September 29, 2010

Not alone

The value of taking care of such an ill and severely disabled child does not lie in the ability to stave death for as long as possible, neither in the spare good moments, in between the suffering, that shine like little diamonds of near bliss from amongst the darkness. It lies in the fact that we undertook this indescribably difficult voyage together, voluntarily, so that in being together we will never be alone.

September 28, 2010

Have I mentioned the cussing yet? I wonder if one day my children will since they certainly hear enough of it. And it hasn't gotten better with the years, much to my chagrin, it's becoming worse. At the heart of it is of course frustration. Coupled with chronic lack of sleep makes for a charming combination. The outbursts definitely come under particular circumstances; it's not as though there is an incessant stream of ugly words day and night . 
And don't get me wrong, the F-word is in itself not something ugly in my opinion (oh how opinions change), it's the intent behind it, that's what's getting ugly. I'm just happy I live in a country where English is not the lingua franca since it is bad enough that passersby can occasionally hear my frustrated screams when, just as now, tired, in pain from shoulder and neck problems, cranky, I woke from a saving-me-from-collapsing-catnap on the floor next to Segev to administer inhalation to him and his last meal of the day--to have my slowed reflexes fail me as he began seizing and he pulled with all his might at the feeding tube attached to his gastrostomy. 
He is so out of it since the massive seizure he had a few hours previously that the pain doesn't even register for him. I'll spare you a description of verbal abuse I spewed at the walls, the air, the lamp, at everything and nothing.

My daughter is with me today and she has had to help a number of times with Segev so she hears me and it still embarrasses me even though she is used to it and English is not her first language, and after all I am just venting verbally which is better than if I were to smash things, at least I think so. I don't smash things. The worst it can get is slamming the microwave door closed which deserves it because it's in the way anyway. 

This was Segev's second very large seizure today. I'm used to his smaller seizures, about a hundred or more a day, since they are irritating but manageable. The big ones require oxygen as his lips turn purple (or all of him), control of the environment and towards the end of the seizure scraping his bare foot, as the strong stimulus helps shorten it. His ketosis has not been stable the last few days which most likely explains the break-through large seizures.

But it is those little things which can set me off because Segev's well-being is so difficult to maintain and without any feedback from him there are a hundred bases to cover. The area around the gastrostomy for example leaks because when they did the operation on Segev 6 years ago they made the hole the maximum size for which a valve exists, as though he were an adult, so naturally with the years the tissue becomes soft and unresponsive around the hole with no possibility of plugging it with a bigger valve. Stomach contents leaking out irritates the skin which is always red and inflamed. Today, somehow, (with special skin cream that has the same low PH as the skin) the redness had subsided tremendously. Naturally I was very happy to see this because only God knows how much it bothers him. 
So when I started feeding him and he seized, pulling at the tube, my daughter grabbed his arm and I removed the tube so that he could finish his seizure with less danger but then for some bizarre reason the one-way valve chose that moment to malfunction and a strong stream of oily liquid ketogenic food sprayed from the hole like a geyser completely soaking the area around it. At least it isn't mixed with much stomach acid yet but still the wet will restart the irritation much sooner. 

There are a hundred problems like this, all minor, but all very disconcerting, all adding one to the other until you basically have a dam of emotion waiting for one more thing to happen before a wave of cursing comes out of my mouth. Sometimes when you get started with cursing in a day and you find that one time repeats itself a little later and again, you realize you're having a flusterduck day and it's probably better to just go with it because you are not going to be able to smooth it over. It may even be therapeutic.

The question seems to be why is it getting worse? Not the vehemence, mind you, nor the frequency, just the choice of words has become more, shall we say guttural. I guess what lies at the bottom of this discomfort of mine with cursing is not the words or the unique combination I find myself putting them in, but rather the fact that it shows a lack of control. I understand after so many years that there will always be frustration. It is one of the major things I need to treat with my patients. I understand that if I had a partner in life the responsibility would be at least somewhat reduced and probably I would not have to live off of five and a half hours of staccato sleep these last eight years. 

It worries me because change worries me. Segev changes all the time. As soon as you settle into a sleep pattern or seizure pattern with him, as soon as you start to feel comfortable, having found your "method in the madness", he changes it. So be it. But when things start to change with me, I am confused and confused is not a state of mind I can allow myself with Segev. 
If there is one thing certain in this life, more than anything else, then it is my focus on Segev. My memory, my greatest asset, fails me, but not where Segev is concerned. My eyesight is getting worse; this happens. I hear rather poorly; accepted. 
And then it happened. And I wonder if it isn't connected to my slips of the tongue. I couldn't remember if I had given Segev his morning medications. It wasn't written down because of a hectic, irregular morning with Segev. The memory was gone or had never registered. I had to piece the facts together from evidence: I use two large spoons to crush the pills and always a tiny amount of the white dust gets onto the table. Fortunately I could remember the table had been cleaned the night before and so I knew if I found the white dust it would mean that I had given him but couldn't remember later. But if I didn't find any dust it would mean that I had completely forgotten I needed to give him in the first place. 

I did find dust that time and so I had to redouble my efforts to write everything down. Because being accurate and paying attention to little details is the key to success here. Perhaps the cursing is the least of my worries.

September 26, 2010

I am a receiver of second hand awards

Claire, whom you all know to find here has given me a hand-me-down award which is webspeak for a socially acceptable game of internet tag. I am supposed to tell seven things about myself and then find seven people worthy of the same treatment. I am no mathematician but if I do this, and Claire has done this (she has not! She gave the award to four people) and the person who gave it to her did it (he did) and so on and so forth, the entire world's population will have received the same award within 68 hrs and since they must continue forwarding the award once they get it from another than the original person whom sent it this will result in an infinite loop that will end civilization as we know it. I am going to put a stop to this madness right now! I will give you seven things and then send the award onwards, NOT!

1. I thought the word "mathematician" was spelled mathmetician.
2. I wrote a children's prayer that goes like this:
I hope and pray each and every day
that my heart be strong
even when I am wrong
and that life be fair 
to those that know me and care

3. When I dream of falling I can feel the real sensation in the pit of my stomach so strongly that I wake up from that and not from any fear of falling.
4. If we are truly open to see and listen, everything that we need to learn in this life will be shown to you, but don't think for a moment that it will be a pleasant experience. Nothing that comes easy has much value.
5. I believe in true love. I also believe that the moon landing may have been faked so go figure.
6. I don't have any particular feelings of sympathy toward the number "6".
7. I don't think anyone caught on to the fact that I wrote recently that Segev had apparently, after twelve years, somehow, begun to react to visual stimuli.

*Bonus: it took me two readings of what Claire wrote about me before I understood that she was complementing me. *blush*

Segev's lullaby

Hard to imagine but this actually helped Segev to fall asleep...

Good night under the stars tonight
Good night under the stars tonight
Good night 'till morning bright/under the stars tonight
Good night 'till morning bright/under the stars tonight
and dream a dream so far away
tomorrow brings another day.

Good night under the stars tonight
Good night 'till morning bright
dream a dream so far away, tomorrow brings another day.

September 25, 2010


I feel that I'm something of an old timer, struggling all these days, all these years, to make sense of something that is akin to volunteering for a starring role in a "jackass" film. I know, for example from the Ohtahara group on Yahoo!, that there are new "volunteers" coming into the fray every week. Young parents, often their first child, gravely ill, a sigh of relief at the name-tag their child's condition has been given but left to mostly their own devices.

On the facebook groups "Ohtahara syndrome" and my page "severely mentally and physically compromised children" I have implored parents to use a baby-sense like device and a pulse oximeter to monitor our children who are so at risk for choking, suffocation and central or obstructive apnea. This reiteration of the general need to monitor as best as possible felt urgent after I received notices that Xuan Sing age 13 months and Jade Taylor, 14 months, both of whom suffered from Ohtahara syndrome like Segev, had passed away.

