April 29, 2013

Some of the things we do have little consequence save for ourselves and our immediate family. When I began writing on this blog, a few sporadic poems formed part of that attempt to chronicle family life with Segev. Though not much of a chronicle since the majority of the posts were subsumed by my commentary on this claustrophobic life, leaving less room for the few simple moments as the catastrophic struggles of my youngest son readily stood out. 
Perhaps as a counterpoint the fewer words of poetry made sense. A spontaneous search for balance within the vociferous conjugal of altered life, the diatribe that burns within which seeks to preserve that which is without.

April 23, 2013

A kiss

I kiss his hand. It is damp and he flickers in and out of troubled consciousness. Do you understand?

I'm here, watching him, watching over him but where should he be? He seems everywhere, in everything and yet I must keep him contained, in this tiny little life where anything is everything.

Do you remember what they said?

How spare of life to deliver success
when all the blossom gotten for is that of duress.

Where frailties which can no longer blossom
are all the potential that God has forgotten.

And so it goes, again.

Segev plays a faux recovery on Saturday

I was up last night, more than usual, tense and at the ready as usual since Segev is once again sick,  but surprisingly not upset . His lungs again (for a full description see Segev’s facebook page).

I would not be surprised if you were to find it a reasonable thing if I tell you that I have thought of Segev’s end a thousand times. But the truth is, I have never thought about it. Never think about what will be after Segev either. We are in the fight, quite simple.
I’m not certain when the big double pneumonia will come along that will be too much as is the case for many, many children, who like Segev are multi-complex disabled, medically fragile and, significantly, suffer from Ohtahara syndrome.

April 21, 2013

On giving up

There were times when i thought, "i can't go on", times when i thought about giving up. No - times when i felt i had given up. Given in to the anguish and let it fester into despair.
Silly me - confusing exhaustion with giving up.

April 16, 2013


"You cannot lose that which you never possessed", may ring true in a wide variance of situations. I wonder though in the case of love if it carries any weight. If you love someone and that love is not returned, then you have lost something in potential, but you feel it as a loss nevertheless.
It has never seemed prudent to me to ponder all the things that my son has lost, never been able to do, to experience. It strikes me that  essentially his existence, hollowed out, truncated in the extreme, has characteristics similar to a person whose life has been cut short. Every moment is complete, perfect, unless we choose to perceive it as missing something, except that we cannot choose our heart.