Smile

At times I write about Segev, specifically about how he is at that moment, what he is enduring and at other times I write down my thoughts on disability and what this life of caring for my son does to me as well as my take on the bigger picture.

Of late, especially since my mother died, I have had much less of a feeling to write about Segev and it is clear to me now why that is. It is something, an element or natural outcome, of describing the life of an extremely physically and mentally compromised child who has a short life expectancy. We are made uncomfortable by it, as I know I am when I read about other children and their hospital stays, their increased need for medications and the ever expanding diagnostic testing, that, though with basically good intentions is truly searching in darkness to understand these most complex of human beings. I read of medical issues, most of which I can understand and quietly read in between the lines of the struggle the parents undergo, most prominently from uncertainty.

We are uncomfortable with watching a person's decline and can find several ways to skim over this fact. While I have been preoccupied with that very aspect of Segev's life from the beginning, using it to find,the perhaps excessive, motivation needed to completely live a role as lifesaver, it is only now, with years of accumulated wear and tear both physically and mentally, after the death of my mother who personified an accepting, positive existence, that I am finding the perspective needed to come to terms with how little I can do for him.

In contrast, I have always been aware of how much I can do for my son. As a father this is very difficult because there can be no real awareness of his needs, i.e. how much he is my son, in need of the connection with and the protection of his father, much easier in regards to being his caregiver because there, his needs fall in line with my incessant attention to detail and my long time career as a professional caregiver. 

Many need not or prefer not, to distance the two aspects of their relationship to their child; they form a continuous whole where cracks develop only when they either suffer tremendously under the strain of their child's condition or they set out, perhaps unknowingly, to push beyond the boundaries of common medical knowledge and yes, medical ego.

Recently Segev stood before the tracheostomy surgery which I postponed in order to assess a larger problem of his diaphragm being paralyzed on the left side, effectively shutting down his left lung and contributing to a host of problems including oxygen levels, stomach irritation, feeding difficulties and pain. In order to get a better understanding of our options for dealing with these issues I went to consult an especially knowledgeable and especially congenial physician in Jerusalem.

The trip was difficult because it was long and I had a splitting headache and Segev requires several activities be done for his care, without the possibility of suspending them for any length of time. During the meeting the physician was rather taken with my solution for having been able to postpone a tracheotomy for the last five years by applying neck braces to try and stabilize his receding jaw and discussed the need to investigate this option for his patients with the attending physician.

His certainty in regards to the origin of Segev's declining respiratory state was at the same time comforting, he suggested a way to alleviate some of the problem with a treatment that I initially resisted,but also disconcerting because I know that while I believe he is partially wrong, there are few if any alternatives. Presently I am in the process of determining whether something, which looks to be a long shot at best, could provide such an alternative.

In this look at strategy though a major problem lies with those aspects of Segev's care where I am merely an observer to his accelerated decline, something very painful and rightfully so. The area where I need to grope in the darkness by inventing treatment techniques or constantly be aware of how his physicality can be altered to slow the decline, such as repositioning him and even finding proper positions to lessen stress on his decrepit spine, to challenge medical assessment and thinking where Segev represents either a tiny little box to certain specialists or a kind of empty, unknown void to others, is where most of my concern has lain these last fourteen and a half years.

Briefly, when Segev was about one and a half years old, still putting aside the idea that his life could end momentarily, I researched the possibility of applying some manner of 'cure' to his brain. A way to, even momentarily, slow down the supposed cascading brain damage his myriad seizures were causing and even further than that, to try and influence new brain cells to form, this time, in a more correct fashion than which occurred during his development. There was a doctor I found in Australia who was injecting stem cells directly into the brain of children with a particular inherited neurological disorder, perhaps with some success.

But of course back then, in 1999, I might as well have been discussing an H.G. Wells story, as novel therapeutic approach, with any of the many physicians that I used to bounce such ideas off of. Stem cells. Directly into the brain, what nonsense. Then it was indeed nonsense and it is unfortunate the Segev would never be one of those children who was born into an era that had an answer to his discrepancies. 

