness, and often the other way around, when descending into deeper sleep, he has seizures. For years I believed that like his many other fits, with this seizure he was not conscious, until he started to move his locked eyes to and fro. That was always the signal.