September 25, 2011

Ambling on the grassy knoll

This is a minor attempt to find a smoking gun in an interesting “Disability Identity” series, penned as separate yet connected posts by William Peace, Claire Roy and now Phil Dzialo, so that a finger can be pointed at the culprit. Perhaps an undertaking that goes over my head but since coincidentally, while doing some blog maintenance, I ran across a draft of a post written in July that, for whatever reason, was not finished (but not forgotten) the idea that it might illustrate where I believe some attention should be placed in the discussion crossed my mind. Time constraints in editing my show as a somewhat rambling style. 

The idea of disability identity of W. Peace, as I understand it, encompasses that of the perception  of disabled persons, the label that they carry which is invariably something negative (even when proclaimed to be positive, see "Overcoming disability") and the empowering stance of self-realization that should first and foremost come from the disabled person themselves, as a struggle for their human rights, leading to change the perception of that identity.

Claire argues that her daughter’s form of disability precludes her from having such a perception of self, seemingly putting her in another category.

Phil presents a philosophical point of view in his response, which is not to say it isn’t based on years of utterly pragmatic experience in dealing with his son’s extreme disabilities (or physical and mental compromise as I like to phrase it).

So we have how others perceive difference (the label of W. Peace) and the public ramifications of such attitudes as well disabled persons' problematic perception of themselves, in Claire’s case by proxy of her daughter, though Claire clearly states she does not know how her daughter sees her ‘disabled self’ (never the less see Claire’s soon to be famous statement “Disabled identity: it f**king sucks”), and there is Phil who speaks (“A person is not what they possess, what group they belong to or what they believe”) of the intrinsic value of human nature which is often made ambiguous by the appearance of difference by association. 
On occasion life brings us little anecdotes that allow us to hone philosophical discussions in the social arena. Such an example comes with the draft of my July post:

          "The world's strongest man competition, where these hulking figures, training in mainly powerlifting techniques but with strange objects such as cars, poles and tractor tires filled with cement, is not a sport. At least that is what I was told by a youngish, very athletic looking chap at the local gym. "If you can't run a kilometer and back, your not even an athlete" he said.  A woman, exercising next to him, disagreed and chimed in that “different people are made for different things”. 
"What?" she asked. "So a person who has a disability but participates in athletic competition is not an athlete?"
He wouldn't be swayed. "That's different, these strongmen had a choice. They should have chosen a proper sport: swimming, like I did."

Skewed perception leads to prejudice.

Life can be hard to all kinds of varying degree. When the parent of an extremely physically and mentally compromised child tells of how difficult their lives are to let people know, because when you are stuck inside your home for extended periods or always rushing off to hospital or testing, people generally don't pay attention to your absence. You need to attract some attention because sometimes its just too difficult to do alone, physically, never mind the emotional side. Others simply need to share, to let the 'regular' folk know that their son's cerebral palsy is a daily struggle. Learning to walk properly not being a given or their daughter's drop seizure a harrowing experience each and every time, without exception.

But to those that don't get it such an explaining parent is seen as a complaining parent. In the end you are left with a process of complaining because the inability to relate to the subject properly has erased the relevance of context and replaced it with a bland generic look at the process of complaining.

We aren't left with much in the face of such behaviour which at best is considered to be indifference. I've tried to explain things to people I have dealings with every week. People who I have trusting relationships with, respectful relationships. But I see that either I am very bad at explaining or people are viewing the situation of my caring for my son through their own frame of experience. Natural to an extent but when something obviously falls outside of your frame of reference, if you care for that person then you will make an attempt to understand.

"Really? Oh, I had no idea!"  And then once again placating silence from the other side. No hand given in assistance, no further interest. "I was afraid to ask", apparently  preferring to leave a person in dire need rather than subject them to the horror of being asked what kind of help they need.

Despite all that I feel that it is necessary, under most circumstances to try and soften the description of life with my boy, Segev, even here on the blog… I feel the pressure to find a more pleasing “hook”, to allow my son’s problems to appear somehow more accessible, so that perhaps mainstream society can relate, to include him.

A little while ago I posted a video of Segev with music in the background. He was happy and feeling good at the time. The music actually played for him while I filmed and though his reaction to music is miniscule he never complains and on occasion he smiles slightly when I put some on.  What the music also did was to cover the noise of his loud, stressed airway. The physical effort to breath was reasonable, I would not have put up the film otherwise, but it was labored and sounded like Darth Vader on a bad day.

