At times I write about Segev, specifically about how he is at that moment, what he is enduring and at other times I write down my thoughts on disability and what this life of caring for my son does to me as well as my take on the bigger picture.
Of late, especially since my mother died, I have had much less of a feeling to write about Segev and it is clear to me now why that is. It is something, an element or natural outcome, of describing the life of an extremely physically and mentally compromised child who has a short life expectancy. We are made uncomfortable by it, as I know I am when I read about other children and their hospital stays, their increased need for medications and the ever expanding diagnostic testing, that, though with basically good intentions is truly searching in darkness to understand these most complex of human beings. I read of medical issues, most of which I can understand and quietly read in between the lines of the struggle the parents undergo, most prominently from uncertainty.
We are uncomfortable with watching a person's decline and can find several ways to skim over this fact. While I have been preoccupied with that very aspect of Segev's life from the beginning, using it to find,the perhaps excessive, motivation needed to completely live a role as lifesaver, it is only now, with years of accumulated wear and tear both physically and mentally, after the death of my mother who personified an accepting, positive existence, that I am finding the perspective needed to come to terms with how little I can do for him.
In contrast, I have always been aware of how much I can do for my son. As a father this is very difficult because there can be no real awareness of his needs, i.e. how much he is my son, in need of the connection with and the protection of his father, much easier in regards to being his caregiver because there, his needs fall in line with my incessant attention to detail and my long time career as a professional caregiver.
Many need not or prefer not, to distance the two aspects of their relationship to their child; they form a continuous whole where cracks develop only when they either suffer tremendously under the strain of their child's condition or they set out, perhaps unknowingly, to push beyond the boundaries of common medical knowledge and yes, medical ego.
Recently Segev stood before the tracheostomy surgery which I postponed in order to assess a larger problem of his diaphragm being paralyzed on the left side, effectively shutting down his left lung and contributing to a host of problems including oxygen levels, stomach irritation, feeding difficulties and pain. In order to get a better understanding of our options for dealing with these issues I went to consult an especially knowledgeable and especially congenial physician in Jerusalem.
The trip was difficult because it was long and I had a splitting headache and Segev requires several activities be done for his care, without the possibility of suspending them for any length of time. During the meeting the physician was rather taken with my solution for having been able to postpone a tracheotomy for the last five years by applying neck braces to try and stabilize his receding jaw and discussed the need to investigate this option for his patients with the attending physician.
His certainty in regards to the origin of Segev's declining respiratory state was at the same time comforting, he suggested a way to alleviate some of the problem with a treatment that I initially resisted,but also disconcerting because I know that while I believe he is partially wrong, there are few if any alternatives. Presently I am in the process of determining whether something, which looks to be a long shot at best, could provide such an alternative.
In this look at strategy though a major problem lies with those aspects of Segev's care where I am merely an observer to his accelerated decline, something very painful and rightfully so. The area where I need to grope in the darkness by inventing treatment techniques or constantly be aware of how his physicality can be altered to slow the decline, such as repositioning him and even finding proper positions to lessen stress on his decrepit spine, to challenge medical assessment and thinking where Segev represents either a tiny little box to certain specialists or a kind of empty, unknown void to others, is where most of my concern has lain these last fourteen and a half years.
Briefly, when Segev was about one and a half years old, still putting aside the idea that his life could end momentarily, I researched the possibility of applying some manner of 'cure' to his brain. A way to, even momentarily, slow down the supposed cascading brain damage his myriad seizures were causing and even further than that, to try and influence new brain cells to form, this time, in a more correct fashion than which occurred during his development. There was a doctor I found in Australia who was injecting stem cells directly into the brain of children with a particular inherited neurological disorder, perhaps with some success.
But of course back then, in 1999, I might as well have been discussing an H.G. Wells story, as novel therapeutic approach, with any of the many physicians that I used to bounce such ideas off of. Stem cells. Directly into the brain, what nonsense. Then it was indeed nonsense and it is unfortunate the Segev would never be one of those children who was born into an era that had an answer to his discrepancies.
But that was then and since,I have had the honor of watching a whole new world unfold. So many things have changed in me and in my life, but not only my life as Segev has been able to connect to many people all around. There has been a natural development surrounding what Segev can teach which, thankfully, continues and will continue long after he is gone. No mere wishful thinking, but founded in the knowledge that as long as I am capable, dealing with that ugly phrase, of what is the worth of severely compromised children will be an essential element in my life.
What has not developed really though is Segev himself. Well, I suppose that is why the term, 'arrested development' exists. Still, that is strangely where a great deal of his strength lies together with his ability to create a positive feeling despite the process of decline that dominates his life. The long periods that he lacks any connection to the outside world, living in a semi-comatose state, oblivious even to pain stimulus. But then he springs back, when the hope to ever again see his smile slowly faded to less than a glimmer over weeks and weeks of stupor.
His moments of 'being there', unchanged by mood or expectation, untouched as he is with any element of ego, is a severely humbling experience all the more once you have seen him rebound from an episode of excruciating pain, of hours duration, with a smile.
That is why his smile, just once, can sustain my efforts, both physical and mental for the entire day. Because I do know what stands behind that smile. It is the very essence of our life force, it is an indomitable spirit who is connected to the source, uncluttered, unfettered, not weighed down by all of our complicated manipulations in our interactions with others nor ourselves. That smile is saying, 'this is life, take it.' in all its meanings, folded into one.
But if one day, I never see that smile again, I know that it was there, when it was supposed to be there. It really existed and it indicated something beyond the moment itself, a distillation of something eternal, something that goes on even when what was visible is no longer visible.