But that was then and since,I have had the honor of watching a whole new world unfold. So many things have changed in me and in my life, but not only my life as Segev has been able to connect to many people all around. There has been a natural development surrounding what Segev can teach which, thankfully, continues and will continue long after he is gone. No mere wishful thinking, but founded in the knowledge that as long as I am capable, dealing with that ugly phrase,  of what is the worth of severely compromised children will be an essential element in my life.

What has not developed really though is Segev himself. Well, I suppose that is why the term, 'arrested development' exists. Still, that is strangely where a great deal of his strength lies together with his ability to create a positive feeling despite the process of decline that dominates his life. The long periods that he lacks any connection to the outside world, living in a semi-comatose state, oblivious even to pain stimulus. But then he springs back, when the hope to ever again see his smile slowly faded to less than a glimmer over weeks and weeks of stupor.

His moments of 'being there', unchanged by mood or expectation, untouched as he is with any element of ego, is a severely humbling experience all the more once you  have seen him rebound from an episode of excruciating pain, of hours duration, with a smile. 

That is why his smile, just once, can sustain my efforts, both physical and mental for the entire day. Because I do know what stands behind that smile. It is the very essence of our life force, it is an indomitable spirit who is connected to the source, uncluttered, unfettered, not weighed down by all of our complicated manipulations in our interactions with others nor ourselves. That smile is saying, 'this is life, take it.' in all its meanings, folded into one.

But if one day, I never see that smile again, I know that it was there, when it was supposed to be there. It really existed and it indicated something beyond the moment itself, a distillation of something eternal, something that goes on even when what was visible is no longer visible. 

More on causality

Something has been troubling me of late. And by lately I mean the last forty years or so. There are some things i want to say that I know won't be very popular but then I believe many of the things I say raises a few eyebrows or make people shake their heads. I'm perpetually swimming against the stream and coincidentally I've been fighting against my own self for a very very long time. Well things are changing.

I've been taking care of my son now for well over fourteen years, an intensive no-holds barred encounter at the edge of my sanity. My son is not to blame for this, I am. Though in my feeble defense i offer that I feel I have no choice in the matter; it seems to me to be the only option. Muddying the water further, I care for him much less now than, say the first twelve years when I had more vigor, more anger to put into my endeavors. 

Nowadays I have much more understanding of how I need to fit into my son's life, after bringing the entire escapade close to that point of no return; where shadows jump out at us and even simple things in daily life seem to be trolling our very existence. 

I've always pushed it hard, to see what lies at the boundary of my abilities, which have been substantial, to see what it's possible to accomplish when you set your mind to it. That moment of the day as it ends and becomes night and while there are no shadows, something is nearly visible, something that has life.

"The spirit is willing but the flesh is weak", yes, but also the weaknesses of the spirit become apparent at dusk and while it was hard enough to acknowledge that physically there were limits to what could be done, I never really wanted to make a proper assessment of the inadequacies of spirit. Who wants to look at their weaknesses, right?

When I look at how the extreme giving of oneself to a cause has been represented in humanity, whether it be religious belief or personal ambition I see that the world appears well balanced within a framework based on a minuscule amount of creative force, let's say like the 'big bang' and the rest, which is basically a long drawn out decay of what was created. So just as in the universe things are decaying, entropy, those forces are prevalent in the human psyche as well, where the force of destruction is so much greater than of that fragile, ephemeral source-energy, creation. Comparisons can of course only go so far but in looking at the creative nurturing force of caring it stands to reason that it naturally pales in comparison to the prevalence of decay, destructive and generally negative forces.

Taking this a bit further is quite disturbing in my view. Mind you, not disheartening, it just rubs me the wrong way. Because if you look at human endeavor in history we seem to have spent the vast sum of our knowledge and abilities in producing an endless stream of death and destruction. One can argue that this is part of that natural cycle, that destruction in the end also forces the act of creation but the sheer amount of physical and mental effort devoted to death and destruction is simply not offset by the creation of vaccines, motorways, iphones, art, clean running water, because in the end all of these things act rather coherently in order to sustain a nature which gravitates towards destruction.