A few days later I received a nice comment on the blog post of how good it was to see Segev like that. Unfortunately Segev had that same day already spiraled into a heart-wrenching condition of extreme pain that lasted for several days.

I try to keep things balanced, describing both the positive and negative of Segev's life and my thoughts on issues surrounding his condition. It can be difficult, even for us as extreme parents/caregivers, to fathom what other such parents are going through in their own unique situation and we above all attempt to be politically correct because we have an enormous amount of respect for other parents, regardless of how much we can relate to the particulars of their difficulties. We try to set our prejudices aside, and that is certainly a big thing, a very, very positive thing. Nevertheless respect within the community is one thing but in the end there must be a way for us, this new communicating generation of "disability pioneers" to bring about change where it is so desperately needed."

The underlying problem appears to me to be prejudice.
Prejudice denies respect, doesn't it? Prejudice is based on a combination of quantifiable psychological motivations, personal background and, I believe, a kind of primal fear. Prejudice is in essence a defense mechanism nature has given us in order to establish our difference from the ‘other’ group. We have this instinct in order to give us a better chance at survival. No matter how intricate or obfuscated the outward manifestation of prejudice, at its core is this particular characteristic of a survival mechanism.

If we accept that we must have this conduct in some form though, acknowledging the power of it in controlling, or at the very least strongly influencing, our behavior, there is a sense of responsibility. Through education, for example just as the three blogs mentioned are doing in a most positive way, the perception that there is a threat at all can be influenced.

I know that to use the word threat seems rather strong in discussing the psychology of how ‘regular folk’ react to disability. But there is an effort by some to further deflect a true understanding of the fear by lending a utilitarian spin to the eugenic aspect of the issue.

That argument, that I’ve seen put forward in one form or other in many an internet forum, goes something like this: a stable, growing, progressing society cannot allow itself to be overly concerned with small minority ‘elements’ which in the end will not produce any quantifiable gains for that society and in essence, especially if allowed to procreate, will damage the well coordinated effort to accommodate the main group. Some influential people don't stop there. Some bio-ethicists who, by insinuating that the killing of severely compromised (disabled) babies, or better yet fetuses, is not only desirable but the ‘right’ thing to do, create an atmosphere further making disability seem like something akin to the bubonic plague. We condone a great deal of life threatening thrill seeking behavior because it is a choice. We extend the life of the elderly, chronically ill, especially if they choose it. But when it comes to children we say, 'no, they have no say in the matter', and we take their voice away in a way that can only be described as 'extreme prejudice'.

Of course many people become disabled due to accidents later in life, many without any cognitive deficit. Naturally W. Peace’s approach rings the most true from that particular perspective since he himself is…I was going to put ‘disabled’, then ‘crippled’ but of course his point is that he is disabled only if he is the proverbial apple compared to the orange. ‘Differently-abled’ may seem like a ‘cop-out’ description to some, lacking both empowerment (in the end very few actually want to be ‘different’) and direction (sustainable argument for inclusion in society as partner with equal footing).  A while back in a post I made a point of the relativity of this concept of disability. 
Part of the problem is in my opinion the lack of understanding of the psychology behind the disinclination for acceptance and part because disability has such a wide spectrum that spearheading an issue in a more comprehensive way becomes impossible; my child’s needs are not that of Claire’s, which are not those of someone like W. Peace or, again, Phil’s son Adam. Changing the perception of disability, as Claire stated, is often necessarily a grass roots effort. Never the less, without support from government, broad changes will be lacking. More laws might be necessary but if I understand William Peace’s description of life in the US correctly, there is very little enforcement of already existing laws. 
In the past there have been efforts, with perhaps limited understanding of the needs of disabled, to build institutions, homes, support services. Some of it is quite good. On the other hand many places have been closed down or need to be closed down. 
You could look to Holland, worth a visit for those that seek guidance in how caregiving and rights of disabled could work, but the cultural differences with the USA are enormous. What works in one place will not necessarily transfer well. Change must come at a level of cultural consciousness apparently. An admittedly slow and often incremental affair. 

But I fear that there is a bigger issue here than just identity. Chronic care elderly are much in the same boat. From what I have seen and heard I’d say the boat is more of a dinghy and it's filling up with water quickly.

“Prejudice”, while a very important concept doesn’t have the impact that “Respect” does. Everyone seems to agree prejudice is wrong...and that they aren't prejudiced.  Perhaps respect is the same, everyone believes they are respectful (as long as they feel they are treated as such). 