SIDS, Sudden Infant Death Syndrome, as well as SUDEP, Sudden Unexplained Death in Epilepsy have claimed many, many lives. According to the latest thinking SIDS still does not have a unified explanation (probably since there are multiple causes). There are dozens of researched explanations, many of them sounding very plausible. For children though whose normal respiratory mechanisms are compromised as a result of brain damage and/or deformations the standard recommendations (here) do not reflect on any relevant preventative treatment. Therefore I place the emphasis on monitoring.

Here you can read an abstract from research that concludes obstructive apnea can be a factor "rather than the commonly suspected periictal cardiac arrhythmia or central apnea. SUDEP may share a similar etiology with sudden infant death syndrome (SIDS) and is likely preventable, at least in a proportion of cases."

Ironically Segev's 7 cases of central apnea/heart block, where breathing and heart stop,  happened when he was not being monitored electronically but fortunately, visibly. Each case of resuscitation except for one went smoothly partly due to controlling the natural panic reaction when seeing your son go purple in a matter of seconds, lying completely limp, not responding to pain stimulus and without a pulse.  

I have been practicing as a naturopathic therapist for over twenty years, specializing in Shiatsu and homeopathy, using traditional Chinese medicine, nutrition and bio-ergonomics to treat a wide variety of conditions. When I have finished my book on life with Segev I intend to finish my professional book, titled "In Search of experience". In having given over 18 thousand Shiatsu treatments where constant touching of the body and probing for feedback takes place, I am acutely aware of minute details and especially changes in posture, behaviour, skin colour, odour, muscle tone, pain perception and much more. They are indicators that gain incredible relevance in such fragile children as we have. Without this background I believe my natural curiosity to learn alone would not have given me the fortitude to stride into unknown territory with my son Segev.

There are many pitfalls that some can attest to that cause me always to preach to the "new volunteers" to, right from the beginning, accept help, demand help and educate themselves as best as is possible. Many I'm sure, in reading, have gone through a variety of stages to get where they are today or had to see their child pass from them even though they were still willing and able to do battle.

The stress of caring for such a child, like Claire laments here, when combined with extraneous circumstance, can see you falter. That is why we share our experiences; to learn from each other and even to teach. I've always regretted not pacing myself better, rushing ahead for good or for bad, usually for good though. Fortunately from some experiences I was able to learn without actually having to pay a price.
My last time abroad was after the war of '06*.  I went to Holland for three nights to see my brother and his children who were visiting there and whom I hadn't seen in over four years. As sirens resounded for over a month and thousands of rockets bombarded the countryside I huddled with Segev on the floor against a support wall staying my fears by contemplating what the future would bring. Life gives you funny choices sometimes and I will be darned if there is anyone who can know the longterm outcome of the decisions you end up making. 

When you get involved in a marriage you don't know that a child is going to come out of it that will devolve your world into a catastrophic maelstrom. You are durable though, you hang on because you are able to. The adversity forces you to either cave or bear the brunt of the storm. The same as Bennie, I see this life much like a hurricane with moments of respite as the eye of the storm passes. But truly, you never leave the storm completely and never remain unscathed.

When I got on the airplane I was nervous, more nervous than flying usually makes me. I had not made peace with the fact that Segev could die while I was away and there could remain with me for all eternity the knowledge that if I had stayed I would have been able to do something. Knowing this I felt I had no business getting on that plane. It wouldn't matter anymore if his death had been unavoidable or due to negligence.  But I quieted myself slightly with the knowledge that, while working two days a week I was always an hour's drive away from Segev. For all intensive purposes it is like being in another country. You simply cannot be there every second. Despite having had only 17 days holiday in the last six years. I regret having gone, considering it self indulgent. 

Recognizing precautions you can take to minimize problems that might arise are a tall order. My crystal ball is hazy at best and some problems simply require you to listen properly to your own body. There is an expression, "the cobbler goes barefoot" and it seems to me rather prevalent amongst the weary parents of extremely disabled children.
cat Miko guards the entrance
Sanji, a sprite 15, guards the landing

I had to begin lifting weights at age forty  to treat backpains from moving Segev's wheelchair up and down the 19 steps of the entrance and having to manually lift his chair into the minivan.
Segev's increasing size and weight becomes another issue since I have to lift and carry Segev through narrow corridors to get from one part of the house to another which is like carrying a very long 31 kg bag of potatoes, in other words, dead weight, where you have to make sure that every potato stays in the right place since too much pressure on a particular area can cause damage. On a regular basis all of this of course becomes moot as Segev, in one split second, becomes transformed into a flailing octopus as he often seizes when you move him. This touches on the discussion of the Ashley X treatment but Segev has "naturally" remained small. 
As a preventative measure to counteract physical difficulties, looking after your body requires serious consideration, exactly by those people who feel they are too tired to do it!

As you can see from below  photographs, maneuvering these tight spaces requires dexterity and foresight.
no space for his bathchair stand  

entrance to bathroom=no wheelchair

Today Segev has been good, smiling quite a bit. I uploaded a new video to his Facebook page here . He was in fact so excited today that my crystal ball  says in all likelihood Segev will be ill tomorrow from his lungs, a pattern that has established itself consistently for years now.

So...extra inhalations with bronchodilaters, oregano oil, physio (as always), homeopathy and a stock of antibiotics if deemed necessary. Preventation being part knowledge coming from close observation and part crystal ball prediction, or if you prefer, intuition.

*Israel - Hezbollah

Not to alienate anyone but Segev is Segev

 edited for grammar
There is nothing I wouldn't do to make Segev a healthy average child. But as it is Segev is not healthy and he is quite the opposite of average. As a matter of fact in all of my studies over that last twelve years, discussions with doctors in all fields of medicine and in my many communications with parents and support groups, I have only encountered one other child with Segev's constellation of problems that has survived as long as he has, even surpassing Segev by nearly four years in age.

But there are many children like that, that have a unique set of difficulties which one day will be properly categorized into a syndrome with a name. A syndrome which will firmly place that child on the endangered species list. I mean to say that there are children like Segev, with  different unnamed syndromes who also are at daily risk of succumbing to their degenerative states.

About 70% percent of the children born with Ohtahara syndrome supplemented with multiple system defects die before age three.  Where I live you are eligible for social service assistance and stipends only after the child reaches age three. Hmm, I wonder why? 

The fact is that while parents of handicapped children can stand together and organize themselves, demanding better services, accesss, treatment and financial assistance, parents of extreme multi complex handicapped children (EMCHC) basically have time and energy for this after their child has died. So in the mean time we will be included in the status of "handicapped child", not as EMCHC.  When I look at both adults and children and what qualifies them as being classified 100% disabled and dependant for all daily activities such as feeding and dressing and then I look at my Segev, I say to myself, "this is a child with 500% disability"

Now, I don't expect anything from the government. Really I don't. If they were to give me nothing at all you would not here me complain. Perhaps I'm just stupid that way. But if the government is saying "you have the right for your child to go to school" and "you need and will be given assistance for your handicapped child", then I say well let's go about it in a way that does not make you look retarded in giving this help. 
I would love to go to my parliament and camp out there with Segev, showing the world what's what. The cost would be Segev's health. Followers of this blog of course know that I could never do such a thing with Segev. But what will it take to change their perception and realize that there is a whole world of ways to improve handicapped life that doesn't cost money, it's a question of organization. 

But while respected people like Peter Singer can be a cause de celebre, probably feeling very noble in discussing such a diffiicult subject in such a forthright manner, infuencing policy of the future, I have to fall back on my basic belief that in regards to those severely disabled it is those with the experience which should be tapped for their insight, as a minimal ingredient in the discussion of policy.

 who is wearing the dunce cap, is it me or is it them? 
So let's stop beating around the bush though; our children are marginalized because they are exceptionally handicapped; not only government agencies are at a loss to deal with them, the medical community repeatedly sends parents home with their children, sometimes to die, without the most basic knowledge or foresight. Again and again I have seen this and I believe this is one front that should be addressed and to this end, finding no organized resource out there I started the facebook page which is linked on this blog (you do have to sign in or up though and then request membership).  