Show me the money!

Those are my thoughts as I jump up out of bed, last night as most nights, for the umpteenth time, to see my son choking, gasping for air or in the midst of his seizure, a new kind spontaneously making its appearance; the need for suctioning, repositioning, physiotherapy and the pulseoximeter having fallen for the fourth or fifth time from a smaller more normal seizure; all happening last night, as most nights.

This is nothing new and so most will say, where there is repeated occurrence there is nothing remarkable. The ins and outs of human nature. "act rather coherently in order to sustain a nature which gravitates towards destruction", really now, Eric. 

Reality. I don't take kindly to reality. I prefer my fantasy world, where I take care of my son and others are on the same page as me. Not because he is my son, as I also take care of other children, offering consultations as a professional and sometimes even as an experienced parent to other parents of severely physically and mentally compromised children. Most are so far away that I say, what a great boon this electronic medium is. Offering support to others in what way that I can prior even to my son being born.

Where is the enormous and overwhelmingly sufficient effort of caring for one another? Where are those seemingly endless energies that we apply to killing and hating and hurting? Oh it is so complicated though, isn't it? People believe they are protecting their loved ones when they go to war. See others as threatening, as the aggressors. We all have blinders and our minds can justify anything. Anything at all.

As I said it is complicated: from war comes industry and discovery which feeds discovery bringing about mechanics, medicine, better control of our environment, better protection from the elements.

Bang, Bang! You're dead!

But at what point do we say, alright then, we've created this world, now let's go about working on those undeveloped areas of our psyche, we have the luxury of being able to nurture now since as a species our survival is no longer a matter of recourse.

Ahh, but our two fold nature, where nurturing is hardwired, is actually the impetus for much of our more expansive, aggressive behavior, isn't it? You can't have one without the other. And balance is a dynamic thing, always searching, creating forward motion as the energies of creation and destruction play off one another. How could all the vastness of the universe come from one tiny point and yet point of creation and vastness form two sides of a balance scale.

It seems to me that you have to reconcile with the fact that human nature is something so complex, sometimes arbitrary, more often than not destructive, in order to appreciate that beautiful little sliver of non-partisan caring that sometimes, not always, get tapped into by parents caring for their severely disabled children.

It seems we can never have what we want; that establishing balance in our nurturing lives also requires we nurture ourselves. We can't be whole and give our children a perfect existence. And by perfect I mean living a small, reasonable little existence like the countless people I see taking walks with their normal healthy children. I also have normal healthy children who came before my son Segev. And I paid close attention to them and to being with them. To enjoying their presence and my time with them. Watching them develop from simple life force into a complex functioning entity with a unique identity. I stand in wonder of that,albeit absolutely mundane, experience. I have no sense of personal accomplishment in this respect, but have always felt excited to have these other people around me. I wish I could have seen more children enter my life, but circumstance intervened and changed a great deal of things.

Also out in the world, on a macro scale, circumstance, environment and conditions play an important part of shaping people's behavior. There are examples of shining lights in the darkness of humanity that have been registered in our brief history as a species on this planet, where adversity brought about selfless creation, as part of a choice, an exercising of will. They may be few and far in between but I have even witnessed some of them myself.

When I hear or read that a child, whom i have grown to know through electronic medium or personally, has passed away due to the overwhelming complications of a physiology ill equipped to deal with our world and look at how the parents have done their best to create a sense of normalcy in their extravagant, overly generous family life, I don't think, 'oh how terrible, another light has gone out'. I think, there is light for those that have eyes to see.

So I have been thinking about what kind of place my strange little son has in this world, where his very decline represents the destructive forces of nature, like light cast through a prism broken into different colors. Just business as usual? I don't think so. I don't accept it. After fourteen plus years of breaking myself on the grindstone which is his inevitable decline, I still won't accept that that is 'just the way it is'. My own little fantasy world then, where what we do now, the spirit we show now in caring for our children, becomes the knowledge of tomorrow.