Still, respect is, I believe, the key. Finding ways to recognize and implement its strategy on a daily basis. Very difficult since I too have my built in prejudices.  For example, as I wrote in response to a post by Phil, I have a prejudice against his son, Adam. Adam frightens me. I am not just saying this. Other compromised children, frighten me. Perhaps because I know just how complicated things can get, just how critical minutiae of assessment and treatment can be, what responsibility is involved. 
But it can also be the appearance. On many occasions I have sat with a room full of children with severe physical deformities (don’t bite me on the choice of that word, please) during lunchtime, while each child was being fed. The staff happily munched away in unison but as to myself I couldn’t bring myself to eat along with them, just physically couldn't do it. It felt like being inside of a hurdy gurdy with a strobe light flashing in my eyes. My brain was simply overloaded with incongruent lines and odours as well the assault of odd spastic movements and sounds. None of it was familiar, despite years with my son, meeting other disabled children and even having had the privilege to treat them. All this points to the following, that sensory input, our perception of lines and shapes when not aligned with known patterns make us wobbly.
That uncertainty immediately allows a kind of self preservation to kick in, just as you can see an MMA fighter subject to a flash knock-out and then proceed to try and grapple with the referee’s ankle after the fight has been called, his opponent already celebrating his victory. It shuts down our ability to corroborate the unknown.

So I would be trepid in approaching the care of Phil’s son, because I do not yet understand what his needs are, how to approach him.  I want that understanding. I want to get over my fear. I need to find how to address his needs because it is what I do in my vocation, which finds no better situation to manifest itself than with such children.  I guess that takes a bit of courage, some curiosity, but certainly belief in the one thing which will allow us, human beings in organized society, in this complicated crowded world of ours, to not only survive but to prosper. In searching for avenues, none guaranteed to bring success, what I am hoping to achieve, in a language unique to the severely disabled, is to respect Adam. 

September 23, 2011


*beep* *beep* *beep* * beep* (pulse oxymeter)

Woman at clinic   “Oh my. How, how long has he been like that?”
 Me: (deadpan) “Thirteen years.”
Woman: “Ah. So, so he is actually stable?”
Me: *sigh* “No.”

September 20, 2011

first off, this is a long read and a politcally, religiously (for some) and ethically charged issue. I'm not trying to stir things up but those that will read this might find themselves stirred. It is a complicated issue that cannot be done justice in a single blog post, but since the issue has always interested me I wanted to put to paper some of my personal thoughts on the matter. Since my aim is not to begin a discussion I have disallowed commenting for this one post. Anyone who wishes to contact me privately, knows how to do so. 

This is my dog Sanji. For those of you who love dogs or own a dog yourself, she is sixteen and a half years old. That's pretty incredible. She's a dynamo on four legs and she has seen many, many animals come and go over the years. She is so harmless that she accepted any and all animals the second they were introduced to her; cats, other dogs, rabbits, hamsters, birds.
When she was a few weeks old someone drove to the local supermarket and dropped off a cardboard box with Sanji and her brothers and sisters inside, leaving the box on the road of the parking lot. 
All of the animals that we have shared our lives with, with the exception of one bird received as a gift, were strays found or those that had no home. One winter a stray decided to have her litter in my stairwell. The mother stopped feeding them early on and so it was my job to feed them several times a day and keep them warm in an enclosed area at night. I tried animal shelters but they wanted a donation $75 per puppy to take them in and there were six. It was extremely inconvenient and expensive caring for them but I did until they were six weeks old and then my daughter began finding them homes and found one for each dog. The mother was found dead across the road, apparently she had tried to get into the chicken coop of the neighbor and he had had enough. As the chill of night descended I spent 45 minutes breaking apart the cold hard mud to dig a hole deep enough for her before the jackals would come.

Now I understand that the decision to take in a stray animal can actually be an easy one for many people. I certainly think about the countless animals, because the owners of many animals don't neuter them, that either die or go wild and how Sanji could have died there, run over by a car. Instead she has been a companion to the children and a watch dog. She still walks around outside at night, not knowing what it is she's barking at but she still wants everyone and anything to know that she's on the watch.

