April 29, 2015

I've returned to exercising. I have a stepper now and  I make sure to get on it at least once a week for up to fifteen minutes (woohoo!). A lifetime of exercising and hiking, martial arts and motivation, reduced to this. A middle aged man, overweight, smoking, large swaths of memory erased, barely in love with life.
But before that, what shook me to take some positive steps was that the fainting started. The worst case was a Friday, recently. I tried to crawl to the bathroom at 06:30, thinking I needed to vomit. I woke up about half an hour later on the floor of the shower stall. I needed to call someone. Segev was with his mother and so were his brother and sister, but the phone was in the living room. The distance from the bathroom to the livingroom is about six meters (20ft) but as I slowly raised myself off the tiled floor to a half sitting position, I wasn't sure I could make it.

March 07, 2015

O Savannah! Savannah, I knew you not
but for the tales of brave end to many adventures.

And your quest, an explorer of love
to clasp
that wisp of fairness
that bond above.

A spate of garbling cries, laughter from which we die,
a sentence of truth, where life spat out lies.

The captain has thrown us on the rocks
Though tugging wind yet no horizon near,
he lambasts a sweet sound, like a voice or melody,
slowly losing all its fear.

I fear naught, I fear naught.





My friend David Bordon has walked a nearly identical path to me in his life with daughter Savannah. I imagine us walking a country path, many different trees and flowers, insects and odors. He seems to know the path better than me and more often than not is a step ahead. But here our paths diverge and when I meet him down the road, it will not be the same. But, wherever there may be a gap in our coincidental experiences, it is bridged by a bond one shares, that exceptional bond of unimaginable, undeterrable love, for your vulnerable child. The absolute utility of love lays its bones bare with the loss he now suffers, the unexpected passing of his daughter just two days ago, March 5. Words mean little and thus David gives us but a few words, succinctly drafted, of the life together that has ended. I know that life deserves far more attention, than he can provide at the moment. But more will come, to move us to understanding, when the time is right.   Still I cannot speak for David and thus I cannot do justice, to the depth of the connection he knew. More important though is the beauty with which his daughter Savannah expressed life, leading to unimagined joy.  A life ostensibly placed in her parents good keeping, and their hands, loving and strong, were filled to overflowing. I cannot imagine how a human being is still held together with such an experience unfolding. I am in contact with very few, my circle is nearly hermetic, but half that circle is comprised of parents who have lost their child. 

Often the inevitability of it all, makes it that much more bitter. I cannot speak for David but imagine that anger is not the emotion he is seeking now.  The only thing I can imagine he knows, is that the beauty of the life, as devastating as exquisite as they lived it, was more worthwhile than can ever be put to words. 

February 12, 2015

With the coming of morning, all fires die out





As some know, I am on call twenty four hours a day, seven days a week. For the last five years caring for my son has meant that about 90 hours a week I am no more than two arm lengths away from him, night and day. This is due to the fact that five years ago I made the decision to significantly reduce the amount of time I physically take care of him, as I was no longer able to properly function under the strain of 72 or even 96 hour shifts. Help from outside, whether family, friends or healthcare workers was not forthcoming. Those hours are now once again in flux since Segev's condition is certainly not improving

January 10, 2015

What you hear on the winding path



Facebook has reminded me that I have not posted an update of Segev for 41 days. What is there to post about, I wonder. A moment’s smile? A distant dream? While this blog is merely an empty echo with the occasional instinctual spasm of pride and hope.

What I have to report is that pain and stupor have become my son’s mainstay. That pneumonia is not measured by the number of recurring events but rather as a constant permutation; either mild, our 'staved', or ‘severe’. Presently, once again it is severe and intravenous antibiotics are little more than a bet placed on the roulette wheel. So it might surprise you then to note, in the following paragraph, that I do not feel weighed down by the future, even if the ‘F’-word, Futility, creeps ever closer to the entrance of my vocabulary. I honestly did not believe, with the experiences of this past year, to see my son alive in 2015. But on to the next paragraph:

December 29, 2014

I, the judge

This post was originally planned for publication here on the 18th of November 2013 as a farewell to blogging. I offered it as a guest post to 'Bloom' blog where it was released in somewhat simplified form.  Here is the original entry.






I have to wonder sometimes at the audacity with which we are judged by others. Of course it happens to us each day and we are even guilty of it ourselves but nowhere can it be more alarming then when we feel our children’s very lives judged because they are severely disabled. As a parent providing round the clock care for my son for over fifteen years there are many constants in what has become our tiny, nearly hermetic life. Unfortunately judgment is one of them.