April 16, 2013


"You cannot lose that which you never possessed", may ring true in a wide variance of situations. I wonder though in the case of love if it carries any weight. If you love someone and that love is not returned, then you have lost something in potential, but you feel it as a loss nevertheless.
It has never seemed prudent to me to ponder all the things that my son has lost, never been able to do, to experience. It strikes me that  essentially his existence, hollowed out, truncated in the extreme, has characteristics similar to a person whose life has been cut short. Every moment is complete, perfect, unless we choose to perceive it as missing something, except that we cannot choose our heart.

Segev has no abilities at all to express himself in an understandable way. No manner in which he can procure even basic elements of survival or satisfy any of his senses in a comfortable way. Yet for Segev life is about seeking comfort and a modicum of health, both of which must be sought out and provided by someone else, without many clues other than basics, understood by all, and the intuitive searching I have learned to embrace and cling to dearly.

I honestly cannot say that wondering how many more times Segev will surprise me with his resilience, leading to a question of how much longer he can last, has become more prevalent while coinciding with the gaining momentum of my own physical and mental fatigue.
If there were only one thing which Segev has taught me, it would be the limitations that we must come to terms with. And being who I am, my sense of pushing those limitations further away, paradoxically, has only been strengthened. A kind of winning by losing, as I put it.

The search for pushing into areas of physical and mental ability beyond what we would normally encounter necessarily carries with it a profound lack of certitude. And this is a role I see many parents of extremely ill and disabled children willing to take, despite that the decision making, often necessary in real time as an answer to a crisis, takes its toll. More so the longer the situation lasts. There is no comforting routine in this kind of extreme parenting.
Not knowing should push us; rationally I believe 99% is always, unknown. What we see, not even yet what we can comprehend, is merely one percent of what is actually going on. So it is our duty to explore, since there is so much to learn. 

It could be said that the only potential that Segev has as a person is what is given to him, but this does not in my view make him any less of a person than someone who pursues dreams, fulfills life with their abilities and establishes readily visible milestones. Rather he is simply a person who is not able. There is nothing more natural in my opinion, than making an attempt to reach out and provide some manner of support, so that the playing field is more level and the unique effect of each person can more readily find its expression.
It is an entirely symbiotic relationship and only the drudging ignorant, out of fear, see those that are not 'able' as inferior.

Often, perhaps more of late, I simply hold my son in my arms, something we both enjoy. In any case this opens an avenue to apply particular techniques of manual pressure or massage to make him more comfortable with his awkward and bent body. Until my arms lose their feeling and I need to call my eldest son to pick him up. When he is not home I gently roll him from my arms onto the sofa and either continue to work on him from this position or, as is more common these days, let him continue his slumber, punctuated always by seizures and a complex and demanding schedule of feeds, medical equipment and medications.

I’ve kept my life at bay, slipped into slumber

Disease and decay

Meds take me from numb to number

I’ve slept my life away

(from slip to be found in the upcoming volume two of Little Job's book of broken poems)

The slow decline, gaining in intensity, has taken on the airs of an abstract notion to me. Partly this is out of self preservation, a concept I have been trying to develop of late, since I realized I am firmly in the grips of both exhaustion and a concomitant depression.
The only thing I find of any interest is making Segev comfortable and absorbing the energy of his smile. Food and wine, a great source of interest and comfort all my life, no longer holds any mysteries.  Pride over my eldest's recent award of excellence from the army, presented in a ceremony, begrudgingly trudged to the surface of my conscious mind only after repeated congratualtions from others.
Companionship is simply a word, like the printed cover of a faded and tattered book glanced in the dustbin on an evening stroll. I honestly don't think I even know what the word means anymore. Writing is forced, but mostly left to rot, soon wiped from memory with a 'good riddance'. The absurd part is that when depressed, you actually believe that you don't deserve to be happy.
Never one to make plans (since Murphy's law was concocted specifically with me in mind) I do so anyhow, quite like when you buy a lottery ticket, even eagerly checking the numbers, because you somehow got it into your fool head that you might actually win.
These days, anything slightly positive is like winning the lottery and I hate myself for being morose and not presenting a brighter disposition to my children. But the show must go on, as they say. Here, yesterday was memorial day. Very sad, very heavy. Which, upon contemplation, gives me motivation to 'suck it up' and stop crying so much.

We have moved to a new house, tiny though it may be, infinitely more comfortable and cozy. The smallness actually helps to save on electrical bills, which were astronomical in the damp, dingy dump previously lived in. I have professional help with housework and will soon be publishing my second book of poetry. Honestly everyday I am grateful for what I have though I feel it is nay impossible to convey that sense of loss, not my loss, but the loss that my son endures, in these pages, with these words.

Honestly (honestly!) I feel his life, while intricate, difficult and perplexing though it may be, sees him suffering much less than most, who must suffer the consequences, as we all do, of our own fears and complications. I feel that Segev has been given a place to feel, if not entirely safe, loved, and this in part is why I believe he does not know fear. 
That would be an incredible lesson to understand, one I wish had come sooner, so as to benefit my two older children. I wonder how their experience with their brother will shape them later in life, and just how much of a beating I will have to endure when their future experiences highlight what was wanting in my role as father.



  1. I think, as always, that all I can do is bear witness to what you endure and how you express yourself. I have done so, for years, and I will continue to do so for as long as you need it. I send love and succor to you both.

  2. I have to echo what Elizabeth has so eloquently said. You and your family are always in my thoughts.

    I look forward to your second volume of poems--the first is on my kindle and revisited regularly.

  3. As always, it's difficult to know what to say to your posts. Maybe nothing needs to be said, but I do want you to know that I read it and it touched me.

    What I do want to say in response to your last paragraph - knowing it will likely fall on deaf ears (as such comments fall on my own deaf ears) - is that, as a parent, you most certainly have done and continue to do the best you can for all of your children under the circumstances. This journey of extreme parenting is one that so very few will ever know or understand. There is no road map, no rules or tips on how to navigate this. It's a matter of survival for us as much as it is for our children.

    You are a selfless, devoted and exhausted parent doing the best you can do. So, I challenge you (as I challenge myself) to adopt the mantra: I’M DOING THE BEST I CAN.

    Onward my friend.