August 28, 2016



From long ago, a serenity long lost.
I felt, as I woke Segev's brother and sister, that I was teetering on the brink of a precipice.  I thought that I had come close enough to my son's death enough times, to stand firmly on my own two feet. But I felt unsteady as in the midst of a severe storm, not buckling but oh so unpleasantly buffeted and pummeled. I thought, 'a few more hours' and that soon I would be consoling my eldest and middle child and they would be consoling me. So I woke them as they tried to find rest after they had helped during the night, assisting in emergency care for their brother who was barely able to take breaths and whose oxygen level, despite hours of constant chest compressions, ambo bag, IPV and suction, was hovering at 62%, having been stuck for some time as low as 50%. 
Hours where the fear was not just to make him breath but that the chest compressions wouldn't break his ribs. His throat was partially closed off making suctioning impossible. The administered steroids might help, but they would take time and presently he had been without sufficient oxygen for so long that damage is not just likely but a certainty. 

There was a build up over the two previous nights and we all worked, myself and his mother without sleep, to keep him going. He made it through those nights but it left everyone on edge and under a heavy, somber mood. At four O'clock in the morning, yesterday, it slowly became clear that this was unmanageable, but I still wasn't ready to let my heart follow my mind and so continued. After another intense hour of compressions his oxygen level wouldn't budge from 62% and it took several more minutes beofre I slowly reached to turn off the pulseoximeter entirely, knowing that whatever reading it showed, nothing more could be done. It was completely and utterly out of my hands, perhaps for the first time ever.  In that moment of silence only the humming of the oxygen compressor had something to say and I wondered if I should silence it as well.

He was well sedated. Though, as his mother pointed out his breathing was slow and very labored. She suggested we further increase the sedation so that he wouldn't struggle so much to breathe. With a sense of relief I quickly agreed, in my head, but as I actually responded to her I said, 'No, not now. Maybe later, but not now.'  I sat with my son and spoke to him, of important things that we know but sometimes need to say aloud. I caressed him, kissed his hands and face and thought of the incredible journey we have had. I told him I was sorry it had to be this way and didn't know if he would somehow understand enough, from his own ability to make sense of things, pared as it was to a few basic perceptions, to forgive me, if ever he saw fit to place blame. I cried quietly. 
I thought Segev's brother and sister should use this opportunity to say goodbye to their little brother and I woke them both.  I lay on the couch, too emotional and exhausted to be deep in thought but still managing, 'this is it.' and then, 'How long will it take?'  I fell asleep; an hour or two passed and I woke to hear his mother's excited voice: "He's up to 84%!" 

Now Saturday, Segev has even managed to smile here and there. I'm giving him antibiotics even though the medical consensus is that it won't be of any benefit. Like the decision not to increase his sedation at a critical juncture, which could very well have further suppressed his breathing, I follow my intuition in all important matters. We are completely drained and still  try to maintain Segev's always complex care but now, with a sense of urgency and heaviness that simply outdoes any other period over the entirety of the last eighteen years. We continue to move, stumbling perhaps blindly, bloodied, but still moving.

August 17, 2016

So many miles we have crossed.

I am an old man now. Not in my mind, of course. But all the same, for eighteen years I have been fighting one crisis after another, each day. One more time to prove that life is here to stay for as long as the moment will carry. I breathe and so must he. There is no quitting, until the end overtakes us. And all that is, has been just and each moment has been weighed and those things, those moments, those accomplishments will never succumb to what is less. The endless nights of dawn, the turmoil, the anger and the lack of respite. If he can do, so can I. Perhaps less, certainly much less than once, humbled to know that less is forgetful and looking for pleasantries, groaning and no longer jumping from bed to treat, placate or save but to drag aching bones and confusion to the fray; but with a breath and a prayer, always, always into the fray.

June 09, 2016


What does it mean to be an extreme caregiver to your child? Well in my case it has meant gaining 35 pounds, becoming too exhausted and injured to maintain a lifetime regimen of exercising and that I started smoking. Smokers, of course get no sympathy. I grew up in a household where both parents were heavy smokers but I didn’t start until I was 46 years old. That probably means something, but I’m not certain what. Extreme caregiving has meant that my expression of creativity, writing, was put on hold for over 15 years, until it exploded from my unconscious with blogging about my son and life with him in 2010 and then publishing poetry in June 2013. After fifteen years of carrying my son and his wheelchair up two flights of chairs, my back was finished and now it’s difficult to even lean over my son and perform the physiotherapy which has helped him to survive.