While it may be overly ambitious to attempt to organize treatment experiences, practical help, in that forum, I do not see an alternative. Each syndrome and disease, each type of disability has its own website but they do not deal enough with general practical advice that parents need to have, like having a pulse oximeter in the home, monitoring respiration during sleep, suction machine and how best to use it. 

When Segev was last in PICU I had to stand, literally, by his bedside for 17 hours and then catch 2.5 hours sleep because their suction protocol was once or twice a shift! Each and every one of you has a thousand stories like this but if we don't share the information and organize it so many people are left out in the dark. 
The doctor's assume someone else is giving instructions to the parents. If you have a different experience I would love to hear it. Personally I have gone through 11 pediatric neurologists. The best one was the guy who at least admitted (he was the chief pediatric neuro for a major hospital) that he doesn't know how to read an MRI. Another one was excellent, experienced chief neuro, a real listener, with care in his eyes who couldn't prescribe for my son since hospital protocol forbade him interfering with his subordinate who was given the case! 

It goes on endlessly. How about the Professor of Pediatric neurology whom I explained to what the latest major research and results were for VNS implantation and he said, "Where do you get your information from? This is great because later this week I have to give a lecture on VNS to the staff physicians?" WTF?! (That's webspeak for Why To Frown, isn't it?)

I feel like I am living in a dream most of the time with existential experiences like these. My connection to the world is on the net and writing this blog has allowed me to further widen my gaze, coming into contact with so many parents with questions. Do I have the answers? Perhaps a few, but I know that they are out there and waiting to be plucked if we can find the open state of mind that many of us had prior to landing in the quagmire of care that our children demand of us.

September 22, 2010

I can ramble.

Equal rights, what is that? Certainly not "sameness", because we all have different needs, some more eclectic than others. Equal rights = equal standing? Some kind of law of averages? I don't believe in this, this is to outrageously deny our differences in not only intent but certainly ability. For my son to be made average would require an army of workers, medical staff, therapists, assistants, teachers, a budget of a million dollars. To raise up Segev to the level that he would be able to interact with society without the need for me to be there for him 1440 minutes per day, would require the assistance of that knowledgeable and well trained and patient army and enough technology to bankrupt a small country. 

What is it that I want for my children, healthy, normal and sick and decrepit, alike? I don't want them to be at a disadvantage in life. I don't want them to be taken advantage of, treated unfairly. They will be, at some point in their lives, that is quite normal. But I don't believe that they have the right to be treated fairly. You may call me a cynic, but rights are something rather ephemeral in society. There is a long history by the way, of certain people appearing to have more rights than others, although occasionally that is a matter of confusion over initiative, I believe. 

I was standing in a long line at the drugstore with only one cashier working. One woman came out of the middle of the line and told the cashier that there was a need for another till to be opened. Promptly another employee came and the woman who had asked for this immediately stood as first in line there. My immediate reaction, with my proper Calvinistic Dutch genes, was to think, "such nerve! How dare she, others have been waiting much longer". And be certain that there was more than one woman who verbally lambasted her for jumping the queue. But before I had my turn I had already changed my mind, looked at her in admiration and thought, "lucky devil, her husband. Now here's a woman who knows how to take care of things!" Her answer still rings in my head, "I'm the one who asked for the till to be opened therefore it is my stake to be first in the new line."

So Segev can never be of equal standing in society? Unless a resurrected Isaac Asimov, acting as God, creates some fantastic world for my son, Segev will not communicate and cannot contribute to society the way average people do. Thus, everything that is done for Segev, everything that I want for Segev, must be tempered with the knowledge that my list of priorities will never match society's priorities. Exceptions, in society, similar to traffic on the highway, are tolerated insofar as they can be absorbed back into the whole. 

Traffic works because there is cohesive movement of the masses. It also does not flow because of rules, laws, regulations and the masterful training and abilities of its drivers. It flows 99.9% of the time because small adjustments are made and anomalies are absorbed into the mainstream. We have the theoretical framework to guide us but if we were to keep proper distance at all times, were always to wait to be allowed to lane change, never accelerated to make a light nor stop abruptly or any of the thousand deviations from theoretical traffic perfection that we do every day, traffic would grind to a halt. 
Now put a whirling dervish into traffic. Taking care of a severely disabled and chronically ill child seems to be too much for the system to absorb; he is much too dynamic, the rules change abruptly, medications go into the trash to be replaced by others. Treatment modalities are tried and discarded or ended for lack of funding. How much does that treatment actually help? How much can it actually contribute to your child's happiness? Or comfort? What about how much it can contribute to his actual health?  Adjustments in a kind of macabre dance are constantly being made. The moment you believe you have balance, things seems to swirl out of control. You have no rules to cling to and your "traffic cop", your physician, simply cannot keep up with the complexity. 

Even to quantify achievements in such a child borders on the impossible. Don't forget that I am not speaking of mild health issues, the child is not physically disabled, he is extremely or absolutely disabled. He is not mentally disabled, he is extremely mentally disabled. He is also chronically ill with severe and sometimes life threatening exacerbations.  As with my Segev, he may be taken care of at home by only one parent, no place existing that can give him the treatment he gets at home. No in-home help, no respite care.

I have the honour of having met, through the net, parents who are in similar or even identical situations to myself. We are into extreme parenting. We are the bungee jumpers of parenting. I wish I could patent my methods of helping Segev, establish protocols and universal concepts of care that address situations like I am in with Segev. The the day to day problems extreme multi complex children face are varied, the nuances of treatment tailored to each individual child, where there is no relenting in the minute to minute treatment. Any slacking, any lapse in judgment is immediately penalized whether we are aware of it or not.  

I do believe in taking initiative, like that woman in the drugstore: how do we put ourselves first in line? We need to create the circumstance for that to happen.

What is it we want? Do we want sympathy, or acknowledgement of our many battles? We want someone to take away our uncertainty, I believe. Are we doing the right thing? For how long will my child make it? Will I get help? Does anybody understand what it takes to "raise" such a child? Am I slowly going insane? Will I get back my health after my child is gone? Will I outlive my child?

Moving towards solutions?
These deep questions can be discussed and argued about, practical solutions though may actually help mitigate some of that need.I look with a sense of irony at a country like Holland, which can easily serve as an organizational model for the caring of disabled children in the community, even though it is also at the forefront of ethical debates about euthanizing disabled children. Nevertheless it is that model which I believe should be emulated as a starting point for the best care. 

Some general thoughts on the care model: 

An improvement that I see necessary in order to integrate seamlessly with treatment and research into ailments (such as seizures) is that especially the daycare facilities would serve as a medical hub to collect observations and treatment reports that would be fed into a database system that included questionnaires filled in by parents on a weekly or monthly basis. 
There are so many elements to caring for severe and multi complex handicapped children, especially since most are also chronically ill.
The degree to which a parent is also the main caregiver should necessarily be taken into account since their state of mind and physical health is essential for properly caring for their child.
In the mean time on the Facebook page "extreme multi complex handicapped children" I will continue trying to encourage dialogue to discuss practical issues, certain ideas, particular experiences that can be exchanged so that we can, as the main caregivers, increase the quality of treatment for our kids.  

I am a serious man

I Still wake sun serpent sea,
waffle net fervent as me.
Caress that hat, she flops on the sand,
tell me a tale then bite my hand.

Carry me aboard that chicken concord,
it's all a bit too merry for me to afford.

Handle candle sandal and swig,
I fought a barracuda with only a fig.

Dance a little, dance some more,
the kettle comes a-calling on the English seashore.

I cast off all yoke to yonder to prod my life to zoo,
I paddle paddle hardy hardle albeit without canoe.

September 21, 2010

I thought I would take a break from the tedious philosophical posts and pontificating, to let everyone and anyone, know how Segev is doing.

