March 20, 2013

And so it goes

It seems logical to me that in the beginning most parents struggle to understand what has happened to their child since knowing what has caused it opens the possibility that something can be done about it.
With few exceptions that I can think of, the knowledge though usually comes too late to do any good. Certainly defects, caught in time and corrected, can greatly increase the quality of life and often its length.
In Segev's case, the deficits he was born with are both myriad and profound. Born as he was with severe brain damage, that occurred while developing in utero, his body was in essence, programmed to self destruct. His kyphosis, as seen here, has a major impact on his health, particularly his lungs. Several aspects of his autonomic nervous system are damaged allowing, for example, reflux (regurgitation) to occur and which led eventually to permanent lung damage. Some of the insults to his body have been acquired, such as the apparent damage to his phrenic nerve from the implantation of a VNS device to try and combat his permanent array of seizures, which led to paralysis of his diaphragm and subsequent lung collapse, accelerating his deterioration.

March 14, 2013

The river bed

The recent post from Harold, who ended up in hospital and asked if perhaps after all he isn't invincible naturally brought up many thoughts about my own health and my experience with hospitals regarding Segev.
My experience has been nearly wholly negative all these years, both on the personal front and with Segev. I have said before both here and in private conversation that the circumstances that would see me once again taking Segev to hospital are nearly non-existent.

March 08, 2013


When Segev was born and it began to be clear that something was terribly wrong with him the advice that we were given by physicians was, "make another baby, because there's no point in investing in this one."
I often wonder why I have such a difficult time seeing the concrete evidence of all these years of effort in fighting for my son, despite it being right in front of my eyes.
No one can say that I haven't lived in the moment of appreciation; I stood, drinking in every second in voracious gulps that only left me more thirsty. A consumption born of worry.
I proclaimed The Message, like some kind of evangelist, of what love means in the face of destitute hardship, ill health and transparent confusion, standing empty handed for years as I never stopped extending my hand in the hope for assistance.
And where there ought to be unrestrained exultation, tomorrow being Segev's 15th birthday, there is the realization that palliative love is also love.

The joy of holding him has been replaced with a quiet murmur of contentment as his heart continues beating, holding my tears in limbo with less of  'when?' and more of  'it's OK'.
His smiles fade and I punish myself, by looking at older pictures that do not reminisce, but taunt.

I realize that as he winds down I am letting myself believe there is little else; this self pity.
It will not do. He has brought awe into my life and I cannot forsake the strength of that connection.
It feels better, now, to have said these things, brought them out of the recesses of an isolated mind and be done with them. There is still time. Tomorrow, balloon's are in order.

as promised