Eventually, out of interest but also from respect (knowing so well the difficulties families face raising severely disabled children) I read the entire article. Opinions may not matter, but discussion does, even if it is inside our
own heads where, rarely, change happens and a different perspective is
gleaned. Perspective, though is not much more than a fancy word for opinion. I looked for a place to comment, a few sentences to convey my concern as parent of a catastrophically disabled child, but there was none.
"There is a friend who has lost his daughter. She was
fifteen. In the afternoon, in the quiet of his study, (where have all the terribly
comforting noises and effort of care-giving gone? The rustle of plastic when
opening a new syringe wrapper. The pop of a medicine container, the cling of
stirring that medicine in a glass. The distrust in life, the pride at her
commitment to renew herself each day) he broke down in tears. How could he live
his life, doing justice to all the sacrifices, to honor her short but exquisite
life? How could he go on without the meaning that caring for her brought? He
realized then, that her sacrifices were not in vain, since she lived a
beautiful life. A very difficult one, but filled with laughter, drama and the
mundane. Like any other. ‘God I loved her’, he thought. But then the obvious
struck him, that he loves her and carries not only those experiences
inside of him, but her essence. Yes, she is gone, but her meaning isn’t. His
very bones breathe her existence. Despite the appearance of limitation and
suffering, he chooses the positive in life, because that’s how they lived it.
His life, his intention, his meaning."
excerpt from 'Before the god of the fields', an upcoming novel.
In a life such as that which my son, Segev, leads, it is often the silence which is the most telling. When seizures happen, which have once again become pressing, you see the issue right in front of you. Maybe there is something you can do, increase the oxygen, suction, support his flailing arms (even though they are tied into elastic bandages to minimize the damage), wipe away the tears. Then comes the quiet. How well will he recover? Is the next one on the way? Or more pertinent, what caused it this time; a build up of neurological tension from frequent, excessive pain? A blockage in his lung? Do I reposition him in his chair or move him to the couch where he can lie more prone?
He is twitching again today. It starts and goes on for
hours, eight, ten, twelve hours perhaps more. Even valium cannot subdue it and
when he twitches, his hands always, feet and stomach regularly, he hardly
reacts at all. Sometimes he will lazily open his eyes, in a way that you know
he is still partially there with you, but expressionless, just like a nod of
recognition you might give a coworker you pass in the street. None of his
seizure meds help, nor the cbd, not the thc and he sweats constantly, his palms
and feet turning cold in that way, though not from the air conditioner, merely cold
and sweaty for their own accord.Usually
preceded by a massive clonic-tonic seizure, the kind where he turns red and
then blue, despite oxygen piped through his nostrils in a steady twenty four
hour stream of ‘wash-unk’s’ from the oxygenator’s electric pump. And an
overabundance of phlegm clogging his delicate and nearly disembodied lungs,
more than ever. Clearing his lungs enough so that twitching will stop. But the
pressure on the lungs from his spine on one side and the diaphragm, lunging
upward from the other, keeps the status quo, the memory of hope; I’ll give you
a few days of this, and you take a few days of that, and together we will bludgeon
consciousness, tit for tat.
Miss her every day. The picture of my mother below was taken one and a half years before she passed. She had already lost the ability to speak half a year previously and could no longer walk. But she could still laugh and nothing was quite so important to her as bringing out joy and laughter. She laughed a great deal, despite a really tough early life. Despite her illness. Towards the end she was reduced into kindred, mirror images of my son; paralyzed and speechless, fed through a gastrostomy tube, pain on the outside. While inside the same strength and kindness continued unabated.
Both by lack of choice and by choice, the hours that I am with Segev both as father and caregiver, present unique challenges. The accumulative affect both strengthens and weakens me; being able to see a positive change in his condition, though momentary, is a collusion of Giri-Ninjo that both elates, giving hope but also deepens darker feelings.
Possibly the main challenge I face each day is that I ask myself, how can I love him more? Some days I even wrestle with the issue, while other days I prefer to retreat to my shell. What? What is that you say? How is it possible to love him more? Because love is bottomless, endless.
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.
but for the tales of brave end to many
And your quest, an explorer of love
that wisp of fairness
that bond above.
A spate of garbling cries, laughter
from which we die,
a sentence of truth, where life spat
The captain has thrown us on the rocks
Though tugging wind yet no horizon near,
he lambasts a sweet sound, like a voice
slowly losing all its fear.
I fear naught, I fear naught.
My friend David Bordonhas 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.
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
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: