October 30, 2011

Finish what's on your plate

It seems to me writing about my son Segev actually makes the journey appear longer, though strangely somewhat less anxious.
There is a saying here, in this warm climate, often heard, "this is the hottest summer yet". Every year it is repeated and I always thought to myself, 'what are they on about?'
And so it has been with Segev, each year seems to be harder but I know that for a good part it is my becoming a bit older, wearing down the polished surfaces of experience nearly past the point of usefulness. Now the edges are becoming rough and the anxiety is definitely increasing proportionately. Less capable of caring for him at 46! That's a laugh. So it must be psychological.
And there is something not so funny.
Segev continues his recent regression unabated. Flaunting his delicate balance, headlong into the oblivion of those massive seizures.

I have tried to take catnaps while my daughter keeps an eye on Segev and I succeed every so often to doze off for fifteen minutes or even more but it is only just enough to keep me going while repeatedly I feel my eyelids literally closing on me in the evening.
The nights remain tense with his staccato breathing, rasping violently like an old car breaking down. Neck muscles tightening, my neck muscles as well with resultant dizziness and trouble focusing in the morning. Segev quite oblivious for the most part, catching up on his sleep throughout the morning.

It could be worse I say to myself and yes, I do believe that. Have to reign in the shakiness a little, remain focused as I have often said and always be at the ready because when you are feeling weak and tired, you've had your fill, that's exactly when -BOOM - you get clobbered. Unfortunately I can't go into the details of the clobbering that I received, but suffice it to say that it concerns some troubling matters from the past coming to a head.

Insofar as the normal issues are concerned,Yes, I know I'm trying to be lyrical about such mundane acts as sucking Segev's stomach contents out through a tube, enjoying sprays of bile and acid in my mouth as the pressure suddenly releases for the umpteenth time today. Gagging and nearly retching despite it never having bothered me before.

Stress works in mysterious ways. In the skype chat I had with my mother, after yet another such long silence because she doesn't have the energy, at the end I always blow her a kiss, after her own habit and she tried to raise her right hand to her mouth and couldn't do it, looking pleadingly at my father to take the laptop from her. I sat stunned.

Being an adult is not the fun I thought it was going to be as I wrote story after story, day in day out, an exuberant 16 year old, looking forward with inexhaustible curiosity.
Yes, I am angry, simply because I don't feel I have the physical strength to brace myself cheerfully and try to make things alright.
Clobbering by betrayal will certainly suck the wind out of your sails, in troubling ways that I didn't know existed. And the more trust you place in a person the harder it hits you.

But don't get me wrong, and I've found myself saying "it's not meant as a platitude" in several places lately, this negativity takes place parallel to but not in place of a strong healthy stream of acknowledgement of positive things.
Well, that should be clear to those that have read well previous posts.

My mother's last sentence, which she wrote in the chat, was "Segev is so lucky to have such a great father", and I told her, "I'm lucky to have such a great son". And even now, with the gut-wrenching seizure of an hour ago, his inhalation therapy running and the prospect of a troubling night ahead, looking at Segev, who has no demands, is so accepting, acts to calm me and put in perspective my frustration with the inability to change the situation.


  1. It's always good to hear from you and to hear of Segev, although I hate that the two of you suffer so. I send you warm thoughts of ease.

  2. Will keep you both in my thoughts. I am sure that it was through some universal sense of synchronicity that you both are sharing this life experience