More and more it has come to my attention how caring for my son has isolated me. It has left me with less understanding of how people relate as I have gained a deeper understanding of the essence of caring for another person who cannot answer their own needs.
In trying to extricate people from difficult circumstances I have lost an ability once taken for granted, where the sense I could make of a situation was a shared understanding. Now my burning desire to garner a true resonance with ill health and to sway its course has brought me to a place where everything else seems, well, less than whole. In other words, I've become a fanatic.
The last three days were spent with my son in hospital, as I told one friend, a "last hurrah" to bring to bear the perspective of others onto his health problems because I know that, without causing him duress, there is still work to be done. I can no longer build him up but there are still avenues to explore to slow the rate of decline. Through perseverance and perhaps quite some luck hospitalized consultations were scheduled at the children's rehabilitative hospital in Jerusalem.
Without regard to outcome in the limited time available, there was a concerted effort to explore options and a genuine interest in supporting us as a family caring for Segev. How ironic that the only other person able to accompany us and most needed, was my ex-wife, Segev's mother.
So many hospitalizations over the years. So often my decision also not to hospitalize but rather weather the storm at home with absolutely nothing holding such a decision together, not even hope, but rather the ephemeral quality of faith. So very very strange that at such a late stage in the game perseverance and luck became co-conspirators operating wholly outside of my ability to control them.
When I wrote previously of the meeting with the head of ICU, a kind of mechanism was set in motion that took me completely by surprise and by the time I had pushed forward with appointments and authorizations it was too late to ask myself that question to which the answer turned out to be "no": do I have the strength, at this stage, to make another run at it?
We spent three days in hospital, with practical application of respiratory devices and a variety of consultations, x-rays and social support which has left me feeling 'wiped out'.
I don't trouble myself about the sense of confusion I have, after so many overly intense years of directing action and mitigating influence. Of studying information discarded seconds into a meeting, or rehearsed conversations designed to steer thinking towards specific lines of investigation which has become a nearly futile endeavor.
In hospital, such as last night, one of the worst nights ever as I worked from two O'clock in the morning for three hours to make a change in Segev's breathing as he calmly remained apathetic yet in the end, and for the first time ever, did not yield to my relentless efforts, maintaining a serious deficit in breathing. Finally at five O'clock I called his mother to come, not even thinking of asking for relief but knowing that I was waning, if not in resolve then in ability.
Again irony struck as for the first time I conceded defeat and let myself be convinced that the only way to keep on going was to go and rest.
You like to believe that with all the experience you gain in being an extreme caregiver, a parent dedicated to compensating as best you can for what you see as a gutted life, with decades of dedication to treating patients with their ills and woes, that you would necessarily become hardened with the vigor of knowledge and steeled by the application of grit night and day, endless night and day.
But what you become is actually economical and specialized. Your clarity is unsurpassed in the extremely narrow margin of life you relate to (since much is relegated to a place of lesser importance) and your legendary strength exists, no not merely in your own mind, but only under well controlled circumstance.
In other words you are weak but you fight to admit such a thing, simply because you fear that weakness will hurt this endeavor to submit circumstance to a more favorable outcome.
So I was grateful to yet again be humbled by the stay in the small specialized hospital in Jerusalem. There is nothing quite like seeing so many people, children and infants in such a wide array of severe physical and mental compromise, represented in one place. So many standers and walkers and wheelchairs, occupational therapy, cushions and braces, respirators. Different forms of communication, motor control, and surgeries undergone. Smiles and quiet conversations, dedication.
We entered a socio-medical system which has nearly always failed my son due to his unique set of problems and my lack of compromise.
It's simply not possible to maintain the protective environment, mostly the 'home routine', in hospital. The sheer energy of the place was sensory overload and brought social awkwardness to the forefront; congealed around my spartan social life and nearly singular focus on my son and I felt put through the grinder as certain issues arose. Adjusting to a room full of children, each one with serious problems, all ages, everyone's alarm going off for a different reason, sometimes in unison, mostly during the night, is cause enough.
Sleep is even more of a joke than at home and as the children's stories becomes better known with each passing hour spent in the hustle and bustle of a respiratory rehabilitation ward room, you wonder if you have the strength to stay and play out your hand even though you have no idea what the game being played is.
Segev had ups as well as downs. There was a great deal of inconvenience to overcome (no coffee within five kilometers being one of them) as well as the necessary tension that ex husband and wife can have in such circumstances. Without a doubt though, to further add depth to this different experience, Segev behaved extraordinary on occasion while there. One physiotherapist spoke to him to gain his trust before placing the IPV firmly on his face and his eyes darted toward her face, a first in all his life, as though some connection snapped into place. When non responsive his stupor was as deep as ever but with less visible tension in his frail body and when he was animated, certainly more there than usual, his vocalizations were also consistently longer.
He understood he was in a different place and reacted to the increased level of activity around him which made me remember the bitter feeling of shame when years before, his circulation in public diminished as the burden of his condition made it unreasonable.
I'm glad for the assistance in these attempts to help my son, regardless of outcome. What a coincidence that as I was uncertain if I actually had the strength to go through with it, indeed finding myself confronted with a much greater weakness both physically and mentally than I could possibly have realized going in, at a time which can only be described as Segev's limelight. Part of my strength has always been my son's resilience and good nature, the purity of his life experiences. For some part his in return has been my not knowing when to quit. All this may sound rather premature and bodes of self fulfilling prophecies but, as a friend said to me recently, as though these experiences necessarily envelop us in a dream like confusion, 'none of this was imagined'.