It has meant that, despite best intentions, planning and tremendous effort, my other two children’s needs were not met. This sounds as though my life has no balance, and it may well be true. But balance in life has a lot to do with your own perception. Balance is, by definition, never static. It is a balancing ‘act’. And as such there have been tremendous swings of the pendulum, more extreme motion than most encounter. Pain and suffering, even death, has a way of doing that. Stoicism is great, if it comes to you naturally but I am an emotional guy, prone to outbursts of joy and sadness, love and frustration. I fight against the swinging of the pendulum, often with success. Sheer will can carry you a long way towards your goals. When the goal is to create a life-environment where happiness coincides with an unflinching look at reality for your children, motivation never seemed lacking.

We go through changes with age, no doubt, often under the influence of our interactions but mostly due to our reactions that stem from who we are. Some don’t need change or are impervious to it. We all like to think that we are constantly learning. Only, the accumulation of information today is so overwhelming that it passes for change. When you are challenged to the extreme by your life-circumstances there exists the possibility that it won’t change you at all. At least not on a conscious level. What I have seen is that change is never what you expect it to be, if you are open to it. Sometimes we actually retreat to a safe place, a known reaction, but that is not an authentic one. I believe it is only when you are surprised by yourself, when you are taken down a road that is unfamiliar to your psyche, that true change is happening.

Someone who was very close to me more than once said, “Where is the Eric that I used to know and fell in love with?” I’m here, I would say. The circumstances of my life have not made me a different person but it has, through its extreme nature, sharpened certain parts of me, uncovered parts through the process of erosion, that even I could not know existed. Life is full of changing experiences, some short, some long. Often we resist change and, as I said, we retreat to reactions that are meant to keep us safe, away from becoming something we don’t really trust, but all that really is, is fear of the unknown.

What we know, is safe, comfortable even. What we don’t know catches us off guard and can send us reeling like a drunk through the streets. When my mother lay dying and I left her for the last time that’s what literally happened to me. I wasn’t capable of walking in a straight line, I was punch-drunk from an overwhelming degree of every emotion possible, happening at the same exact instant. I clung to a wall so as not to fall down, and later wrote:

The end

Clutching the wall,
as all hope leaves me,
not to tumble onto the street,
but trembling,
onto my knees.
Where wet cobblestones frame my anguish,
my deliberate crime of absence,
with just punishment,
that relishes not only love
but rather carelessly,

There is a sense of quasi-hope in that last line. Life is fickle, not fair by any stretch of the imagination. If you have religion you possess a ready-made framework that helps you to deal with the unimaginable. You still struggle, of course, but from my personal view you need to learn what your framework really consists of and see how it isn’t adjusting to these traumatic experiences, to move forward. If I am grateful for hardships it is lies in the fact that it brings you to the boundaries of who you are, you see yourself, no longer through a ‘mirror darkly’. Moments of clarity arise which can be seen as religious epiphanies, without the religious framework, but often with an expression of religious language, because those phrases are beautiful poetry and thus, timeless truths.

When you go beyond your boundaries you, ‘lose it’. And I am no stranger to those experiences. Some get back on track, find the path again and maintain composure. Others wander off into the wilderness, never to be seen again. G. Jurgensen, author of ‘The disappearance’, a haunting book wherein she shares the loss of her two daughters, wrote of me, “His way is more that of an explorer than of pioneer. For reading his poems conveys the feeling that he is driven by the discovery itself…”  I’m not happy with such a description. I would rather be a yes-man. The one who follows orders, is told what to do. But my experience in caring for my son taught me that there are areas wherein you must act as an explorer, covering new ground because, quite simply, no one is there to lead you, to tell you how to behave or even how to approach an obstacle. Your child’s life hangs in the balance, but at the same time you are carrying him with you, piggyback, through treacherous terrain. Terrain that you are not a qualified guide for. It comes down to an experience of raw survival. I didn’t know this going in. I thought, with my own meagre medical training, the professionals will know what to do. We’ll figure this out. Things will be OK. So, let’s start! Let’s start looking for solutions. A friend once told me, “Yes, that’s the problem with men, they can’t accept the notion that they can’t solve a problem.” Sure, if you get stuck in that place of frustration, the feeling of helplessness that comes with not moving toward resolution, then you won’t be able to deal with the real issue at hand. But the solution is easy. You do accept that you can’t solve the problem, in the way that you are trying to solve it.  But a solution exists, a way to help exists.