Choice as anger management

If the choice were mine, I would take care of Segev every day. Of course I would have to retire from my profession of the last 22 years, but my tiny little life has been whittled down to a bare minimum and so I would take that step if offered. So far I haven't had to make that choice.

I have slowly been doing the opposite though. It all began after the separation from his mother when Segev would mostly stay with me. There were week long and two week long vacations abroad with the children while I stayed home alone with Segev. My choice. Eleven nights I believe is the longest period I did that, completely alone. Back in those days I was able to.

I keep looking back at what I was able to do but not in order to feel pride at these kinds of preposterous accomplishments but rather to see how things have changed, now that I am no longer capable of doing them. How the balance started to shift. Instead of caring for Segev in sessions of four days and nights in a row, alone, it became three days and nights and then even only two consecutive days and nights, with his brother and sister also staying over. From the two week vacations it's eventually come down to five days, four night holidays that I am able to take on the responsibility of caring for Segev alone. Needless to say, I cannot work during that period. 

I don't go on vacation but I want it to be clear that this is not to raise the pity meter. As far as I'm concerned this is my choice. I don't go "out" after a full day's work, I rush home to be close to Segev, to check up on him so that I can sleep a little better at night. I even don't go to the beach to relax because the beach is always 45 minutes away from Segev which presents unnecessary risk in case something happens to him, as has happened on numerous occasions... Still, my work is always an hour to one and a half hours away from Segev. Here the choice is clear. Work, literally to have food on the table and a roof over our heads, or be closer to Segev and live off of handouts.

Once when I was six years old I drew comic books and went door to door selling them because I knew my parents didn't have much money. I was worried I was a burden on them. I felt I had no choice.

This theme has stayed despite certain inevitable changes, from experience and circumstance but the financial uncertainty because I choose to take care of my son instead of working full time as I used to, six days a week, continues to rattle my self confidence. I've had to literally beg people to help, people who knew the situation and had no financial concerns of their own. No choice.

I've never liked to touch on this subject, it's a matter of pride obviously. When you have to ask your children for their money in order to buy groceries, that is one hard pill to swallow as a father. I could fill pages here of similar instances and detail my woes, especially now when my landlord was kind enough to tell me that he is raising the rent by 25% and that I was very lucky to have such a kind landlord who made considerations for my situation all these years but now, "well, everyone is raising their prices". That's a woe I could do without right now. But a good reason, right? Everyone else does it. No choice?

"You had a discount over the years. I gave you that help, now the difference is being assimilated."  I ask though, if the difference is now being wiped out by the massive raise in price, so then actually in the end, you are wiping out that help, aren't you? 

Deaf ears cannot hear. So yes I'm a little bit pissed off that this is happening now, with everything else that is going on. I have been looking for another place for a long time now, long before his announcement.  Do you know how many apartments have wheelchair access in the neighboring city? I don't, because I can't find any.  Looking for so long that I have gone from looking for a three bedroom place to a two bedroom. From near to here, to farther and farther away so that when the call comes from Segev's mother, as it did yesterday when he suffered a minor injury in a home accident, the time it takes me to get there will be that much longer. No choice.

So I will move to a smaller place, with not enough bedrooms and once again stairs but certainly with a balcony so that I can put Segev in the fresh air, especially in the winter, which helps his breathing. It can't be worse than what I have now where sparks and even flames will fly out of the wall when you plug something in and the roof leaks, the dust is intolerable and the rats are a never-ending infestation. So lucky he let me live here.

You bet I'm pissed off but that's not necessarily a bad thing because at least it motivates me to get things done. 

Things will change and for the better. No choice.

