January 21, 2011

There is a hole in the bucket, dear Liza

I thought I would chime in.

We can talk about many things when a parent is the main caregiver of an extremely mentally and physically compromised child. There is philosophy, ruminations, discourse.
At some point we must speak from our personal experience.

friends  by Noa Fischer

I have come to read a wide variety of blogs, quite often ones where the mother blogs about her 'special needs child'.  I read those blogs to try and keep some perspective on the real world. To see lives where there are certainly added difficulties, but where there is still the pattering of little feet, words and conversations. Laughter and understanding in ways that most people are used to. Not constant illness and the trepidation of death.

If there is any justice in the world, I will outlive my son. 
I like thinking that he will somehow improve, somehow get over his insurmountable lung problems, his flaccid paralysis, the missing bit and pieces of his brain, the deficits in his autonomic nervous system. But he won't.
He may surprise me and survive yet another case of pneumonia, his lack of coordination in breathing may stabilize for a while as his seizures are better controlled and he may even gain some control over his sight, but the big picture of death looming, looking over my shoulder, waiting for me to screw up or if not, simply biding his time, still remains.

I'd like to be able to say that isn't what I believe life is about and that I seek to fill every conscious minute that Segev has with something positive. I'll say this, I'm never automatically doing things, attending to his many and complex needs. Rather always testing myself. To see if I hadn't forgotten something, if there isn't another way of doing things. But I've undergone a slow yet forceful and thus very noticeable change.  I could feel it happening and it has made me very uncomfortable.  As it came to a head during the last two weeks, having been exhausted, I have no doubt my raging reaction at the equipment failure (which cost me my voice for several days) was the culmination of this dreaded realization.

I have come to believe, after close to thirteen years of caring for him, that I am doing everything that I possibly can for Segev. I have given it my all.
I was continually driven by the knowledge that there is always something lacking. Much more than the obvious, that there is something I haven't discovered yet; rather that I simply cannot do enough. It is not healthy to be driven like that though. 

This new feeling has been gaining momentum for the last six months or so, long before his last brush with death and is more troubling since I have been able to predict, vaguely, Segev's major incidents in the past. I have always known in advance that he would end up in hospital, before any signs were visible of impending crises, for example .But in all honesty, one of the influences on this new realization must be that I have a sense of him slipping between my fingers.

change by Noa Fischer
I found strength in two things these last two weeks; one I've already mentioned and remain grateful for, the people who felt it right to encourage me and tell me that I should remember one thing especially, that I am not alone in my understanding of this utmost difficult journey of Segev's.  The second thing is my intuition, which has now once again let me know certain things which I won't repeat here due to superstitious beliefs.

I don't know how hard it is to imagine these circumstances of 'extreme parenting' or to understand them. Actually I'm not sure it has anything to do with parenting anymore, just as an extreme skier has little to do with the many average people who enjoy swooshing down the slopes once or twice a year.

The situations I come across might translate to other situations after all. Many people are involved in actively challenging themselves to the point of risking death on a regular basis. The sport of formula one racing comes to mind.  It seems that a great deal of our leisure time and money is spent in watching other individuals participate in very dangerous past times. We pay money to see two men beat each other senseless and marvel at people jumping out of an airplane in order to make acrobatic maneuvers in the sky, all the time thinking, 'well I hope his parachute opens'. Aircraft acrobatics, mountain climbing. Drinking dangerous amounts of alcohol.
It seems to me that we are quite obsessed with our ability to push the limits of what is possible. We marvel at people who survive catastrophic events. But this continued obsession causes me to conclude that, while it is apparently our DNA which makes us do such a thing, to better understand how we can continue to survive under hostile conditions (yet to come?), we don't seem to take away from those experiences a greater appreciation of life. A need to slow down and enjoy normalcy. Because normalcy is boring. Mediocrity is a poison.

Well my son is not mediocre. And his life is filled with drama and death-defying stunts, close calls and even temporary reprieves from the greedy hands of death. His extreme life is hardly television fare because the soap opera hasn't been written yet which would come close to describing what he has gone through. It wouldn't be believable even if it were written.
And it's not very interesting since we want to see a man survive 127 hours in a canyon in the desert. On the other hand we love a good tragedy. But with Segev I don't see the punch line. A good tragedy has to be filled with irony.
Somewhere I once read the difference between tragic and tragedy: A man walks in a field and escapes the blazing sun by sitting in the shade of a large tree. But dried out by the sun, a large branch falls on the man and kills him, that's tragic.
Now the same man takes shelter under the same large tree which, being dried out from the sun, loses a branch, landing on the man and killing him. He was under that particular tree though to meet his secret love with whom he planned to escape the tyranny of her father and start a new life abroad. That's tragedy.

Can you imagine a television program called survivor which follows the life of several children like Segev, to see who lasts the longest? Is this line of thought getting too macabre? Where does he fit in though? In this society. Why isn't he the subject of intense interest since he has all those elements present that we are obsessed with? Is his suffering not great enough? Are his smiles not endearing enough? The surprise of his eyesight could be teased for months in advance and draw in great ratings.

Of course there are places on earth where popular western culture is not the mainstay. Where they don't even have televisions. But then many places also don't have the luxury of the medical treatments which along the way have saved Segev many times. In those other places, Segev would certainly not have lived more than a few months.

This piece though isn't about decrying the trappings of modern western pop culture. Technology, well-being go hand in hand with the luxury of giving in to our need to satisfy pleasure and curiosity, since survival is a moot point. Except for children like my son. 

How do extremely compromised children like Segev find their niche? I think the problem lies very simply with the fact that if there is no way to fix it, no way to solve the problem, all interest is lost. Because telling the tragic tale of Segev and inciting 'ohhh's and ahhh's' is not helpful. 
So if there is no solution that will fix the problem of Segev's mangled existence then at least we need a message, a little gem of a sentence that will embody some pearl of wisdom.  I think I know what that is. But I'm not certain many accept it. I think that gem is that these children need to be nurtured and cared for. And their progress reported in the news, the same way as sports results are. Because the fragility of their existence is one of the most extreme endeavors on the planet.


  1. Well, Eric, I accept and embrace your concept. In our minute ways we celebrate the progress, the fragility and the tenacity of our sons and daughters; more people report these results as each day goes by. Ten years ago these stories were closeted, now efforts to change this history are evolving...perhaps not in our lifetime, but there is a consciousness slowing developing. We cannot rest...and I am so much more interested and inspired in Segev's battles and victories than some dumb-ass sports team. I appreciate all your efforts to disseminate these messages. People do hear!

  2. The first thing I thought as I read this post was how much I wished that I could answer that question: "How do extremely compromised children like Segev find their niche?" -- and I wished I had the message, the "little gem" and all would be wrapped up and perhaps a refuge would be made, a place of certainty and permanence. Sometimes, it's just about on the tip of my tongue and then disappears, or a fish in my brain, swimming by and through some tendrils and then it's gone. You touch upon it -- and it's so profound and dark. What am I saying? Not sure -- but this post makes me ache a bit.

    For what it's worth, I'm thinking about you and Segev -- sending continued strength and endurance, peace and love.

  3. What always amazes me are the things which block people from understanding, which is the fervency with which they adhere to views that are in their very essence truncated since it is so painfully obvious that the world is still evolving and our understanding of things is miniscule, embryonic. Once we realize that we still need to learn, not just technology or be possessive towards materials but that we still need to learn human relations, perhaps caring and acceptance will find their true place in our hearts.