When I visited my mother on her deathbed in Holland, my brother was also there. He saw me do what I do best; little adjustments to her position, pressing on areas to alleviate pain, spraying moisture into her parched mouth, supporting her chin so she could breath more deeply and paying attention to oxygen levels. All little things which came naturally. He felt bad about not being able to do anything, just standing there. So I told him that he is being there, with his mother. For a brief moment, until she lapsed into unconsciousness, until her light finally went out, she was able to acknowledge his presence, as she had done with me the night previous. That was enough. The connection had been made and it was enough. We are never doing nothing, it’s just that the fear of not being effective in a situation, such as I experience daily with my son, can be overwhelming. A whirlwind of doubt is raised as we feel incapacitated by our emotions.

For some it comes naturally, for others with experience, that we can find in those moments a degree of focus, slowly shining its light from what I call, a ‘well of intent’. And all of this is possible if we can listen to the voice that our hearts sing continuously in the background. When we let go of fear, by delving deep into ourselves, we can hear that soft singing. The clutter of distractions that infest our minds, the dead-end paths that we let our minds go down knowing, knowing that it leads us nowhere useful, take us from the grace of our own hearts.

None of this lessens the knot I feel in my stomach each and every time my son is suffering; after eighteen years it has not relinquished even a little bit of its bitter sting. I believe there is balance to be found though, in the smiles that can be brought to his face, merely by being present, because he has understood with experience, that the intent is there. That all the effort has created a bond, which always existed, in its entirety, in full force, from the very beginning and which time has allowed to mature, to express, to go out into the dense unknown forest and finally return to its natural home, our hearts.

May 26, 2016

Thoughts, after fifty years on this earth.

Forty four years ago I decided I would become a writer, because I wanted somehow to bring about resolution to conflicts that I witnessed people experiencing in their lives. That was my second choice, actually, my first was to become God, but I quickly realized that if I could think of that at age six (I wasn’t terribly concerned with actually how I would become God) then adults, infinitely smarter than myself and higher up on the pecking order, could do so and would be given preference.
But stories could be manipulated, changed, and so I vaguely envisioned rewriting people’s lives and conflicts and that they would then be able to see that things could be done differently and the outcome would be a more positive one.

I wrote all the time, nearly every day, or simply made up stories and told them to people, sometimes placing myself in the narrative. These stories are not to be confused with ‘lies’, ‘fibs’, ‘fantastical concoctions’ or ‘wild tales’, though I was not infrequently admonished that this is exactly what they were and that I should, ‘stop living in a fantasy world’. I was not deterred, my intentions were pure.
In adulthood, I discovered a connection to certain aspects of people’s narratives by being able to intuitively say the right thing to a person at the right time. These rare encounters were to have a crucial influence on peoples lives, in essence allowing them insight which led them to an alternate future. That realization came roughly at the same time that I decided to (temporarily) abandon writing, a decision that held sway for over fifteen years.

The very first thing I wrote after this period was a poem memorializing my mother-in-law, of whom I was very fond and successfully helped treat for pain and discomfort after she was diagnosed with renal cell carcinoma. Years previously, waking one morning with an epiphany, I chose the profession of physical therapist and based my practice exclusively on visiting patients in-home. I seemed to gravitate naturally towards treatments and strategies of pain management. This calling is now ongoing for more than 26 years.
In 1998 a force majeure entered my life when my son Segev was born with a life-limiting condition and extreme disabilities that made him wholly dependent on round the clock care by his loved ones. For eighteen years we have struggled mightily to allow him the opportunity to live, to allow the meaning he brings to our existence to unfold. Countless times he has been close to death, pulled back from the brink; either by the brazen sheer strength that his tiny paraplegic body somehow magically contains, or by the will and determination of his family to find solutions that give both longevity and quality of life.