Pain slows you down, makes you tired

Some weeks there appears to be a sense of accomplishment or at the very least that it was well spent in regards to helping Segev. This past week was not one of those. Despite doing the ultrasound and being able to arrange the meeting with the pulmonary chief physician on such short notice, which merely opens the door for far-off adventures of third opinions and another surgical consult, there was little going on besides the notification that the request for Segev's medical cannabis license was not approved.

Then there is the small issue of my back. Normally I wouldn't mention in any detail my own ailments but when the problem becomes a tithe on my son's care, I become quite frustrated. The last two nights were extra difficult with Segev because his breathing was especially bad, each night for a different reason. I had to raise my hands and accede to both the overwhelming discomfort in my back and the fact that I wasn't getting his saturation high enough, after I worked on his chest and back roughly every twenty minutes until 03.30.  It took several minutes on 5 liters before his sats stabilized and he spent the remainder of the night on oxygen, then in the morning things settled down.

The second night he had a complete blockage episode. This is when there is no air incoming or outgoing and I am nearly struck down with terror as I grab hold of his heaving body violently contorting itself, fighting to breath but not succeeding. His throat then goes into spasm causing even more difficulty as it prevents me from changing the position of his jaw and leaves me to alternately compress his chest and beat on his back while still wrangling for a handhold on his jaw. Somehow, amongst the maelstrom of appendages and fear, things settle, his color returns and I'm not certain if my body is actually shaking or whether that's just a feeling. In the evening I had given him his regular inhalation therapy earlier than usual, which may have been a factor so in case I again feel he needs the earlier session I will be certain to add another one just prior to putting him in bed.

On Sunday I had lifted Segev's wheelchair as I always do, very carefully, into the van (without authorisation for an electrical lift this is what I have been doing for 8 years now) but something went wrong, though I didn't begin to feel it until the next day when I went to meet with the doctor and hustling through the corridor (after my dentist appointment) there was pain with every step. It wasn't a pinpoint pain but more like a matrix that activated different series of points depending on whether I put my left or right foot forward and was also dependent on the speed with which I was walking. Unfortunately I was not willing to shuffle through the hospital corridors holding my back with one or both of my hands, being too proud, in of all places, a hospital.

Sege'vs throat is less swollen so his acute breathing difficulties are subsiding incrementally while his medium sized seizures have increased two-fold. As most parents of children with severe epilepsy know, medications are akin to those carnival games where you have to throw a ring around the top of a bottle, usually watching the ring dance merrily, cling, cling until dropping in between the bottles. You try again because you believe somehow you will get it right, except that with the medication dance the consequences of a missed throw is your child having more, or more severe seizures. I am tossing rings and am beginning to wonder if I wouldn't have better results if I closed my eyes.

No surgery. Again?!

It might be a combination of having treated my mother many times with always being aware of her physicality but as I look at pictures of her, passing constantly across my computer desktop I can remember the feel of her wrists, the texture of the skin, the weight of her hand, where the bone rose up on the skin. 

Always soft wrists and gentle hands, often on my shoulder. That soft and gentle warmth is what I would want my children to remember about me but as it stands presently, in this overly intense endeavor to raise my son's quality of life, slow down its degradation, prolong his life, I feel there is hardness where there should be supple determination. Brittleness even, instead of that sense of complete settling and focus.  

There is change for the better, as I see it. There is a bit more calmness, a bit more restraint. There is also a deep state of melancholy that has me feeling the desire to weep, most of the time. Is it time to weep? I'm not certain, putting it off perhaps indefinitely.  

As I went for my fifteenth visit to dentist in four months this morning, all still for that one, problematic, complicated tooth I was dreading the pain but much more nervous about what stands before me in regards to Segev's operation.
Yesterday I took him to have an ultrasound done of his diaphragm to determine if indeed it is paralyzed. It is. So first thing I mailed the pulmonary doctor the result of the test and asked if I should come in to see her. She sent a reply immediately with her secretary's number. The secretary could only give me an appointment in three weeks. 

"What about today?", I offered, hoping she would say something was available, anything after my dentist's appointment.

