May 16, 2014



Over the last year my experiences have shifted me slightly in regards to children with severe disabilities (in that social paradise, The Netherlands, such children are referred to using both the unwieldy, though not flamboyant, term, ‘Severe multi complex disabled children’ as well as the antiquated, Easter island monolith of, ‘handicapped’) towards what I would assume to be, are the outer fringes. It seems I may be one of few, to freely use the word ‘extreme disability’ to describe the condition of my son and similar children.

It’s hard to find such similar children on the web, whose stories are being told; obviously the vast majority of ‘special needs’ kids are much less affected (or if not, reside in group home, ‘hostel’ or institution), and so few parents find it useful to write about their child after they are gone. Perhaps Segev will be the first in the world to outlive the condition of Ohtahara syndrome?

The impression I’ve gotten is that most families live only vaguely with that sense of dread of extremely fragile life, concentrating on the moment, small victories, smiles, and the effort of dragging normalcy by its hair, kicking and screaming, across brutal months and even years.  I can still recognize normalcy when I see it, now sixteen years onward, sixteen unexpected years. Years where fear has never left the room, nurtured on a healthy diet of mishaps, crises, sleep deprivation, lack of support and an overactive, caffeine stained brain. 

But when I see normalcy in the lives of my neighbors, of the village I live in as I, ‘just like them’ trudge to the post office and check to see if there is something other than bills and advertisements waiting there, exchanging good natured anecdotes at the checkout of the convenience store and I see them walking off again with what seems to be a rather unnatural spring to their step, then across the road children, lots of children, playing in the demarcated grounds full of swings and slides and climb-ups, I see it and it is akin to looking at an aquarium.  Somehow I feel connected to the fish. I think, ‘there must be a way to communicate with them, no?  Well, one day I’m certain to figure this all out’.  But I haven’t figured it out yet, nor will I, present as I am in this life within a life.  For me there will be no integrating the absurd with the mundane. There will be no feeling of ‘just being’, as in going to a coffee shop or the cinema or the beach and sitting with friends to chat. 

Not while I could be doing something for my son instead. Not while I know that even though it is my one day off a week, I will spend it hunting down clues, researching specialists and new knowledge, collecting medications from two different pharmacies and organizing the procurement of equipment and supplies Segev needs, (or just recently, meeting with social services, finally, after a 12 month wait, gleefully, knowing that finally many hard battles have been won; to hear from social worker and psychologist that yes, finally hours of assistance that had already been authorized two years prior will result in the placement of a caregiver, for the first time ever, introduced into our lives but to find that, allocated 15 minutes, we spend an hour talking about why, ‘no, thank you’, incredulous, ‘but I don’t want to put my son into an institution, no, no thank you’ and, wasn’t this meeting about allocating funds for my boy? Flabbergasted stares. ‘No, this meeting is to authorize putting your son in an institute. Don’t you want what is best for your son? After all, how long do you think that you can you keep this up?’ I am walking to the door, I look back over my shoulder and say, ‘To the end. To the very end.’)  Not while my mind has been warped by years of voracious anti-sleep and finally, finally the unbelievable, deniable but believable and logical diagnosis, of depression.

Naturally my line of sight is near a fringe, as you remember, that PICU nurse, (never contested by the way) while my back was turned, (as though not able to hear with my ears turned round) after standing next to my son, suctioning him when he needed it, soothing his pain, wetting his lips, massaging his abdomen for 17 hours, she whispered, ‘He’s some kind of fanatic, he’s obsessed.’ Why my dear, what a lovely compliment!

I’m not alone in this madhouse where the outside world really does appear a cacophony of mindless prattling, intrusions and obstacles one simply does not have the strength to overcome. The cliff-climbing, without safety ropes, barehanded bloody inching up the rock face, this we can do. But going to the post office one must pay attention not to shuffle one’s feet, or hang one’s head, even though the effort seems ridiculously out of proportion, all the more so since everyone else has a bounce to their step, even the eighty year old grandmother picking up her great-grandchildren at the kindergarten.  I still have my memories of kindergarten intact. Sometimes going back there, looking once again through those brilliant, lively and curious eyes is what gets me through the day. Because remember, my son’s days are not measured in good or bad. They used to be, but now, I’m afraid, good and bad are measured in hours and often respite simply means that he is finally resting, sleeping. Whether out of lethargy, neurological stupor, medical stupefaction, cannabinoid haze or finally relenting pain, he is quiet. If it weren’t for the fact that a seizure will wake him in half an hours’ time (again and again), I would try and nap, catch up a bit. But now that he rests, the intrusions must be seen to. Bills paid electronically, paperwork updated, government agencies placated, rent to be paid. Left to their own devices these intrusions tend to gather muster and you can hear them scratching at your door until it becomes a banging noise that is deafening, even though your neighbors won’t hear it and closest family members won’t hear it. Only in cyberspace can they hear you scream. But, no, not even there.