In the last few weeks Segev’s weakened, poorly functioning body, was struck down by a viral pneumonia that brought him to within hours of death. But he made a partial recovery that has allowed him to hobble along with a small portion of his lungs still functioning. Unfortunately a neurological downturn began developing concurrently, exacerbating the horrendous seizures which have plagued him daily since birth. For nearly a week now my son has been in a medically induced coma (not unlike the natural comas he has faded into too often) and the situation doesn’t look good.

But, I don’t have a plan. I never do. Remember that thing where you say the right thing at the right time? Intuition? It hasn’t failed me yet, but that doesn’t mean it always appears when you want it to. It just doesn’t seem to work that way. And it took me decades, decades, to interpret the things I was seeing or feeling, so that I could make decisions with confidence. After 18 years of caring for my son, a toll has been exacted, a levy imposed on my mind and body which has shaken that confidence. Depression, singularly the result of continued exhaustion from chronic sleep deprivation, acts to further dip one in the murkiness of doubt.

The one thing that now preoccupies us, on an hourly basis, is what is best for my son. What would he want, is an impossible question since he has never been able to express anything but either joy or discomfort. So we have to find an answer within the confines of those experiences. For myself I have always known that if his smile disappears, I will not be able to maintain that grinding pertinacity that seeks goals, if all that it will lead to is oblivion. The only goal which remains is to do our best to make him comfortable, that is obvious, if no easy task, not in the least because we are beyond tired both mentally and physically, stressed to breaking point. Financial pressure mounts as I am unable to work.

The thing that isn’t so obvious though is that during the course of the discussions of late with his mother and siblings how questions of our own ‘comfort’ perniciously creeps into that equation.  Not actual comfort, much more what and how much can we do that still bears resemblance to a path of dignity for our beloved Segev.

I wanted to say, ‘as I have been unable to work, since doing so would compromise my son’s chance at a momentary reprieve, a few moments from which to squeeze a last bit of joy from an exquisite life’. But there you have it. Dying isn’t pretty folks, especially where kids are concerned and after eighteen years of this business, I find myself unprepared. I don’t want it to end, which has served us well, bringing us this far along, but that is now a hindrance. Because after all, what a parent wants in this situation is to see with clarity; not only what to do, what to think, what to feel but to come to terms with the fact that somehow, somewhere, this is OK. That to ‘rage, rage against the dying of the light’, can be replaced with the knowledge that all journeys end, but that that doesn’t diminish one iota from the experiences that have enriched us. Bathing our very being in a sweetness and purity which are immortal.

May 05, 2016

The aging caregiver

There was a short conversation with the palliative physician who joined the team about six months ago. Going forward, after the catastrophe of attempting to control my son’s pain with a variety of opiates, putting him at death’s door yet again, he said he was running out of options. Fortunately I was able to increase his three other pain meds and add a fourth, which is helping Segev considerably.
But today is another such day where he is suffering signifcant pain. The last week has been another episode where he is vomiting frequently, his lungs are heavily congested, there is an increase in seizures and drops in oxygen saturation and a hard battle with an infected gastrostomy site, despite the constant methods of care. Today is another day where I need to decide whether I go to work or stay by his side.

The other thing that the physician said, more a rhetorical question, was “You know that what you are doing is utterly exceptional, right?” He continued, “The way you, his mother and his brother and sister rally around Segev is amazing. I’ve never seen anything like it.”

Since his birth, in order to give my son the full attention he deserves has meant cutting my work week from six days to just two. And consciously working to create an environment where his brother and sister became competent in providing practical assistance for all of the varied and complicated issues that are dealt with throughout the day and night, was no small effort. But this has paid dividends tenfold so that Segev is still with us today. Whether simply providing suction or venting his stomach or, as the case was in March, physically holding his airway open while, gutted with fatigue, I had to calculate the proper dosage of sedative to be given subcutaneously, they are there for their brother.