"You can come between 11.00 -12.00, but with payment authorization from your health care provider". 

That was good, certainly. Now on the way driving to the dentist I called to arrange it but they reminded me from the central answering service that i first need an invitation either from the hospital or a referral from Segev's doctor. Everything goes through the central answering service, you can't call the clinic directly, and to ask them to message the clinic to call me would mean getting back to me the next day.

One of the clinic nurses provided me with her cellphone for exactly such situations and when I reached her I was happy to find that she was working at the clinic today. She went into the physician's office and I spoke to her, explaining the meeting was in a matter of hours. She wrote the referral, the nurse took it to the office and asked them to forward it to the committee for authorization.

After the dentist I called the answering service and they faxed the document to the office in the respiratory clinic in the hospital.

Complicated, still, but a pleasant moment when you need the system to work and are able to make it work with some 'above and beyond' help from people who care.

The meeting with the pulmonary specialist was interesting in that it changed my perspective. To recap, Segev was admitted to hospital for a tracheotomy as his breathing was more and more labored, seeing lately a period that he was on large amounts of oxygen for thirty straight days, occasionally without result. But then I did what I had not done for nearly six years; had a chest x-ray made of Segev.

The rationale had been, 'what new thing will they see, his condition is known' why I hadn't taken him earlier for a chest x-ray. His bouts with pneumonnia and bronchiectasis had improved over the years. True he had severe paroxysms of pain, but there were large swaths of time in between them, months even and his latest bout, the worst of all his life which had lasted three months were coming from his intestines and pressure in his stomach wasn't it? We did a stomach endoscopy to check on that and everything was fine. An abdominal CT was scheduled until it became clear that, as was previously the case the test had to be performed with overly large amounts of contrast injected in his overly fragile veins. They've never held even normal fluid administration for long, everything eventually always leaking into his arm, so the CT was out.

Now the x-ray has changed everything. 

He has a paralyzed left diaphragm but the question is also since when? What caused it? This is relevant for several reasons, one of them being the prognosis for success that surgery to 'correct' it will have. There is no real solution other than tying the diaphragm down. It won't start working again. There is such a thing as a diaphragmatic pacemaker but it is only used when the paralysis is bilateral. Normally this surgery is only performed when a child is ventilator dependent. This is also rather relevant since no matter how I explained Segev's ailments, previous surgeries, vastly increased kyphosis, extreme bouts of pain, in short any and everything which could have a connection with this new found condition of the diaphragm, the pulmonologist was adamant it could not be caused by the raised diaphragm and intruding bowel. She went as far as to say that even bowel symptoms were not influenced by the displacement thereof.

I'm leaning towards believing her, though I desperately tried to cling to my theory of it being responsible for the majority of Segev's discomfort. Of course I will be seeking further opinions, but have studied the matter fairly well, what she said falls in line with the experience of research done in the area.

One thing we did agree upon was the fact that the issue has a strong impact on Segev's breathing or ventilation. His oxygen stats are occasionally high enough to know that he's not (yet) a candidate for 'CO2 retainer', which severely impacts longevity. His left lung does close at least partially several times a day necessitating oxygen supplementation and intense physiotherapy. His breathing is often labored, but that comes in part also from the blockage to his airway higher up (hence the need for the tracheostomy).

The real complication that awaits, what I see as motivation for going ahead with the surgery, are severe pneumonnia's that don't respond well to treatment because you have a lung which isn't working, partially or completely closed to air. A little greenhouse for klebsiella and pseudomonas in other words.

But then comes the fact, as reiterated by the pulmonary physician, that the improvement in ventilation is very minor and that often the diaphragm does not remain in place after surgery. It might not help him breath easier, although perhaps 10% increase now, equals a whole lot of prevention for later. It might take a few years for the diaphragm to release again. But, Segev can also come out of the operation unable to breath on his own.

So this issue is not settled, the course of action uncertain. The risk of the surgery is great, the reward might not be measurable. What is measurable is that Segev's breathing is getting worse.