He seems more capable of reacting these last two months. He is less in a constant state of stupor which may be attributable to the fact that I now divide his medications into three doses instead of two. He is more vocal but this is typically followed by an exacerbation of his bronchiectasis, so he is sick more often as well. His seizures are not stable, some days he has just under a hundred, some days way over. Recently he had a period of more severe seizures as well as medium sized ones coming in clusters, which is unusual for Segev. This has receded over the last two weeks without apparent reason.

His intestines are always a problem: he actually had a few months that were dreamy, without pain for the first time ever, which went into two and a half months of diarrhea which has transformed in the last two weeks into Segev's usual extreme discomfort/screaming from irregular peristalsis. Vomiting is a continual threat which often responds to extracting copious amounts of air from his g-tube, multiple times each day. In the last two weeks he has vomited more than in the last year. His sleeping pattern is less regular as well.

I believe that he has started seeing, to some degree, after twelve years of not reacting to movement or objects in his field of vision. This is truly astounding.

Right now I am slowly finishing his evening bolus of the ketogenic diet, each meal prepared from scratch by me and he is lying asleep, fidgeting, occasionally waking with a seizure and then instantly going back to sleep. I've had to suction much less today, perhaps only fifteen times. It looks like the pendulum is swinging and I'll just catch that momentum and think again about the dozens of parents like me that I know about, who may have and especially those that may not have, a few quiet moments to feel the air fill our chests and let us regain our calm and our strength.

Simply cannot leave the euthanasia issue alone*updated*

*updated at bottom*
Someone was born, millions of years ago, who needed much longer to be cared for as a child. His maturation was much slower than that of his peers because due to mutation his brain was larger or more complex* than others. Allowing himself greater distance from his instincts but greater development of long term thinking and thus requiring more protection. But he was protected until he himself could establish his intelligence in the community, being more inquisitive possibly, or simply a better problem solver. He became chief or important in the community in some way. He then proceeded to produce progeny and having established a precedence his progeny survived and intermingled with others, benefiting the gene pool, creating a move forward in evolution.

Yet children are born without most or part of their brain, some even having high levels of function. We know of autistic children who, since other areas are apparently not accessible have extremely high levels of function in particular areas. These facts alone should indicate that the non communicative vegetable-like attributes given to children born with severe brain damage is not scientifically based. 

Have we the means, technological or otherwise to properly assess what goes on in the brain of such a non-communicative child? They are certainly no jump forward on the evolutionary scale but I have no doubt that anomaly is at the heart of evolution. That, aside from chemical imbalances or exposure to toxic substances causing the deformation in structure and function of extremely disabled children, in itself cannot be an indication that their lives are worth less since we are not presently capable of assessing the meaning of their level of cognizance. Indeed can anyone believe how we define cognizance today will remain static?
But more so, there may be elements of understanding present in the non-communicative brain which have tremendous value. If we will ever be able to access these elements is entirely irrelevant to the notion that the extreme multi complex disabled child has less of a right to existence a priori.

I am not suggesting that such children hold some secrets that will advance evolution, let it be clear, but our lack of present knowledge must necessarily be considered when making claims of value, when staking a claim of moral elitism, as though the decision of quality of life can be based on cognizance. When we establish clearly, as Peter Singer has, that we know what cognizance is and that therefore we can move along to creating guidelines of neonatal euthanasia based on physical attributes of suffering pain, we remove from these children their ability to be human beings and transform them into biological units in some science fiction movie. 

If we talk of the neonates "suffering", though, we are inferring that they are somehow aware of their pain. But such awareness requires being conscious of oneself. Others might argue that a baby's reaction to pain is merely instinctual. Perhaps it is. Perhaps not. How do you know? Isn't pain a stimulus? And isn't the development of the brain, however truncated dependent upon stimulus? 

Pain can be sedated. Unfortunately some forms of pain are so great that the sedation also results in sedating the conscious mind. So now you have eliminated the conscious mind and from there it is rather easy to make life and death decisions about the individual; "he is no longer conscious so we must decide for him". 
Often these discussions look to the most extreme cases in order to establish their protocol. A child is born with the most extreme of disorders with a known(?) life expectancy of a few excruciatingly painful months. But they may represent only a minute fraction of the cases where factually, establishing life-expectancy is as much defined by the exceptions, as the rule.

The discussion is relevant to all disabled children born as such or becoming disabled later on in life due to the fact that when policy protocol defines extremely disabled children and insufferable pain without inclusion of the wider sense of quality of life as presented by the experience of parents of such children any such definition will and always has been subject to alternate interpretation by medical professionals. 
In other words, once you have protocol for such ill babies a grey area will establish itself where these elements are open to discussion; what is insufferable pain to one parent is not the same thing to another, despite that the protocol established was supposed to have done away with these very discussions! Once society "moves forward" to establish such protocols, and they will, while trying not to sound like an alarmist in saying this, I believe a much wider population will be at risk as society accepts norms previously not accepted. 
Fifty years ago, openly gay marriages would have resulted in complete ostracization, if not the death of that couple. Values do change, people. Society is not static and these discussions, that we are not actually privy to,  will alter how we perceive what is acceptable in the future. 

There is a struggle for handicapped people to gain recognition of their needs as members of society and perhaps the "ethical individuals" will continue to begrudgingly  bestow them with more standing. They can be a very vocal group after all. 
But how difficult is it to convince a parent that their child is not viable? If he is born with already failing sight, missing parts of his brain, parts not being in their proper place, unable to speak or sit or even move voluntarily, with a "life-time" of twenty four hour intensive care and endless medical procedures and pain waiting for him, how difficult is it to suggest that such a child would be better off dead? Some, as counter, might say, "that is all very well, this talk of giving such a child the right to live, but where are you? Perhaps you should take care of such a child!" Well thank you very much, I would respond, that is exactly what it is that I am doing with my life. And please show me, I would like to add, one parent of a severely, even extremely disabled child, who cared for his son or daughter and, after insufferable suffering, having lost that child, regrets having done so. 

Sometimes people will speak aggressively about an issue as though its' resolution is imminent. As if their added severity ups the level of drama since, clearly, we must decide soon if not now. Decisions need to be made, certainly. But which decisions, that is the question. This little niche of parents who have a child that requires the consideration, to fight for its life or assist it to let go of life, should not be railroaded into thinking that our assessment of these issues is complete. Because our assessment of these issues has only just begun.

I just ran across the story of "baby MB" again when researching SMA (spinal muscular atrophy). I had followed it when the news broke in '06 but lost it to my failing memory. You can read a bit about it here and here. The thing that absolutely flabbergasts me and enters into the whole euthanasia discussion is that the mother had to fight the hospital in order for them to keep her child alive! The expert doctors apparently thought that the child was suffering "insufferably" but the mother thought otherwise. Who is the expert in these cases? Should the state (ie doctors and institutions) decide or the parents, who are often seen as "distraught, over emotional" as if being over emotional is a bad thing in such a situation!  But then the following article (here) left me a bit confused about my feelings on the matter, especially the quote from the Father, "nobody wants to have the threat of complete bankruptcy looming over their head. It’s just kind of inhumane the way the world works in these brutal situations.” I don't see it as being inhumane. Insurance companies can barely be expected to make an exception the rule and remain economically viable. I am not suggesting any conclusion here, merely that there is room for formulating an opinion, which still eludes me personally.

*reference for example the brain of Einstein where his glial cells were much more prolific than average

September 18, 2010

Minimal man

Apparently when we are alone it is because of circumstance or circumstance brings about a decision to be alone. We can be sad or feel vulnerable; we can feel scarred and damaged, we can feel broken. Whether we feel strong and independent enough to tough it out or rather express the need for help and accept it, we do so because we have, if not the ability to understand what has befallen us at least the ability to reason, to exchange even if we find it is only within ourselves that we stand, face to face. 

But inherent is the understanding that we are of and to ourselves endowed with a unique identity. So I wonder, when a person who lacks or appears to lack that self awareness, what our reaction should be. What do you feel? When that person is the child that you helped create, your perspective necessarily convoluted and gaining levels so deep, you will never see bottom. The Child not only helpless but inherently pure, capable of no ill will nor misunderstanding. 

