My son is not normal. Far from it. As a matter of fact he is so far from normal that there are few words which can describe him. Nevertheless I try. I want to find the words which can describe such an odd existence of twitches of muscle that build to crescendo and crash like the waves breaking on the shore. And the quiet after the storm of each major seizure. The endless surge of hundreds of thousands of seizures.
August 01, 2014
Segev is once again on antibiotics, he has pneumonia. His last episode was just one and a half months ago, but he is responding well. The side effects for my son have been so severe in the past that it has influenced my decision, whether to start with the medication or tough it out, as we have done so, so often, using instead a combination of abundant and intense chest physio sessions, nebulizer therapy and herbal medicine.
July 12, 2014
As a child, you could say I was a bit superstitious. When eight, walking along the sidewalk to school I would always make certain I didn't step on any ants because I thought that it could bring bad karma. I've changed my views about these kinds of things in the last forty years but one kind of superstition turns out to be real and displays a tenacity which is dumbfounding.
July 01, 2014
My son is having a rough time of it, again. But there are moments when serenity spreads her wings; his face is relaxed, a small but potent smile comes on and his eyes sparkle like a kid seeing Disneyworld for the first time. I find, for lack of a better word, a sense of grace in these moments of reprieve from his increasingly frequent discomfort. They are even as predictable as they are significant because finally there is something concrete and positive that comes by way of my own hands as I work to massage his back in preparation, then work harder still but with delicate precision, to decompress his spine and see him relax completely.
May 28, 2014
My daughter is coming home. At age eighteen (having finished secondary school with high marks) she was due for her army service, but since it is possible to postpone the induction by a year through a special program that allows one to gather experience, often in the form of volunteering to help the community. She chose to work as a ranger in the nature reserve at Ein Gedi which is located on the shores of the dead sea.
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.
April 23, 2014
March 08, 2014
|with brother and sister|
Today is a milestone of epic proportions, though I find myself reticent in celebrating the moment, as these last months have been quite hard on us all while Segev still remains with pneumonia, already since early December.
February 24, 2014
I’ve written about this before but it simply keeps coming up so I feel the necessity to briefly touch on it once again. It goes something like this; whenever I have a conversation with another person about my son and they start to get an inkling of how extreme his level of disability is the reaction is always the same, I am asked, “But isn’t he suffering a great deal?” The related variant of this question is the second most common; “Is it really worth it?”, the idea being that the effort expended is futile, without recompense.
I have been asked those two questions, and only those two questions, whenever my son has come up. Not, "What does he enjoy doing?" or, "How does that affect family life?"
February 22, 2014
If he could speak I might not appreciate what he has to say about the way in which we see life without much clarity, not to say, in morbid disarray, since pureness remains an enthralling concept, where we place our hopes there so that we can rise above the mundane. The disarray I mentioned is a state of mind that separates two worlds, namely his and mine.
January 09, 2014
We call this a journey, because a journey is always quite an undertaking. And true to the nature of journeys, it never leads to known places already tread, or to casual experiences already had.
At the end of the journey we look back and marvel since had we known at the outset what was in store, surely we would have forsaken the task, with its onslaught of misfortune, the weathering of misery and the triumphs that elate. For some the journey continues and for others the time has come to say, ‘I have traveled as far as my feet can carry me and I will rest here by the side of the road, on this tree stump, while you carry on, with the memory of our travels to sustain you on the cold winter days’.
August 05, 2013
August 01, 2013
I was caught sleeping but fortunately there were no ill effects. On Sunday I took Segev for an x-ray of his pelvis and right hip. Friday he began screaming from pain whenever his right leg was moved or I held him on my lap.
Both his left and right hip are dislocated. Since he sits in his wheelchair with a very strong decline as well as tilt, due to his massive kyphosis, there is normally very little weight on his pelvic region and even less when he lies on the couch, supported by a myriad of pillows.
July 21, 2013
In 2006 I lobbied a neurosurgeon to implant a vagal nerve stimulator in my son in order to attempt to better control his myriad seizures. The ketogenic diet then was in its infancy here in Israel. As a matter of fact when I had approached a pediatric neurologist on the matter his answer had been, “well if you want to occupy yourself with voodoo, you are on your own.”
July 12, 2013
When I go to sleep at night I cannot throw my clothes into the laundry basket or put them down in simple disarray,
But place them well within grasp, separate and on display.
For the call can come at any hour to bring about the task,
That moment of eternity, while I drink its empty flask.
A few simple words hushed, rattling the mind with increasing urgency,
dread arises and with a flash I am up, “come quickly, it’s an emergency.”
June 24, 2013
There are times when words are the least of our worries, when we concern ourselves with the finite and tremble.
June 18, 2013
So many years on my part of not watching television (I don't own one), never listening to radio and newspapers frivolously scanned for headlines while waiting for coffee to-go and the further censoring of information by directed and specific searches on the internet and yet the writing is clearly on the wall.
"Stick to individual things", was some good advice I was given lately. I was told to compartmentalize in order to counteract that natural inclination of mine to make connections between disparate issues all the time. A kind of anti-reductionism, if you will. But being an intuitive this makes perfect sense since intuition is about what is around the corner, out of sight, working on the puzzle with islands of pieces instead of dutifully building the linear edge first.
June 12, 2013
Taking care of my son in 48 hour shifts (it used to be more) is not only draining because he can never leave my sight and there are such a multitude of tasks to perform but especially so because the pauses in between, when I can sit with him idly, are short and irregular and thus do not allow for continuity of normal deed or thought.
June 05, 2013
The days of our lives
that naturally present a certain measure of dullness as in between providing moments of physical and medical therapy, playful moments, dramatic moments and the inane seizures which come irregularly, without warning but with me ever at the side of my son, diligent, ever ready, you consider your changing (evolving?) identity.
May 30, 2013
If it's done slowly
there is more of a likelihood that events will fall into place. But Sunday morning, as our planned visit to Alyn hospital in Jerusalem was underway, I stood helplessly at the garage waiting for Segev's van to become available. The engine overhaul complete I was still required to test drive the car before the trip to Jerusalem. The delay meant we finally arrived at hospital several hours late for the slew of scheduled appointments.