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.