It is that seclusion of our child which bothers us, that at very best there is a severely broken connection, no natural ebb and flow of the world out there and ME. Sometimes we try to mend that catastrophic joining and the veracious spirit allows for such. Yet our bond is not staccato, though frayed. Not a whole mirror, yet shards. We feel that they have lost their way and yet they show us our path, unless we choose our ignorance above all. 

We protect knowing that we cannot. Live with the hope that this is indeed living. The soul shivers, from cold as well as uncertainty, uncertainty our only flame. The reverence of life distilled from each moment that we travel this path and hope it will quench a child's thirst though I know, his cup runneth over. 

I feel shame that I cannot give more as though there exists some utopia, something more than what there is, something I have not yet given. I have seen this connection from up close because I have looked inside of myself and finding that my son is there with me I feel an awkward intimacy that blinds me. 
We are, after all, not one spirit but distinctly two. How did I let myself fall into such a trap? That I could not distinguish myself from him? To restore order. To accept that lowly perch and see how mundane our struggle, not special.  
His eyes do not search mine for answers, that bitter sweet approach, though my heart aches gladly at the thought that questions occupy his mind. Instead it is myself with blank stare opposite overwhelming answers from his endless eyes.

September 15, 2010


For a number of years I lived with the feeling that there was no magic in the world. Definitely it was a feeling and not an understanding. I did not think or realize there was not really any magic in the world, I felt that the magic had somehow disappeared from me. There was nothing special anymore, nothing unique. 
Fatigue, from years of grinding slavery to the mill of my son's health, is how I explained it to myself. Yet Segev has certainly always been my alternate reality. No matter what happened or how I saw the world, with uncertainty, I knew that at least there was always one singular purpose that could not be questioned: my son. 

When I was six years old I was upset about something one afternoon but it was actually an accumulation of things that bothered me. I thought about all the sad things that I heard about, people dying or being ill, arguing. So I decided that I would become God. I wasn't certain how I would accomplish this but at that moment I knew that to be the only solution since God was omnipotent and then I would be able to correct all of these wrongs. 
Thinking a little more I realized though that if I could think up this idea of becoming God then any person could, especially people older than me, who were necessarily smarter than me. I didn't feel the need to question any further the logic of my thoughts at the time, I didn't try to argue with myself that perhaps there was some kind of system in place on how to become God, or a line you had to wait in or that God would have anything to say about it. Nevertheless my conclusion stood firm that God was now out of the question so instead I would become a writer. 
Yes, at age six I decided I would become a writer, owing to the infallible logic that at least there, in the stories I wrote, I would be God. Deciding what would happen but more specifically, I thought of how I could rewrite the stories of people's lives giving them a happy ending. I remember feeling a little sad at this compromise since I understood the story wouldn't be real but feeling that this would just have to do.

That week I drew a four page comic book, complete with balloon text, about a Frankenstein-like monster made in a laboratory. I showed my father and told him I wanted to sell the comic books so that I could slowly become well known as a writer. He had about a dozen copies made up at his office and I remember the strange smell of the paper, so white and stiff and to me it seemed as though we must be special to have access to this technology to make photocopies. I felt so elated with this new connection I had to the world of grownups, to possess photocopies of my comic book, that I went from door to door asking people if they wanted to buy one for ten cents, which was as much as a real comic book cost back then. I don't remember how many I sold but I do remember that I was a little dejected when some people said no, they weren't interested.

As I would ponder that incident at different stages in my life, what struck me was not the strange and fantastic idea of wanting to become God at age six, even then realizing that it probably wouldn't be an instantaneous transformation, but rather that it seemed to me to be in the realm of the possible.  Of course you might think that a small child believes all kinds of things; Santa Claus, magic, flying carpets in Arabia. Most assuredly as a child you unconsciously look to see those fantastic things in your daily life. That elated feeling of imagining to fly, for example, is an integral part of childhood, allowing exuberant life energy that is bubbling inside, carrying you along your physical growth, to find an outlet. Even grabbing hold of a rope and swinging from the branch of a tree and feeling, if only for a second, that you actually are flying. Magical moments.

Later these things fade. Or not. People say they see UFO's. The mind can play tricks on us, people here reading, parents of disabled children know all about that. Everyday sounds start to mimic ones your child makes. You pass by a room and see his face in the shadows even though he is somewhere else. You wake up at night startled but he is sleeping soundly. So we know our fatigued bodies can cause our minds to distort reality. But magic sometimes creeps back in, whether you want it to or not though some, opposed to the very concept of "magic" will say, it's all in your head.

One evening Segev couldn't get to sleep. Thankfully he had come out of his regular sleeping pattern which had for over a year been to fall asleep at eight thirty in the evening and then wake up at twelve thirty at night and then to begin his day. Back then he would never sleep more than five hours consecutively (today you can't let him  because his bronchii become obstructed). 
But this particular evening he was restless, twitching, moaning. I treated his stomach with vibration, held him until he fell asleep but as soon as I put him down he would be twitching again. For a moment it reminded me of when my two other children were babies, that is to say, for a moment I felt as if Segev was a normal baby, though already seven years old. 

Unfortunately I was exhausted already from the night and day previous and the night before that. I no longer do three nights in a row alone with Segev but back then that was the norm, after all, I was superman was I not? Close to two hours went on like this, putting him back in his bed, taking him out; I could barely focus my eyes anymore. I decided I would put him next to me in my bed and wait until he fell deep asleep and then move him back. Of course I couldn't let him sleep there next to me because his respiratory sensor was under the mattress in his bed and besides I have been known to kick and elbow people in my sleep, fighting adversity not only in the daytime, you see.

I woke feeling disorientated, unable to gain focus and seeing the room spin. I had a strong sense that something wasn't right but my mind seemed completely unable to put any train of thought into motion. I remember that I could not hear Segev's breathing. I have woken many times in a start, jumping up to see that Segev lay in his bed frozen in seizure, not breathing temporarily, but never panicked by his temporary apnea. Consciously, as I lay there those two seconds after opening my eyes, not turning my head yet, I did not remember that Segev was next to me but nevertheless, still lying on my back, my hand shot out instinctively and I began to perform compressions on his chest. As I turned to look at him I could see his limp body, with no reaction to my rhythmic pressing. If any of you have a child who has, like Segev, a minimum of one hundred seizures a day, then you know the best way to insight such a seizure is to jostle your child when sleeping. 
But Segev didn't react at all, he just lay there limp. I didn't even try to better my postion as I realized fully for the first time exactly what it was that I was doing. Then Segev seemed to suddenly rise up and double in size as he his chest filled noisily with air. He stayed lying there breathing quietly and I too finally let go of the breath I had been holding in, dropping back to the mattress with literally a sigh of relief.

part two...

September 14, 2010

Long read

In  Holland euthanasia is taken very seriously, especially for newborns. What this means is that there are constant official investigations in the form of ethics committees looking into aspects of euthanasia in order to define protocol. As soon as protocols are established we can certainly rest easy, detach ourselves or at least distance ourselves from self-torment and proceed to act according to protocol. 

Issues that are discussed for example are the ethical differences between "ending a life" and (apparently preferred by doctors), "accompanied death". Legally there is no difference here, either necessary treatment is halted or material is introduced into the child which causes them to die. The difference in inference for a doctor's conscience is that with "accompanied death", the child was going to die anyway (Singer! Where are you!?). Again, legally as it stands, there is no difference. 
They discuss how euthanasia should only be performed if both the parents and the physician come to the conclusion that there is no option that would allow quality of life, irregardless of the length of time remaining for that life.  Then they state that still, other options need to be looked at and proceed to give the option of sedation in the case of a child heading towards death, "in any case". They also mention, almost as an aside, that with adults this is problematic because the sedation may conflict with that patients' conscious intent "whereas a newborn has not yet developed a conscious identity and therefore no such conflict exists". 

