On a personal note I underwent a root canal this morning and then went to pick up Segev from his mother’s. The last time I had work done on my teeth was 35 years ago, when I was eleven. Besides the apprehension I felt about the procedure, (justifiably so since it hurt like hitting your hand with a hammer full swing) it has been the sense of time that passes which struck me as painful. Most of our experiences seem devoid of a connection to time as though they function without connection to shape our lives.
One of the great common denominators in our lives is the apprehension that we live with, as parents of such severely compromised children (and child/adults).It can clearly be overpowering. For me it will manifest as outright anger when I am very tired and melancholy when I am not. Most of the time I am tired.
Everything about time now has a special meaning. Especially making the most of it. I thought I had understood this fully but the continued play-dates with perilous ill health that Segev experiences and the effect the death of my mother, at age 66, has had on me cannot be overstated.
Mentally I feel much less tired than what you could read in my last two or three blog posts, where things really seemed to come to a head. The sense of urgency has dissipated somewhat and yet I feel more purposeful, more conviction. I attribute this to regaining a sense of personal ambition. There are things I wish to accomplish and there is that second sense, besides the overwhelming apprehension, of helplessness,which has undergone a transformation.
All of this is possible, I realize, mainly due to the fact that the perilous, and yes, disheartening condition Segev was in from the 30th of January and until March 16th has not only subsided but that he has shown reactions which I truly believed we would not get to see again. With good cause.
His serious bout of flu, which lasted over two weeks during which Segev deteriorated into cyclical vomiting which lasted another three weeks. For two weeks he had fever and was non-reactive, constantly on the verge of dehydration due to added daily diarrhea. At one point, with a standing recommendation from the pediatrician to go to hospital, a cardiologist was consulted and as a result of the ECG, done because Segev’s heart rate was 150, twenty four hours per day for ten days, his opinion was that we needed to rule out pulmonary embolism.
During this I had to stop his ketogenic diet, an important medical aspect of subduing Segev’s constant seizures, due to the crystal formation in his urine and his destabilized electrolyte balance, caused by the potassium supplement he takes in order to reduce the amount of crystals the diet causes, which lead to kidney stone formation. The acidic nature of the diet also forced me to remove one of his long time epilepsy meds, also known to cause acidification problems.
So he has dropped two of his four medications and spent literally nearly six weeks semi-comatose, often reacting only to mysterious pains or, as was the case when blood was taken in what turned out to be the physician’s ‘fishing expedition’, not to react at all. He vomited his way, up to six times daily, through three weeks, an extended part with high fever and ten days straight on 4 liters/min. of oxygen.
And then came a slight smile. And a voice that moaned a little softer until it became an exclamation mark as though to say, ‘hey, where have you been all this time!’ And more smiles and stretching as his body language slowly returned and lifted my spirits when I thought, truly, no more.
Added now to his regular shoulder dislocation, which has come to cause him more discomfort, and his hip subluxation is a new subluxation of the sacro-iliac joint. He has cried and on more than one occasion I was able to reposition it and then his reaction was instantaneous. In the middle of crying a smile spread on his face as though I had administered some wonderous narcotic and it had begun to take effect.
These problems he has, which are increasing are also a function of time. The wear and tear on his body is accelerated and closer to that of a 65 year old man, rather than a 14 year old boy. Extreme living at its most extreme and yet for the most part Segev doesn't do anything, he just is. He is that boy who is heading towards an uncertain future and time is not on his side.
I try to fill that time with a few sparkling moments but it is part of the kind of microscopic life, difficult to recognize when contrasted to my other children or even if you are able to take your son or daughter out or if they are able to go to some form of educational institute. It’s simple things like his Pluto doll saying good morning to him, or giving him his third or fourth shoulder treatment which also helps to calm his erratic breathing. Such simple little things fill the day and then I try a little more. I try to talk to him about the color of the sky or how the sun feels warm but his eyes close and he is off again. Subdued by the medications or fatigue or some stygian manifestation of his immense brain damage.
While he is quiet, perhaps sleeping, his breathing can still be labored. Oxygen might not be necessary and the treatments, although a joy for him because he definitely recognizes the effect, require quite a bit of pressure and would thus waken him, causing a seizure. So so much time is spent on standby. Especially when he is ill, such as was the case these last six weeks, watching him and often not being able to do anything more. Waiting to see if he pulls through, swooshes towards wellbeing with the stroke of the pendulum,in all its nerve wracking glory, tiring, stiffening your own body as you are put on hold. Not for a few hours. Not for a few days but for weeks. Going to bed knowing you will sleep only for one hour at most and often merely catnaps of twenty minutes. Waking to hear his troubled breathing and simply not having the physical strength to get up. Or at least your body, smarter than you, saying, if you get up now, what will you be able to do later?