The decision whether to allow a child to be born though, is of course a monumental decision. Normally, I can imagine, for many people it is good news to know they are expecting a child. There are many unwanted pregnancies of course, no need to go into detail, and often a decision is made to end the life of the developing child. Sometimes decisions are regretted, for various reasons. Often they are not, as the arrival of a child to a 15 year old,  for example can be quite a catastrophe. A mistake was made, but it is possible to correct it. No more child and life goes on.
So there are circumstances where introducing a baby into the world is...disturbing in the extreme. So much so that the choice to end its life is made.  More or less the same thing happens when during pregnancy, where a couple are actually looking forward to bringing a child into the world, are notified that the child will be disabled in some way. 
Needless to say, the level and degree of physical and mental compromise found cannot be expressed with any real sense of accuracy with the exception being certain known genetic syndromes. What remains is that the vast majority of cases the deviation from normal is either missed or described only vaguely.

Still, parents, in particular the mother, are put before a decision which must be made. The issue of termination of pregnancy is huge in scope. There are cultures where gender selection causes routine abortion. Normal healthy lives ended because they were a boy or girl, depending on the culture.  So this is tricky ground to be treading, since abortion is so widely prevalent in the world. Obviously most people feel that it is well within their rights to abort a fetus. Some need to be placated by legal and medical terminology since knowing that what is growing inside the mother's womb is a 'fetus' and not considered a human being, without a sense of awareness, makes it much easier to terminate that life. The self-gratifying logic seems to end there since the fact that this 'thing' has, if properly nurtured, the potential for becoming a full fledged human being, just like them, just as they were given the chance to live by their parents, seems no longer relevant.

With my son Segev, the impetus for this blog, all the test were done, extensively. More than is required but still, with much of his cerebellum missing and various other compromised structures in his brain, those tests showed nothing unusual and Segev, despite the harrowing near miss of his introduction to life, was born completely normal in appearance.

Many people though are given some advance notice of their child's deviance from the norm and decide that such a life is not worth living. That last bit makes me think of people who's lives were pretty horrible, or ended abruptly. 

Taking a leap forward, perhaps one day we will be able to say with the same vague sense of certainty that someone is going to be abused throughout their childhood and therefore the pregnancy should be terminated. Certain criteria will be established to determine, perhaps through socio-economic statistics horded by the insurance companies, what the quality of life would be for a person and parents will be given some form of remuneration if they abort the pregnancy since an abused child will cost the state a fortune in expenses; medical, psychiatric, prison and so on, all along the lines of "minority report".

Leaving science fiction: How we make life and death decisions about unborn children certainly is changing due to societal perception which in turn is influenced by policy makers, medicos and ethicists who establish models of conceptual thinking from a wide variety of motivational factors. 
How we perceive the value of life is not static despite the influence of millennia of religion. Commerce drives the world today and therefore financial considerations are prevalent in ethics as well, albeit that some ethicists try to  imply that the discussions, such as those that led to the "Groningen protocol" are long over and therefore the established practice is no longer in need of scrutiny (and perhaps even updating).

Personally I look at the issue of abortion as follows, in particular as it pertains to the foreknowledge that something might be wrong with the unborn child; if I make the decision that the life of the developing child is not worth living, I do so with the knowledge that I am killing a human being.
A fetus is, after all, not a seed. He or she is not like a seed of a tree which can be kept frozen for a hundred years, defrosted and then planted, where it will grow into a large healthy tree. Certainly we can't compare a fetus to the seed of a tree. We cannot postpone the potential of the fetus, like we can that of the seed, to become what it is supposed to become. That incredible moment where life was created and moves forward towards becoming a human being has crossed a boundary of no return. The only way to stop it is to kill it and if you take no action whatsoever it will reach its potential: to be born.

What happens after that is pretty much up in the air. But does an extremely physically and mentally compromised child, just born, automatically fall into the category of "a life not worth living?" The decisions that led to the Groningen protocol appear to answer yes, since the doctors and lawyers who discussed various cases leading up to it maintain that certain children will have short and unbearable lives due to established knowledge of the course their defect will run.  
The precedent has been set and is implemented in several countries, carrying with it  a sense of ethics that pushes at the boundaries of what is acceptable intervention in the lives of severely compromised children. Once it was done with impunity, with or without backing from the law, now in politically correct times, the law is made to fit a growing niche of behavior.

