October 31, 2010

If I cry myself to sleep tonight

There may be princes amongst men,
accoladed and revered,
But we live amongst kings and angels
who tread softly our hearts
and whisper
'I am a prayer'.

October 30, 2010

The night of the day looms

There is a single tear resting at the corner of Segev's left eye. I'm not sure why it's there but I gently wipe it away as though whatever caused that tear will also be removed.

Let's back up a little, just a few hours.

Segev's lips are purple. His tongue is purple. His face is blue/purple, his feet are purple. The prongs of the tube are in his nose and the oxygen is flowing at six liters. First though I placed the suction tube in his mouth, towards the side as his clenched teeth would do a pitbull proud. His entire body is locked in a staccato dance of absolute effort. He is not breathing. I dig my nail deep into the bottom of his foot though such a massive seizure won't respond to it and I call his name though he can't hear me.
The seizure breaks before I start to feel the tingling pressure in my chest build to worrying proportions, the pulling on my neck is only ever so faint.

He starts to sputter, with his lips separated but still with his teeth clenched. I gently pull at his jaw and he opens. The suctioning is easier this way and he continues to sputter phlegm.

Segev's eyes move and that tells me he is coming back towards consciousness instead of falling off exhausted. "You had a great big seizure Buddhi" I tell him, thinking perhaps he understands. The oxygen stays for another minute. He is quiet but awake.

Again we need to go back a little, to the evening, finally he was asleep and I was able to give him his last ketogenic meal without interruption. Then he woke at 10.30, which is unheard of after a day of complaining from vast quantities of air in both his stomach and intestines that I worked consistently to remove. I put him to bed at 2.30 in the morning still wide awake, I had enough and he was asleep in a few minutes, without my lullaby, after one last complaint that necessitated manipulation of his bowels by pressing.

After the seizure at 7.30 I considered a few more minutes of sleep, he seemed alright, but I needed to get started with his meds, inhalation and food in 30 minutes anyway, five hours of interrupted sleep has to be enough.

Right then he began moaning and his arms raised themselves stiff into the superman position, above his head as he lay, moving in small circles in the air. His legs jutted stiff and straight.

The last time I saw this constellation of movement and sound was in 2005, beginning sometime before his bowel obstruction. There is no need to panic, I thought, just to worry. I worked on his abdomen again, trying to move things along, feeling pockets of hardness (no, never constipation) and bubbles as well as scar tissue. Hard long scars both on his abdomen and inside, where his bowels had burst, were cut and sewn back together, minus a few pieces.

I went to get the bowel movement "equipment"; a flexible thermometer to insert into the anus for stimulation of the sphincter muscle, wetwipes and a diaper, those horribly dysfunctional diapers. Everything together helped, for now. 

I wrote a prescription of herbal medicine for Segev which he received on and off for nearly two years, to counteract inflammation in his intestines and stave off further adhesions. It worked. Now we will have to return to that I suppose.

Segev's temperature is beginning to rise but the copious amounts of secretions he spits up is thin and pale, a good sign.

October 24, 2010

Fakir ll

Update: as of this writing Segev is out of danger and feeling quite better. 24-10-10

Fakir 1 is here

In magic timing is everything isn't it?

Many parents of severely disabled children (again, I prefer long winded never-to-be-adopted descriptions such as "extreme multi complex children with disabilities and chronic illness") speak of how great a difference there is in their lives before and after their son/daughter came along. Which is of course stating the obvious but then the sentence usually continues towards how much they have changed, in their perception but also behaviour over time. Self knowledge is a necessity when dealing with the grinding reality of being the primary caregiver for a very very sick and disabled child. Grinding can do two things, I believe, it can either break something into pieces or it can polish it, sharpen it even. A broken piece can be quite sharp as well, hence "I am a broken man". For more on the title of my blog look here in the comment section.

What comes out of this process of breaking/sharpening is that as a person you become exposed, in all aspects, demons and angels, it brings out both the best and the worst in you, each element struggling for dominance.

I cannot say that I am a different person from before Segev came into my life. I can see that my experiences with him have only further honed fundamental beliefs about caring for others, though my skill-set, from the natural wear and tear that such a life brings, has diminished somewhat, become dulled in certain areas. I have been able to hone my cursing skills very nicely, though I am hesitant to demonstrate them to you here.

Driving my daughter to school I noticed once again how people were walking towards work, or the two Hassidic guys, walking much faster than anyone else, as always, in animated conversation, as always. Lots and lots of life force there, I thought to myself, lots of forward motion.