That last sentence polarizes the issue very nicely, from henceforth you will either be a person who agrees with the above statement and thus have no trouble using sedation to ease the suffering and most likely but not necessarily accelerate the child's end or you become a person who stands by the principle that all life is innately valuable and should certainly not be pushed into an accelerated demise.

This sentence then succeeds in sidestepping the real issue for me, which is, the decision making process. How do we decide these issues while our child, newborn or not, lies in a hospital bed, apparently dying, most certainly suffering? Prenatal euthanasia is even trickier where for example in Holland you can abort a fetus up to the age of 22 weeks. So until then, if you discover a serious defect that even threatens the foetus' life you can end it's life, while if it is discovered after 22 weeks you must keep it alive to be born, only to face the decision of ending its life then. Both in Belgium and Great Brittain the law allows for ending the foetus' life later in pregnancy with the objective confirmation of a very serious and untreatable condition.

This drive to dissect a situation and to extract from it certain elements deemed useful that are then to be applied universally expose for me exactly what is wrong with western medical thinking. It mirrors exactly the development and use of pharmaceutical drugs wherein a plant is found to have medicinal qualities, even wondrous qualities which are then investigated in order to isolate the active ingredients.  All other ingredients are deemed irrelevant, even dangerous, and the newly isolated elements are then synthesized for mass production (I'm skipping the step of the testing since that system is in my opinion fatally flawed) and we all know that any synthesized compound, being chemically identical, works exactly the same, actually better than the natural compound. *rolls eyes*

Ignoring in this way the synergistic properties of chemical compounds in a plant, which are never investigated, flies firmly in contradiction to the idea that nature perhaps knows what it is doing in packaging its medicines. Now  I am not a golden-ageist, thinking that we just pluck flowers from the trees and cure cancer. But the synergy model has not been investigated and do not get me started on freely available chemical compounds which show the most promise for treatment but are not developed by pharmaceutical giants simply because they won't be able to patent it.

How does all this fit into the model of euthanasia?  Simple. "Euthanasia can be performed when both the parents and the physician come to the conclusion that no method exists to endow quality of life". The simplified elements of the euthanasia protocols fails completely to address the decision making process. Parents can be heavily influenced by the physician. Conversations are private and then the physician, with signed consent form in hand, passes on the decision. What has happened in the mean time? Are the parents scientists? How do you know to evaluate the cognizance of a child. Do you take into consideration the state of mind of the parents? 
The protocol discussion I reference (here) talks about establishing the prerequisite of insufferable pain, which indeed is difficult to establish, just as difficult as "likelihood of imminent death" as many of you have experienced with your children, but takes it a whole step further and discusses the need to further define the physician's ability to, with impunity, decide that alleviating suffering takes precedent over sustaining life even if that unbearable suffering has not yet manifested itself.  The saving grace is that they conclude more research is needed to determine actual life expectancy amongst children originally expected to live only a short time.

Meanwhile back on planet sanity...the synergy model of medicinal substances, not proven, neither disproved eventually will develop into an amalgamated system where eastern and western concepts of healing help each other. The same should be for ethics in my opinion. This dissecting will get you only so far, afterwards you have to put it all together again into a working whole. The human body is simply too complicated for us to figure it all out any time soon. It took a while to put together, you know. The human psyche is also complicated and looking only at the parts will never allow you to understand the whole. 

When a parent needs to decide to end the life of their child so many things come into play. So what is a holistic approach to this dilemma? Well part of it is the ability to acknowledge that at any given moment we cannot possess all the information, that the decision will necessarily be flawed, as for example "mybigmouth" commented here.  

Also relevant is how we see the quality of the lives of the children who were supposed to die but instead survived. Here you can see a dutch tv program (sorry no subtitles) which talks with parents of extreme multi complex handicapped children as well as medical experts. One mother describes her nine year old daughter as "Nothing. She is nothing", meaning that her daughter has no identity of her own, she is just an automaton. When pressed she says her daughter can sit, pick up a toy and rattle it, pick up a fork with food and put it in her mouth. My God, my God, I wish my Segev was capable of such "nothingness"! To be able to sit. To be able to grasp something on purpose. But what sounds to me like heaven is that mother's hell, obviously.

But we do want to know what is the right thing to do at that moment, don't we. There are two kinds of people though. Those that make a decision and let it be, not doubting themselves, or if they do, find a comfort in philosophy or religion or chemicals, and those that no matter what will cast doubts on themselves. I like people like "bigmouth" who felt lost after the death of her child, the decision that she made, not being certain. I like people like that because I know I can trust them. I can trust them to search for an answer that will never come, but they will continue searching because they are not certain, even after the death of the child. In the searching lies the secret of meaning. 
In the searching we go against the reductionist model of disabled children and Francis Crick's "The Astonishing Hypothesis" where the soul is simply a hoax, we are not more than the sum of our parts.

But if our children's lives, so outside of the scope of average existence and their occluded minds, severely hidden but not entirely lost, does not belong to the realm of myth, then what does? Surely people have not lost sight of the fact that myth is a vibrant, real, driving force in humanity. An integral part of our ablitity to advance, overcoming obstacles?

In Ethical paradoxes at the beginning of life by Jo Lebeer (physician and lecturer at the faculty of Medicine, Univ. of Antwerpen) he says, "The findings of Merker (B. Merker. "consciousness without a cerebral cortex: A challenge or neuroscience and medicine" Behaviour and Brain sciences 30:1 (2007) 63-81 which you can find here) -which corresponds with what parents experience when they know their children longer - that children with a serious multiple deficit can have a form of human consciousness, undermines therefore the theory of Singer*"

These issues all at once are very important to me and yet seem so far removed. I've had to decide on several occasions whether action would be taken to extend my son's life or not and I had no problem making those decisions, even if they went in contrast to the medical professionals'. 
Not because I have a particular religious conviction that gives me the certainty of holy knowledge nor even from the wisdom of those who have come before me, but rather from the uncertainty of what lies ahead, bolstered by a faith in the road we are on.

Let others decide on their protocols, fasten deliberation in iron and hail the new order, I will put my mind at ease, knowing that there will always be those looking beyond what has been established because, whether they understand this or not, truth is not written in stone, truth is alive.

September 13, 2010


Silence is my enemy where Segev is concerned. Quiet doesn't mean everything is working: I have to hear a rasping of his inhalation, the rhythmic knocking of his hand as he seizes, sputters.  As luck would have I happened to be close by the rehabilitation centre that time, though I can't recall the actual driving.

The nurse looked fairly calm by the time I got there, much more I'm certain  than when she was called to Segev, as I was told he had already turned blue. She began resuscitation protocol and someone attached the probe to his finger. It read 50% oxygen.

But Segev came back that day.  I tried to show no emotion as I examined him, asking questions and then picked Segev up, carrying him to the car. I felt no relief, having passed through similar drama on several occasions.

I wish I had though. I wish I had smiled the concern off of my brow and hugged the nurse and laughed aloud, letting the air into my lungs as though I had held my breath under water. But I didn't because I was overly concerned with the details of their treatment of Segev, trying to determine if proper protocol had been followed; was it luck that Segev came back or because of their intervention?

Finally, after a few hours of intensive treatment of Segev, or after finally that the pain relented or the cluster of seizures receded I would leave Segev on the couch, both of us wrung dry, to rest quietly, perhaps watching him from the dining area where I was able to finally sit for a meal with my other two children . Picking  Segev up when he is sleeping has always been a consistent way to cause him to have a large seizure but I felt Shoval and Noa were becoming accustomed to this state of affairs wherein after Segev's immediate needs had been met and he just lay there quietly becoming this entity on the couch, strangely distant, hardly there. They needed to feel a better connection to their brother, somehow, that would approach something normal even though he could not react to them in any discernible way.
I began to make a habit of placing him directly into his wheelchair as a difficult situation found its resolution, to rest there and bring him close to us when we sat down together at the table, in itself a rare opportunity.