The CDC reports that in 2007 over 827,000 abortions were performed. They and also the WHO's reports on world wide abortion are preoccupied with public health: how safe is abortion for the mother. Statistics on age and ethnicity but little on the reason why it was done. Certainly not all reasons should be clumped together. Certainly there must be place to discuss varying circumstances and create an atmosphere of education? But in modern western society, let alone less fortunate countries, the acceptance and support for raising a severely compromised child is reason enough to think twice. And the gaining acceptance of the Groningen protocol is wielding its cadaverous weight as well.

This discussion is of course large and hardly done. My main concern is actually not whether or not people decide to abort a child due to the expected hardships and suffering he or she will incur. My beef is with the fact that the decision is not properly informed, not considering the possibility that life with your child can be hard beyond measure in a million different ways, disability is only one of them. No one can accurately state how long and to what degree a child will suffer, disabled or not.

We don't want to go seeking trouble and pain though, do we?  It's not exactly as if, knowing we will have a physically and mentally compromised child, we rush forward to embrace it, wishing to have as many such children as possible.  We don't go looking for danger and suffering. We don't drive exceedingly fast cars on a closed circuit where the odds for severe injury or death are extremely high, do we? And even if we did, it's not as if anyone would sit down and watch such a spectacle, relishing the drama of a crash?

By the way, is that what happens when other people see a parent, struggling to take care of their extremely disabled child? They relish the fact that it's not them?

So do we go out and climb mountains, jump from those mountains, drag race, boat race, motorcycle race, smash our heads together in football sustaining permanent damage, box, luge, race horses and so on and so forth, risking our life and limb, and as onlookers, drooling with excitement at the spectacle?  So we do all that, so often, with such vigor, stretching the ability to escape death, repeatedly, but we won't give a child a chance to be born? Again, the same chance that your parents took when they let you in the world.
But as I said, personally I don't have a problem with people's decision as long as it is informed. And don't call it a fetus to make it go down easier, because if you destroy that real potential for a human being to exist, you are killing that particular human being. As long as that is understood, then each person makes a decision based on their own conscience.  

September 17, 2011

warning signs

Segev has fallen asleep, for a morning nap. The need for constant tugging and rearranging of his neck collar finally subsiding as he relaxes. What a great moment of serenity that he doesn't have to fight  his own breathing. What a moment of fulfillment as I can ease back into my chair and drink in the beautiful calm. What a bunch of bullshit.

Honestly I have felt proud in being able to see light in these little moments of reprieve or accomplishment. How a smile can ease my anguish and fill me with reneewed vigor. Certainly seeing a clear reaction from muddied water is cause for joy. Just as the ebb of a serious fever, return of proper oxygen levels, the temporary cessation of a series of seizures are seen as a kind of triumph.

How sad that these are the things we can hope for, and nothing more.

But then I fear that if I don't see these accomplishments as something immensely positive I have not learned the spiritual life; I have not heeded the lessons and grown as a human being. Or the opposite, if I become bitter at my lot I am equally guilty. Let bitterness grow into livid cynicism where you are not only resentful of not having help, being stepped upon by life because you choose to care for your child, but come to believe no one wants to help you and that all help is useless anyway, then you have really lost all credibility.

Fortunately I don't feel those things, neither frustration at having to watch minuscule signs of life and communication ebb and flow in my boy's body, nor with lost opportunity on a personal level.  If I weren't doing this life, I cannot imagine anything which would be as meaningful to me or as important.

But firstly, the contrast that this life presents to everything one grows up seeing and knowing is stark indeed and there is an absurdity in the seamless transition of relating to normal everyday things, barely even feeling as if a switch had been thrown when really your psyche can resemble a war zone, if not disenfranchised from normalcy then confused by it.
Each incident with your child, each new episode or even the umpteenth repeat of known discordance can lead to either a moment of quiet or relative respite or hospital, suffering, extreme fatigue. If not now then in a few days time. You take multi tasking to a whole new level.

And  parents who cannot maintain normalcy, be it for whatever reason, they are to blame? "No one is trying to place blame here, Eric". Yes, no one is pointing their finger (no one that matters anyway) and saying, "bad parent!"  But we worry that we are a bad parent because when you have to look with a magnifying glass to see something, just as some myopic might, you will miss a significant part of that constellation of normal life which is the very thing that should anchor us in a balanced state of mind.
Or at least the dichotomy struck by this strange life with a severely mentally and physically compromised child should make it clear that we have such a state of mind, not to lose sight of it.

I know one thing, it can't be done alone. I know because I've tried, with a modicum of success, but since there are no absolutes here but death, we have to try and understand our situation, in part by describing it as some do through their blogs for example, and learning how to deal with this difficult life in a shared fashion. So obviously it seems more important to me than ever to reach out and connect to the right people, listening, so as to hear.