Being able to work only two days a week in my profession as physical therapist, with some degree of irony as a specialist in pain management, very quickly brought us to the poverty level. At that point, beyond what life with my son brings, be it chronic sleep deprivation, back issues, tendinitis, memory loss and clinical depression, your world becomes even smaller. And yes, quite a bit more simple. There are no extracurricular activities for the kids, no new shoes, dinners out or, as often is the case, birthday presents. With time those things cease to matter. Still, while able to provide a roof over our heads, the sting of not giving your kids a ‘regular’ upbringing becomes surprisingly more potent. They have though, become used to it; it is their ‘normal’. 

With his worsening condition over the years, punctuated by an endless nightmare of life-threatening crises, there are no trips together and even walks around the village are out of the question. With Segev requiring some kind of action to be taken every 30 minutes, rest is impossible. 

Obviously this obsessive behavior of mine has had negative results as well. The stress everyone lives with is through the roof. Our lives have been put on hold, though I’ve always pressed my other two children to forge ahead, study, go out and pursue their dreams and they are in the early stages of doing so. Perhaps a little later than others, but what matters is that they have their dreams and thankfully tremendous talent as well. None of that has been completely stymied, for which I am ever so grateful. Perhaps the perseverance present in our lives has even given them a strength that otherwise would be lacking. I can only hope this is true.

February 08, 2016

The Savage

I feel I need to write this, yes, in the middle of it all. During the night we took turns, inserting a finger into my son's mouth and pulling his lower jaw forward, allowing him to breathe. Yes, without doing this he would have died. Suffocating. Slowly or quickly, I didn't know, but the natural thing to do was to fight for him, when he couldn't fight for himself.

The why and how of his deteriorating health, and the repeated incidents over the last few weeks of status epilepticus and no longer being able to breathe on his own, seems almost irrelevant. My mind still races though, even as I write this and he lies next to me on his side to allow his lungs to drain better, to try and understand the possibilities, the causality. And we've made decisions based on how we interpret that information. We've decided that if this happens again we will most likely take him in for an emergency tracheotomy. Because even when there is no air coming into his lungs, you can see him making the effort to breath. He's not ready yet to leave this plane of existence.

I slept for three hours on the couch at his mother's, while she held his jaw. My daughter suggested a position for him to lie in to force his airway open with enough success that the need to manually help him to breathe became less frequent. The seizures, which started in the evening and have continued through this morning have been reduced with massive sedation. His lungs have filled up again, despite the constant treatment and all these things have blended into a fireball of destruction.

The good times have been there, I have pictures to prove it for when my memory fails me, and I assumed they should give us the strength needed now, but in a somewhat bitterly farcical sense, those moments stand in stark contrast and offer little help.

To be honest, it's eating at our resolve, or perhaps to put it into a more positive light, we are simply recognizing that this is the natural course of things in my son's fragile and savage life.

January 16, 2016

raw update: nothing is the same

It's difficult to know what my son is experiencing right now. Every aspect of his condition has worsened dramatically over the last month. The last week has been hell. While we bombard him with multiple pain medications, it's true that he suffers much less pain.
Using opiates is not a new idea but one I've always vetoed until recently, relying instead on standard pain meds and cannabis. None of which significantly impacted his severe pain. The fentanyl does that, with reasonable consistency and efficacy. But there is a price which we are all paying as Segev's condition continues to deteriorate.
The return of double pneumonia, (which had been already been treated mid december) is exacerbated by the drying and cough suppressant effect of the opiate. Less coughing means the excessive production of phlegm remains in his lungs, lowering oxygen levels despite supplementation 24/7. His seizures are through the roof. This morning he once again entered status epilepticus (a life threatening condition where the seizures simply won't stop) and I resorted to sedating him with subcutaneous injections of Midolam (used as general anesthesia in surgery). It barely did the trick even after repeated use. 
We've been fighting to raise his oxygen levels since yesterday afternoon, with little to show for it. He has GI bleeding which is being treated. Only one lung functions and it too is becoming tired. But yes, he has much less pain. 
Sleep comes in fits and starts as I launch myself from bed every twenty minutes or so, awakened by the sound of the oxygen alarm or the sound of him seizing. His upper airway is collapsing and he stops breathing every so often until I pull his lower jaw forward to allow air into his lungs. Even then his oxygen saturation remains low. His ability to regulate his body temperature began failing a few months ago. His skin is burning hot but the core temperature is steady. He's drenched in sweat most of the time despite fever medication thrice daily. His bladder doesn't empty and I resort to manual pressure but this only helps when he is conscious. The last time he smiled was ten days ago, maybe more.