Like a glass knocked off of a table rushing toward the floor but picked out of mid air, the image of it shattering into a thousand shards already in your mind, yet placed once again on a secure perch, is it possible to aggregate all the worth of his life and have it grace a singular moment in time and yet feel paradoxically empty?

He was sleeping one particular time, close to my chair at the dinner table. Automatically I looked at him every half a minute or so and thought to myself ,"he must be deep deep asleep", since his chest moved ever so slightly as he breathed.
We spoke only a little and were eating the meal I had prepared. I looked again at Segev. It seemed to me that the movement of his chest was slowing down. I felt for his pulse on the carotid artery. "Look Kids, Segev's breathing is stopping" I said as I rose from my chair.
I could no longer see any movement coming from him but waited to see if it was just a moment of unclarity of my eyes or I hadn't felt the pulse properly or perhaps I would instantly see Segev take a deep breath in his sleep, like happens so often to many people.
But nothing happened, there was no gasping for breath. There was no instinctive fighting to counter what his body had chosen not to do. His lips had already lost their normal color being replaced by a purplish hue, all in a matter of seconds. I began chest compressions, jostling him in his chair and ready to press my lips to his.

Without waking he began breathing again and his colour returned to normal and I noticed a heavy, tingling pressure on the back of my neck. This was neither Segev's first case of central apnea nor his last and in my head I cursed all forms of silence.

For that moment I felt like a zombie might, pressing onwards with hollow intent or a lack of understanding of all intention.

Still, despite a dramatic moment to cling to I focused on the gain of those tiny installments for the children that have claimed momentum through my persistent suggestions so that sitting at the table was joined by saying "goodnight" to Segev, "good morning", Noa explaining to him that she is heading off to school and through the years so much more.

At some point Segev became their little brother again, he became a person rather than merely a chronic illness. From that point on, despite daily struggles for survival, I was able to express more emotion, find reason to rejoice and give thanks without considering whether there was just cause.

My travels into the night and day

Segev was unresponsive Friday, his hand was stuck in myoclonic limbo, indicating his lungs were full, unable to disperse the accumulated phlegm since his chest and lungs are not connected and thus each breath shallow. The hand is often accompanied with a twitch of the left corner of his mouth, but not this time. All the intensive treatment outlined elsewhere was having effect, the massive amounts of bronchiectic phlegm remained white, but this was the third time in two weeks.

Saturday evening he had a medium seizure of a type that he hasn't had in several years. A laughing seizure, which doesn't stop. A few drops of Midazolam intranasally had no effect. More. And more. I finished an ampule and finally it became less strong, diminishing to arm, head and leg jerks that lasted for some time. His oxygen was fine. I skipped his last meal (midnight) and put him in his bed which stands next to mine. I gave him plain inhalation since his last medicated one had been a few hours prior to bed.

The pulse oxymeter woke me after about an hour because of his heart rate; it was 168 and he was deep asleep. I waited.  Then his oxygen level started dropping, down to 81%. I did some physio but it didn't help. I turned him to the other side which usually has quite an effect but still nothing. . Suddenly he coughed up a cupful of phlegm that completely blocked his airway. The suction machine could barely handle it even as I increase the strength and with the extra large diameter tubing. And again, and again.

The cough reflex transformed into a kind of seizure that he has never had before. Every appendage was jerking rhythmically in another direction, including his head. The pulse oxymeter could no longer get a reading but I knew it wasn't good. I broke open another glass ampule of midazolam and proceeded to give him. Over the course of 35 minutes I finished this second ampule.

So that you understand, this is 5mg/ml which is like giving 50 mg of diazepam (valium), and it was his second one in a few hours. I carefully watched his breathing as the seizure became less and less... His heart rate also dropped as a result of the midazolam and things looked relatively calm. He was unconscious from the narcotic and I hoped this would last for a few hours so I could sleep a bit, having trained myself to put worry aside enough, in moments such as these to doze off, relying on technology to alert me to certain changes. It was now four in the morning and I proceeded to sleep intermittently, rising to turn him and perform suction both as the phlegm naturally drained from his lungs  pooling in his mouth as well as when he coughed, which was about three times an hour.

At seven I got up and began giving him his medicated inhalation, performing chest physio (a combination of tapotement and compressions) and preparing his food. I transferred all of his equipment to the living room and his O2 was fine and he even reacted a little to my singing, the way that I always greet Segev in the morning.

At 10:30 I transferred him to his mother's house, ran some errands and went off to perform five housecalls near the center of the country, about an hour's drive from home. In constant contact with my children and Segev's mother to get updates, make adjustments and give reminders of the treatment regimen. His oxygen was stable and he had no further seizures out of the ordinary, sleeping most of the day.
I returned home at nine in the evening and contemplated going to the local gym as though I seriously could get up and have a workout. One final check to see how Segev is doing and then off to sleep; tomorrow morning Segev arrives for a forty eight hour shift.

September 03, 2010


Dear God, dear God, dear God, dear God, dear God, dear God, dear God, dear God. There is a different emotion in each one of those 'dear God's. A different expression of feeling. Exasperation, melancholy. Dear God! Triumph!
On paper it is difficult to read into that unless you possess some basis of shared experience, so that you can understand it. I am certain the extreme multi complex handicapped child would like to use such a phrase in just so many ways. As I'm certain he does. He doesn't speak of course. He has only a moan, or a slight eye movement? In that he expresses his emotion. But we can't read into that. 

Then of course there is conventional thinking that such a child's emotional range, if not charge, is flattened by a capacitative dysfunction in the ability to build a framework or context for emotions.
What is love for the autistic child? Let alone for the child so developmentally truncated that there is no true communication to speak of , no way of expressing anything beyond pain and happiness. Black and white. This reminds me of Ashley X who, according to her Father, had no cognitive development. That was then; I wonder if he feels the same way now. I am concerned with my son and all children who cannot possibly express how they feel and whether or not they are capable of  feelings.
How do you measure it? I know people whom are convinced their dog has enough personality traits as to qualify them as true members of the family. 

Part of the complexity is your becoming integrated with an extreme multi complex disabled child's being. Time, love, treatment, hardship will bring this about. Everything moves around in a circle, one problem becoming the next, or more precisely one solution is engulfed by the next problem.  The pain you feel is in part due to the lack of communication but you compensate by feeling the bond between yourself and your child as stronger ever still. You naturally take pride in the battles won, the scars have earned you bragging rights since there are no medals given.

What will happen in the future, you think? There will be fewer and fewer disabled children because technology will allow us to identify and abort or perhaps correct them before they are born? Or will there be fewer as selective euthanasia becomes accepted (why is that even an issue when abortion is a form of euthanasia?). Or will there be more simply because of the massive population growth we experience or more because the technological societies we have built create overwhelming amounts of toxic substances and electromagnetic disturbances which the developing foetus has a difficult time dealing with?
So many factors and of course many more to mention. Life and death, surely not a black and white issue, not possibly a black and white issue. Where does this leave us if we want to investigate communication. I can't communicate with my ex-wife, my mailman hates me because of my dogs and yet I am certain that I have some kind of mystical connection with my son who cannot speak and does not have the capacity for voluntary movement. He is a vegetable. Isn't he?

Yet I taught him to stick out his tongue. No he can't see but I was able to teach him that. He can do it enough times to show that it's not some kind of coincidence. My son does not blink. A fly can land on his face and start poking around in his eye and he won't flinch or even move his eye or react in any way. Yet when I ask him if he needs to defecate he will slowly lower his eyelids and raise them again. I did not teach him that. No one did. He made it up. He has said one word "Aba", which is one the first word a baby learns to say in this country, like dadda or mamma. He has said that word a total of about 15 times in the last twelve years. Fifteen times in twelve years.
I know that he knows what it means when I ask him, "are you hungry". Before he was fitted with a g-tube his reaction to that question would be to smack his lips, so I know he understood the connection. He hasn't reacted to the question for years now. And his "yes" of the eyelids is limited to just a few questions altogether and only one question for one answer on any given day. Missing two thirds of his cerebellum, Segev is not into repetitive controlled bodily movement that could be construed as communication. That's the extent of his ability to communicate. 