September 07, 2011

Guest post

Phil asked for a response from his readers on a certain topic and is magnanimous enough to post mine as a guest post on his blog.

The coffee was cold

This is not the episode I alluded to on the previous post 

With Segev it all happens at once; These are, I suppose, to be considered mini-crises because when you need to face them alone, they test your skills to the maximum since you worry about not being able to contain it so early in the morning and in the back of your mind are stuck certain details, like his blood sugar being a tad high (125) that morning, the relevance of which is not clear to you.

As the nebulizer mask  covers his mouth continuing to push some medication into his lungs, since Segev cannot actively inhale deeper, he begins to cry from pain. His arms begin to flail both hitting himself in the face since again, he has no control, as well as threatening to pull the mask into his eyes. One hand on flailing arms, the other reaching for the feeding tube and syringe since 99% of the time now when Segev cries from pain it is due to air accumulating in his stomach, which he cannot release himself in the form of a burp. Why it hurts him so much may have something to do with the nissen-fundoplication which released a few years ago.

After placing the tube on his Gastrostomy valve nothing happens. It is after all a one-way valve which should only allow food and liquid in. So I have to coax the air out, first by squeezing the tube. That didn't work so step two is to try and put liquid  through the tube. That didn't work either but finding myself in such situations on a daily basis I can resort to the most successful technique (for Segev), which is to siphon off by sucking on the open-ended syringe attached to the tube. 
This worked, as it often does, by spraying,  under high pressure, a fair amount of Segev's stomach contents into mouth and onto my face. I'm used to that, but since I had just given him his three anti-epileptic drugs, some of that was also ejected.  I know that it was medicine because it is quite a bit more bitter than the taste of Segev's stomach juices; I try to pay attention to these kinds of details.

During the explosion Segev's breathing remains troubling and I must also reassemble the padding under his neck collar in order to properly raise his chin so that he can breathe clearly.

The initial burst of air and meds though were just a teaser and since, still a little groggy from the usual lack of sleep at night, I hadn't twisted the feeding tube far enough into the button and the second wave of hydraulic pressurized stomach chyme pushed the tube free and sprayed the entire surrounding guaze pad, of which I had just placed a clean one, with requisite healing ointment for the gastrostomy hole. Fortunately this time none of the food had escaped around the g-tube which would have meant a major clean up since stomach acid and food all around an open wound is not pleasant (so I've been told).

While all this is happening, the inhalation machine still chugging away, the mask around Segev's neck, he starts to cough. So I must continue to hold the syringe and tube in one hand since I could not yet close the tube and there is medication inside of the open-ended syringe, while reaching for the slithering suction tube which, like a real snake, always finds itself in the most unusual of places, wrapped firmly around something, then freeing and activating it before the accumulated pressure of the phlegm in Segev's throat causes him to vomit. 
This is always a major concern when Segev coughs but especially so when yesterday he was once again ill, non-communicative and on oxygen for the better part of the day.

After the clean up everything returns to normal of course. After all, heating up one's coffee is as simple as pushing a button on the microwave. And after having had a few sips of coffee, after Segev had been loudly moaning and head rolling previously in bed, a sign he wants to get out, he sits in his wheelchair and slips into a little morning nap. He probably thinks to himself, "with my father always hovering over me at night, suctioning, treating, repositioning, changing my diaper, inhalation, who can sleep?"

September 04, 2011

A "God moment" and Arghh!

The episode last night I had with Segev may or may not get written but right now after 48 hours with him and a full days driving and treating patients I'm simply too tired. This does not take away anything from the value of these two blog entries from other bloggers which I would like you very much to have a look at:


  and Tatyanna

September 02, 2011

Oh goodness

"The question is, if all that effort is really worth it."

Who do you think said that sentence to me just the other day? I'll let you ponder. It has been on my mind lately and then someone said  it. Only the way that I've been thinking about it has absolutely nothing to do with the context it was actually said in.

It is not that I feel regret at giving it my all, but I do regret not being a lot less naive, not learning quicker. Without the right tools any endeavor can lead to an enormous waste of time and effort, not to say terrible mistakes. In that context I feel that throughout Segev's life like I have been chasing an apparition. Something which others are adamant does not exist: the Solutions to Segev's many complications. And by solution I mean that technique, diagnostic method or substance, which will make his life better. I am so confident in human ingenuity that I am not expecting ready made answers   as I have contacted dozens of people through the years, especially non-professionals,  in this quest to help Segev. The ingenuity works and comes into play when we attempt to understand an issue, often allowing a modus operandi to establish itself.