But despite this he gets better, at the darkest hour, there he goes but by the grace of an inner force which will not let go. By teamwork, by luck, by an innate strength. How many times I thought to myself, ‘that’s it, there’s no choice but to take him to hospital’. But I’ll take my 50-50 here at home. Don’t think that this is some kind of Christian science, though. Not only because of experience and treatment skills and medical equipment at home. During this terrible time I took him to see two pediatrician’s, twice. Three sets of blood tests in addition to constant monitoring of oxygen and blood sugar. Three urine tests, and the aforementioned ECG. I took him to a senior pediatric neurologist in hospital all the way in Tel-Aviv and a chief pediatric gastro-enterologist, also in hospital, close by.
At the gastro consult (because of the paroxysmal episodes of pain and screaming) I suggested (for the second time) that instead of going in through his throat with general anaesthesia they do it through his gastrostomy hole. The first time the physician said, ‘that can’t be done. We don’t do it.’ This time he said, ‘I think we can do that’. Then off to speak to an anaesthesiologist who asked many questions and listened attentively to Segev’s past experiences and troubles. He came up with the following protocol: two anaesthesiologists need to be present. One to administer a diazepam-like narcotic (valium), the other in case things go south, meaning a seizure or wild flailing by Segev or breathing difficulties so that he can be intubated. An operating room needs to be booked and a bed reserved in the PICU. All righty. I’ll think I’ll pass. I wanted to know that everything is alright in Segev’s abdomen since it’s known his nissen fundoplication released years ago and allows him to vomit so easily and he has irritation around his G-tube because the way his body has grown his ribs now press down on it and also since longterm consumption of the medication ‘nexium’ can cause some severe changes in the lining of the stomach. But now, if I go through with it, I will be excluded from the procedure. Meaning that I need to rely on physicians who have never seen Segev before to judge his reactions and decide in appropriate fashion if his reaction warrants intubation.
Segev is complicated, as those who have read here for a long time, well understand. It has been a long time and yet new challenges arise continually. While some old ones fade away, some do not, accumulating.
And that is a function of time, which has the knack of wearing us down if we don’t pick and choose our battles carefully. I have never felt I have the luxury of doing that though.
In the film that I made of my visit to my dying mother I talk about how there are so many things that could and needed to be done to ease her suffering. Little things like addressing an oral abscess, massaging her swollen feet. Things I did and that visibly helped her. But staff and family picked and chose what seemed right to them, what was visible to them. “But I want it all, for my mother” I say in the film. There was time and there was ability but not the combination of focus and desire.
It’s similar with Segev. Now I have begun to worry about something which I long ago put to rest – mortality. Specifically my own. Like Phil Dzialo’s concern for what will happen if his son outlives him, I was struck with the thought, who would care for Segev like me, if something happens? I became acutely aware of the need to reduce any risks that would better the chances of something happening, such as driving extra carefully, not being in a hurry. But the answer to the question? No one. But I learned something from my mother, who long ago said, ‘never mind Eric, my body is done - but my spirit shall always be with you’.
I’ve had to accept that and it has made me calmer but also more reluctant to talk about Segev, share what goes on in his life. Something well visible in my last few postings. As though it was no longer relevant, as though the work had been done. But that is just fatigue talking because the easiest thing in the world is to withdraw, cross your arms over your chest and mutter, ‘the world doesn’t understand me’.
Pacing mmyself is what I have always been missing. Full throttle is not an astute way to undertake an endeavor which should necessarily be seen as a long term project. The living of a life, no matter how short, cannot be made more worthy by elevating the intensity to the highest possible level.
And yet then my son comes up with a new seizure, a new complication, a new record for staying blue, an extraordinary crisis which demands stressful measures. I realize though, that with fourteen years under our respective belts, that this is the stormy relationship he has with life and that it naturally leads to an accelerated degradation of all his systems. It’s a function of time.
Fourteen years of hospital stays and seizures. You should have seen the look on the neurologist’s face when I wheeled Segev in. The one whom I hadn’t seen for a number of years, who years previously accused me rather candidly of not understanding the nature of seizures but then also admitted that he had been mistaken, not I.
It was a look, clear as day, that said, ‘I didn’t expect to see him again.’ And I said as much and he nodded. Fourteen years of pneumonia’s and paresis, of darkness and isolation. His isolation, in his tiny little world which has me hoping he dreams at night of flying. Flying off to experience any of the myriad things he never has nor never will but that a mind can conjur in lieu of that experience. Experiences which allow us to grow. But I cannot possibly hope to understand Segev's journey. In the mean time I try to scamper about a bit in his place. Not actually to far-off places, but to wherever there is an ear which will lend itself to his story. A poor substitute, no doubt.
Fourteen years is a function of time and that led me to say previously there will be no birthday post, no reminiscence of greatness achieved. No polemic foreshadowing of battles to win. But you know, that as far as Segev is concerned, I do celebrate his being here, but it’s more of a day to day thing.