But, he is not a vegetable and hardly a zombie. He is more like a barelycognizantmotoricalyfutilelyunderendowedwatchamacallit. Or something. 
Communication. I don't think we are going to get to the bottom of this very soon. What is communication? We know. Or we think we do. We know how to categorize it. What do you do with the barelycognizantmo....uh.? They can't be categorized. So do we need a new set of criteria? New categories and sub-categories. Oh the doctor's would love that. No more need to communicate when you can categorize. Ship 'em off to their category and all is well. Having found their rightful, comfortable little perch, you see, their category. 
When your child is in this position of being, how is a category going to help?* Apparently there are mysteries out there in the world. And you know what is so striking about a mystery? That it's unknown, unfathomable, incomprehensible. And the one truth about mysteries is that there will always be people who are preoccupied with dissecting and categorizing the elements of the mystery with the certain knowledge that their catalog constitutes an explanation of the mystery, a solving of the riddle. 

And there will always be people, however few they may be, that, while they have the capacity to dissect and categorize, will choose to live in that mystery with the wholehearted faith that there are things we are not meant to pull apart and look at under the microscope because in the living of the mystery lies it's very value.

*outside of Holland I have not seen the phrase "multi complex handicapped children", used. I first started thinking of adding the term 'extreme' a few years ago and I do believe that for the sake of dealing with authorities that such a delineation is necessary to separate those children whose needs exceed most others. This may lead to such changes as the "personal budget" I mentioned in my entry "Prometheus". 

Mission impossible

It is April 1998. Segev is at home. His first month of life was in hospital, there was no diagnosis, I had refused the drugs which will sedate Segev.  Unable to work for almost two months, some parents, unbeknownst to me, took up a collection to help pay for my daughters kindergarten. The hospital refused to order an MRI and finally we decided to try to go it alone, at home. 

Segev would actually start to develop hand and eye coordination but still had to be fed through a naso-gastric tube. He had some scary large seizures throughout the day but managed to sleep about four to five hours in the evening without them. Waking again at twelve thirty at night to start a new day.

He hadn't had his first episode of central apnea yet, he could sit in a baby carry-seat, lift his head a little and turn it.  And rarely he could actually reach for a mobile dangling in front of him. 
One evening he was out of sorts, already we could distinguish some patterns with him, he was six weeks old. There was low grade fever during the night. The next day everything was gone. No more hand movement. No more seeing. No more gurgling noises. No more sucking. All in one magical moment, taken away like some dark angel had decided to cut him low...

I am back at work, driving to see patients about an hour and a half out from home. My cellphone rings and it is our pediatrician. He tells me that they took Segev's EEG to the chief neurologist for a consult and the conclusion is that Segev has Hypsarrhythmia, a fatal type of epilepsy I am told, while still driving. He tells me that there is only one known treatment that can have any effect at all and that is to give Segev massive doses of Steroids and ACTH. 
How massive I ask. About ten times what you would normally give an adult, he responds. I see. I don't know if it was because of a long pause on my part, perhaps running several scenarios through my head but in any case he spoke rather tersely, "you realize", he said, "that every hour you wait brings your son closer to death?"  

Wouldn't it have been a funny story if then I'd run into a tree or something, from shock? But no, no accident. I responded with this; "Do you realize Doctor that you are putting the weight of the world on my shoulders all in one moment? And without any certainty whatsoever I must right at this moment decide on a treatment that it in itself could kill him?"   
"It's up to you" he said. Yes I know it's up to me, I wish to God it weren't. I felt I was panicking, I wanted to give in and tell him, yes yes you are the doctor, but something stopped me. Instead I did just the opposite, saying "I cannot make an instantaneous decision about such a matter without knowing more about it." 

I didn't drive home, instead I drove to my friends house, where there was an internet connection. I got there around 5.30 pm and finished my research at one thirty in the morning. I explained to Segev's mother that the treatment was only successful in 3% of cases and that all other children died, some because of the treatment. Three percent, to those at all familiar with medical research protocol and statistic analysis, is insignificant. My son had a 97% chance of dying, either from the illness if the diagnosis was correct or from the treatment if it was not. To the parent of one of those three percent the treatment is of course a miracle and a Godsend. To me it wasn't and I did not feel I could consent to such a procedure.

That night we did not sleep and I thought about how could  I solve this, how could I save my son after all? 

The treatment sounded to me like plain luck but I realized I am no expert; intuition and study will only allow you to reach so far. Searching for an answer I recalled that I had been given the name of an old timer pediatric neurologist by someone, that he had heard about years before, regarding some difficult cases. I wrote everything down back then and after a little while found his name but didn't know whether this "old timer" was still alive and if so whether he still received patients and even where he worked.
That morning around eight, Friday morning,  I began calling hospitals. The first hospital I called: "Pediatric neurology department please. Hello I was wondering if you've heard of a Professor Garrat?" The response was immediate, "yes, yes of course. I happen to have seen him go into his office a little while ago."  Stunned silence on my end. "He works there?" Well obviously Eric, you idiot, didn't you hear what she said? I thought perhaps I had imagined her saying it after a night without sleep, a night where the certainty of my son's death was at least 97 percent, the worst night of my life.
She continued, "Yes of course, he is head of the department. You're lucky if you want to speak to him because he never comes in on a Friday, it's his day off." Stunned silence.

I speak to the doctor and explain. He tells me that he only came to settle some paper work since he is going on vacation and at eleven O'clock he must leave for the airport but, if I can make it until then he will see me due to the severity of the case.
It is eight thirty in the morning. The hospital is between one and one half hours drive away depending on the traffic. Plenty of time. "Of course I'll need to see the EEG." he reminds me. "The EEG was done at the local hospital" I explain, "they don't release a copy except for the attending physician". I spoke aloud but it seemed to me as though the conversation went on in my head. "I'll get the EEG and get to you in time, Professor." I hear myself promising. 
The EEG department is a half hour drive away. I do the calculation; eight thirty now, back home at nine thirty, pick up Segev and his mother and arrive at hospital around quarter to eleven. No problem, we can make it.
I call the hospital and ask for the EEG department, already thinking of how I'm going to swindle a copy out of them."That department does not operate on Fridays" the hospital switchboard tells me. I say nothing. "Hold on a second, I'll try to transfer you anyway" she says.  I have a problem picking up my stomach off of the floor. I can feel the frustration brewing, anger or despair soon to follow. Someone answers the phone. I recognize the voice, it's the EEG technician, I can just see his massive head of wavy silver hair. I tell him the story. I tell him how grave the situation looks and the limited time frame I have. "You're in luck, I just happened to come in on my day off" he says. "You know I cannot give you a copy of the EEG, right?" he continued. Yes, I say. "Be here in half an hour and it will be ready for you." 

I speed to the hospital, through the winding hills of Haifa city streets and on the way back contemplate the following scene: I am being dragged along the floor as i hold on to the professor's pant leg, waving the EEG with my free hand. A security guard begins clubbing me as the good Professor makes his getaway to the airport never to be seen again. But the matter is most grave (interesting word, grave) and I return home to pick up Segev and his mother. I am certain that the neurologist must see Segev to correlate the findings of the EEG. I am traveling 140 kilometers per hour but I am an excellent driver. We arrive at the parking area at 10:45. We jog to the department and are, still jogging, pointed automatically to the Professor's office.
I enter the office without one word and place the EEG rather roughly on his desk. He peers at the first page. I sit down, nearly out of breath. The second page. The third page and the fourth. Thirty seconds have gone by. "Who is the idiot who said your son has Hypsarrythmia" he says. "Ridiculous". I am only too happy to concur yet still feel incredulous as well as so, so very relieved.

Mission Accomplished.