There may be great difficulties to overcome but the guiding light must be the willingness  to participate and when necessary, create something new.

Then again there are instances when I must bring all of my ability to focus on the prize to bear because I run into these:

Do you all remember the pediatric hematologist in the children's hospital who said about the ketogenic diet, "You know I don't deal in alternative medicine?"

The gastroenterologist who wanted to send Segev home with Losec when he was seizing every four minutes?

Do you know about the highly regarded pediatric neurologist, a specialist in epilepsy who had said I was confused, unknowledgeable, but after studying the data shook my hand and said I was right? Yet who later told me, "why would I want to study your son, when there are none others who have survived to his age?"

The pediatric pulmonary physician who "wouldn't take the responsibility" of prescribing inhaled antibiotics for Segev's bronchiectesis despite that the most highly regarded doctor had already done so in the past. Despite that Segev required constant physiotherapy and oxygen, was sick with pneumonnia on a regular basis he said,  "Let's see how we get through the summer and then come back to me."

The chief pediatric neurologist who said that there is no such thing as esophageal colic and when I told him which standard medical textbook he could find it in said, "we don't use that book."

The professor, head of the pediatric department, Segev's coordinating physician at the time who, when I called him on his cellphone for help because Segev was barely breathing, coughing blood, said, "you know Fischer you have some nerve calling my private line, this is for emergencies only!"  The same doctor that on a previous occassion refused to prescribe antibiotics despite lab evidence of infection because the generic doctor at the imaging institute concluded that the CT scan did not show clinical signs of bronchiectasis even though two of the countries' top pediatric pulmonologists  saw the CT and concluded that those very signs cited proved that Segev suffers from bronchiectasis. (The doctor is still chief of pediatrics in a major hospital)

The doctor who said, "Segev can't possibly live more than a year."

The professor of pediatrics who said, "put your son in an institute because as his situation worsens you will have to see him suffer and you won't be able to care for him."

The chief (non-pediatric) neurologist who incorrectly diagnosed Segev with hypsarrythmia and through the pediatrician assured me that every hour I waited to start the "treatment" I was bringing  my son closer to death.

Of course there are many more and each case was yet another doctor pissing in the well. It adds up, if you know what I mean, all this wasted effort, the needless anxiety, the complete lack of interest, the lack of knowledge or willingness  to learn, to study.

Recently on a Facebook Ohtahara page a woman asked how other parents react when, in a casual conversation you are asked about your children. The how and if of investing in your response anything concerning your special needs child, severely ill, physically and mentally compromised child, your prickly difference.
I responded with,
      I guess I'm a bit of an egotist because any questions I get about my children always ends up being a brief history of Segev's condition, his uniqueness and the issue of my beliefs on providing love and attention to children who are in mortal danger, struggling to have a place in society. I just feel there is a need to be vocal and to educate, for that very reason I used to take Segev with me shopping: so that he could experience fresh sounds and energies and so that others would see that this amazing human being was a part of our existence as well.

But unfortunately there is certainly no educating physicians about the importance of finding the proper standing for a child such as Segev. Then again this isn't meant to be a rail against doctors specifically. The examples are meant to highlight  the feeling inside of me that has been gaining  momentum since we left hospital last time; that the finite energy I have, or more correctly the diminished capacity, leaves me contemplating what are the right places to invest that energy.

The living environment continues to present as problems of  inconvenience, high maintenance and poor air quality  although the recent addition of eight hours a week of in home help assigned to me through various agencies and represented by a woman who appears to be quite capable (despite no prior experience with children) has certainly come at the eleventh hour and is definitely felt as a partial reprieve.

Even when you have wind in your sails, like I do, those situations still bring you down, adding complexity to an already complex life and certainly increasing the energy you need to expend.  And then comes the quote that opens this post. Coming from his mother. I've literally been called, "crazy", "obsessive", "excessive" in context of caring for my son. So be it.
I'm certain many have felt the blow of not receiving support from the very people who you would expect that support. And yet you find support in unlikely places. Support that some will chastise you for as being "virtual". Someone once said, "I'm a bad blog-friend" and I responded, "better bad blog-friend, than no friend at all."