January 5th

For the past 18 years I've only worked two days a week, the rest caring for Segev. I feel crushed under the strain of providing care and pain management to my patients while suffering further from my own health issues, once again nearly collapsing to the floor from both physical exhaustion and chaotic emotional state...

How, under an even more complicated regimen...  

We discuss the options; a tracheotomy to help with the increasing upper airway constriction. The downside is his slim chance of surviving surgery and the inevitability of being on a ventilator if he does. The ventilator might help him, giving his body a reprieve from the effort of breathing, since over the last two weeks he is mostly dependent on 'abdominal breathing'. Imagine that every breath you took, every single one, was as difficult as sucking mashed potatoes through a straw. Now add all the other problems. But a ventilator (if we were ever to get out of the hospital) in my son's unstable condition, presents its own difficulties and drawbacks. Whether infection or him possibly ripping it out of his throat during a violent myoclonic seizure, to the technical issues of making adjustments to the ventilator itself when the conditions inside of his lungs, where the altered biomechanics and severe infection will have you chasing your tail every minute of each day, appears an even darker path.

... all options have always been openly discussed and decisions are formed in consensus, each adding their own perspective and concerns, while our beautiful little man sits in his chair, oblivious, each slow breath counted.

I admit to myself that I am less capable. Segev's brother and sister are rallying, as always, and I simply could not do without them. By myself, stumbling dizzy from bed to grab the suction catheter or grasp his flailing arms as he seizes, continuing throughout the night with interpulmonary percussive ventilation, nebulizer inhalation, respiratory physiotherapy and administering sedation that further suppresses his breathing gives diminishing returns. And now we find ourselves in a maelstrom of confusion. The complexity, the interactions. Because you simply cannot know.

From the corner of my eye I can see my kids struggling under it all and I think to myself, will the good also be remembered? Will this give them tools few have, or break off pieces never to be found again? What I do know is, I am grateful and we cannot navigate any better than we have done.

The focus now is to make the best decisions, or more precisely, to live with the consequences.

January 09, 2016


Once again we find ourselves in the midst of a true crisis. The kind where you simply don't know if things will sort themselves out.

There are many different kinds of seizures, but the ones you fear the most are the brutal myoclonic tonic ones that ragdoll your kid with such a violence, that your heart breaks looking at it. When this happens despite all the medications, the CBD and the Cannabis, despite all the careful chest physio, despite the Fentanyl and analgesics, as though the hand of God grabbed your child by the scruff of his neck and went to town with a vengeance.

After one, your so glad it's over, you forgive everything and bask in the calm. But when it comes again and again, and again you become frantic. You give more THC but it is without effect. Then come the extra doses of Clonazepam. And again. And again. Still with no effect. You try Diastat. Finally, emotionally raw, shaking, you see some improvement. The seizures have stopped, after hours of hurt.

Now the differential diagnosis: is it a side effect of the opiates? Too much CBD? Pressure on the spinal nerves overloading his system yet again. These are important since a decision has to be made, what to do to stop the cycle.
It's time to move on to the next problem; 18 hours have passed and he hasn't passed any urine. You palpate and feel his distended bladder pressing against his abdomen. You press and massage, trying to wake him so that he can be aware of the pressure and maybe, just maybe he'll be able to relax the sphincter and pee.

It's two thirty in the morning and you've been working to stimulate his bladder for two and a half hours. But he won't react, even to pain stimulus. Oblivious, he lies on the couch bathed in sweat, your hands probing, cajoling, telling him ten thousand times, 'Segev you need to pee'.
Everyone is called, his sister and mother come over, to help and also make sure I'm thinking clearly. Everyone agrees this is all the result of a severe pneumonia. You bring him, with your own twisted and sprained back, to the bath chair and dowse him with warm and cool water. Still nothing. It's three thirty in the morning and finally he pees, nearly twenty four hours since the last time.

