November 09, 2014

The narrow passage


Each moment with Segev is special to me, though I find my mind wandering more often to fantasies of an easier life, mostly as I drive to house calls,  trying to provide pain relief for others as physical therapist.

I feel gutted that these fantasies don’t include my son.  I don’t dream of taking him to the park, to the beach or to visit a local ice cream parlor. When I fantasize about traveling, of going on a vacation, I don’t imagine taking him with me, to look at the sites, visit friends or family, as though i would be carefully watching his wonderment at the diversity of experiences to be had.
Some would say this is realism, but for me, this is where I concede defeat. Where my enthusiasm and desire to create a supportive environment for him fail in miserable, devastating fashion. I don’t tell myself, ‘it’s not your fault’, because where is love, if I could be so callous as to put myself above my son’s experience.
 And I absolutely cannot think about what my son, nearly seventeen years old, would normally be going through in his teenage years, if he wouldn’t be caught in the limbo of a six month old child.

But the fantasies have made themselves a nest in my brain, as though I seek escape from the relentless worry, the physical care that sees barely a half hour respite in between wave after wave of need. And the belief that there should be no other existence, that there can be no other existence, sets the stage for a self-made cage, the barriers that hold you in, made stronger by your desire to escape them.

Yesterday we lost one of our dogs. She was nearly nineteen years old, but until recent months in unbelievable shape; a fine reflection of her exuberant and tireless athleticism.  The slow dying process was devastating to watch, until I finally relented and asked a veterinarian friend to end it.  Those last days I found myself saying, ‘please, let it end’. Words that I spoke for the first time in my life two years ago, overwhelmed with pain, watching my mother in the death clutch of ALS, as it mauled the last remnants of a sweetly remembered life.  How is it possible to stand with dignity in the face of death? I know the answer. It is to not be concerned with The End. But death does not frighten me, in the least. It is what comes before death, the dying that makes me sick to my stomach.
As you can see, my resistance to these matters has waned, while I tell myself that I am making peace with my increasing shortcomings in caring for my son.  But I have to wonder, is it because of maturity? Have I finally learned those ‘great lessons’, through my experience of caring for my son, who was born without a chance, with the only certainty being that children so afflicted live a very short life? I’ve,  ‘come to terms with it’?
If I have, I feel I have lost. Segev's fortitude is legendary and without it we would not have made it this far. But my rigor, my naively ignoring others’ experience and intuitively countermanding accepted medical knowledge (luck has gone both ways) while creating a dissonance with the outside world has also served us well. In short, I have always bizarrely felt that if I accept reality, I have nothing left to gain. My vision is seemingly far removed from what many would deem realistic.  And since frenzied over-achieving is part and parcel of who I am , I  must consistently question how much of that is boon and how much is bane to my son.  If only this were a sanctioned event of some sort, an athletic event where each time you would be set against an earlier version of yourself, and the accolades could be mounted on the wall or displayed on a shelf. I could live by such a euphemism, if it were true.

Much more important is how Segev is actually doing. Here, there is nothing new to report. “How is Segev doing?”, someone asks. “The same”, I answer. “Well that’s alright, that’s positive then. Good for him.” It’s moments such as that that I would like to ball my hand into a fist and throw a hay-maker right filled with the frustration of it not being alright. But that’s my problem, that I cannot discount the potential for catastrophe in each of Segev’s crises, that I include it in each moment, each stertorous and staccato breath, each seizure and cry from pain, each time I struggle to ease the profound pressure slowly crushing his spine and lungs.  You see, if I didn’t incorporate the fear of that slight shifting of the scale, the very often experienced slide towards catastrophic events, I wouldn’t be able to muster the resolve to continue to do battle. And yes it is a battle, no other call-sign will do, no other description will allow even a small sense of victory as when you declare the battle won.

So Segev is ‘fine’, he is ‘as he is’. With pneumonia, on antibiotics that don’t work, with none left to try. He is ok, because the intense paroxysmal episodes of pain have diminished thanks to the addition of three analgesics and a better understanding of how I can apply techniques to lessen the impact of his collapsing spine. He is fine because he still smiles occasionally,  less, but it’s still there. He still melts in your arms when you hold him, stroking his head.  

But what haunts me is the fear that I am losing my resolve; that overwhelming fatigue is no longer a suitable excuse; that my mind, in searching for a last bitter handhold out of self preservation, has exhausted my will.  
But still, I never need to feign excitement when I introduce him to his pal ‘froggy’; not the fifth time that day and not the tenth time. I am happy to see that glint in his eyes as they make their way, not always in tandem, to peer at those great big orange eyes, the acknowledgement that lies therein, knowing my excitement, praising it even, all the encouragement I will ever need.


  1. If you are present, if you let yourself enjoy the thoughts of getting away without allowing guilt to intercede, you may find respite without guilt. We all deserve our thoughts and should be grateful for the ability to have them. Wishing you all the best.

  2. I am so blown away by your ability to always articulate the complex nature of emotions we go through raising our exceptional kids.

  3. Profound ambivalence is completely understandable.

  4. Your Article is amazing and waiting for your new article