A sigh of relief. You continue the nebulizer therapy, the Inter Percussive Ventilation and the chest physio throughout. His oxygen saturation finally stabilizes. At four you climb into bed, the monitor beeping softly next to you and you fall asleep looking at your son's labored breathing an arm's span away.

Then at six O'clock the seizures start again. More diastat, more clonazepam. But you know it won't be enough. The seizures are no longer seperated by an hour or even a few minutes. He's spewing phlegm with each forced breath. The seizures, massive myoclonic-tonics, turn his lips blue despite the oxygen. They are continuous now, he can't catch his breath.
A phone call to the hospice physician means help is en route. Segev enters 'silent status', he's still seizing but you can't see it unless you know what signs to look for. Another hour before the doctor, out jogging when you caught him, will arrive.

Subcutaneous midazolam is injected and we wait. Another dose and another 8 minute wait to let it seep into his blood stream. Segev's eyes are moving a little less randomly, he is coming out of status. Antibiotics are administered. Hopefully the antibiotics will work. The twitching won't stop until his lungs start to clear over the course of a few days.The seizures, the worst we've seen in many years, should follow suit.

January 07, 2016

I, the aging caregiver: Introduction

Aging is a relative process. Being vain enough to think that I have aged well, until I look in the mirror, has long ago been replaced by the realization that the accumulated mileage is no longer covered by warranty. Coming up on eighteen years of caregiving for my son, it hasn’t always been easy, heck, it’s never been easy. If not for his smile and the twinkle in his eye when I sing to to him, (well cackle like a hyena is a more apt description, but he loves it!), I wouldn’t have been able to give one hundred percent. 

Of course, what was one hundred percent a few years ago is pitiful when compared to today. It’s not much of a paradox, the fact that the more you give, the less you have to give. You need to pace yourself for the long run, but to begin with you cannot know how long that will be and so you give it your all, hoping the long run will teach you to balance your own needs in face of your child’s. I never found that balance, and yet in part because of that, my son is still here. 

You’re not supposed to have regrets, so they say, and while hindsight is useful as it can teach us about the future, I wish it could have been different. Now, that doesn’t matter anymore. Now each day the wear and tear on my body tells me, you gave it your all. I find solace in that, where a few short years ago, I couldn’t. The only thing that mattered was making sure my son was comfortable for the next few hours and those few hours would build up to form an unbroken chain until we reached that mythical goal where he felt comfortable, happy, protected for most of the time. 

This life though, with a fragile child who was given no chance to live, is not a story of continuity. Not a race to the finish line in a sports car. More like a leisurely drive through the country side in a broken down jalopy and you have no real idea of where you are headed. You learn one thing for certain: if you put it in your mind to reach a specific destination, you will never arrive there.

It appears you can strategize, and you should, but you can’t plan. You react to situations and your ability to preempt will bring momentary triumphs, but any preconceptions about how your life with your children will unfold, is soon exposed for the fallacy it is. 

You readjust, you compensate and as far as the outside world is concerned, you put a smile on your face. You accept. You may balk at this idea; the world should know that your child is suffering, but no one is interested in that. They want results, they want positivity. Sometimes you care what they think and on occasion you think, ‘to hell with them’. You have to be true to yourself and to your mission, to provide loving care, a stable environment, that safety for your child to get the most out of a short and hurtful life. In short, you offer them protection. That becomes your meaning. Your child’s meaning lies within showing you what purity is. What the basic element of a profound life is, that unconditional love. How far you take it, is entirely up to you. 

Obviously, the more you go to extreme lengths the more you’ll feel it, as time carries on. You learn to find joy, continually, repeatedly in simple things exactly like when a baby smiles for the first time, coos for the first time, giggles for the first time. You find the ability to remain surprised, the ability to remain in awe and bask in happiness each time something good happens. You become a little bit like your child, discovering that happiness afresh, each and every day, as though time has wrapped you in a cocoon, a stateless mind where time doesn’t exist.