When you are sick you are placed into stand-by position, you are pulled over into the pit stop of your formula one lifestyle.When ill things slow down and seem to take an eternity, you contemplate differences from your pre-sick state and how you usually are, that is if you are healthy enough, being sick, to have the luxury of contemplation. 

Being the father of Segev necessarily raises in me the need for contemplating his condition, as in, the human condition when someone is so completely defenseless as Segev, but not for a limited time, for his entire life.  As said parent I get pulled into a sort of sick-state-of-mind along with my son, on two levels. One is the constant treatment, consideration and work that goes with keeping him alive. My world has been recreated, an almost virtual world if you will, by his being absolutely disabled and chronically ill. This new world of mine I refer to as a hermetic circle because I must carry the burden alone. Even my other two children who occasionally are required to assist me cannot disturb this process of hermitization, it is a necessary evil.  On another level the constant care of Segev wears on me physically.

Reflexes have slowed but some days are better than others. You might think, well that is a natural outcome of aging. I have to remind you of an expression, dear to my heart, that everyone knows about, even if they don't truly know it; "it's not the years, it's the mileage".  Some companies have a clause when you are sent to work abroad in difficult situations that is referred to as "tropical years". They acknowledge that someone coming from, for example, northern Europe, and then goes to work in Indonesia, is going to have both physically and mentally a tougher time than if they stayed in their native country where they are adapted to the climate and way of life. Tropical years count for double and so such a person can retire early on full pension.

Do other parents dream of retirement? Because it does not appeal to me in the least. I am most happy when busy, especially in my profession which allows for me to help others, believing, as written here it's what I am meant to do. The continuity therefore, of before and with Segev has not been disturbed.  What has kept me going unfaltering in my resolve  is what I want to share here.

After his birth I had an overwhelming intimation that something was wrong with Segev's brain. So much so in fact that at one point I was nearly overcome with the paradoxical feeling that Segev was fine and I shouldn't do anything at all, not even take him to the hospital. That is how strangely yet powerfully intuition can operate.

The doctors said, "he is a late bloomer". The ultrasound was read as "probably normal", the CT scan was "probably just a naturally occurring variation", in the first MRI there was no mention of migration defect, hypoplasia or any problem with the cerebellum. So according to high level medical science Segev was actually 100% normal.
Flash forward to the second MRI report almost a year later which recorded a lack of two of the three cerebellar arteries as possible explanation for Segev missing two thirds of his cerebellum. So I thought up  the idea of doing a Doppler perfusion scan of those arteries and it showed that he has all three with full blood flow.

Clearly one factor influencing my resolve is intuition; I listen to it. The other being educated thinking. This may seem something of a non-event to some, who feel very connected to their intuition, but I like to see myself as a thinker; give me enough time and I will find a solution, which kind of contradicts intuition.
So despite a tremendous curiosity and desire for learning, like my father and grandfather before me, in the end I can say that for the most part my intuition has allowed not only Segev, but other patients as well, to prevail.

One of the adversaries, I believe, for parents rearing children is giving children too many choices. It may weaken their resolve and cause confusion. So to simplify choices I don't ask questions. This may seem to contradict the above statement of voracious curiosity. What helps here is if you consider that it's all about which questions I don't ask. In a completely natural fashion, as an outcome of who I am I simply cannot ask "why did this happen to me?"  Or, "why did this happen to Segev?" 

I honestly don't think there is any relevance to this question, whatsoever. So many seem to make this a central issue in their lives as parents of severely disabled children and suffer tremendous anguish because of it. 

It doesn't bother me that Segev is the way he is no more than I could be bothered by a tree being a tree. Is taking care of Segev crushing the very life out of me? Sometimes I certainly feel that way, but I am just being true to my nature in taking care of him and being true to my belief that as a father I carry a responsibility.

Don't take this to mean that I don't find myself in metaphysical discussion, I have religion, I do. It is my faith in life that helps me carry onward. I trust that life does what it needs to do. I know that in the journey of trying to help, to come to this understanding, that we are most exalted; when we create something together, selflessly. This is a pool of strength that strives to create and even as individuals our intentions bring us together energetically. As a contrast stands everything what we do not want to be, negativity, so that we can understand who we are. And this journey of creating a kind of living for a child naturally attracts a great deal of negativity. Still it exists as a mirror to look into; I have a saying, "good without bad is blindness". Without the bad we can't see the good, can we?

I was with Segev in the mall one day and a girl of about nine came towards us and stood close to Segev. She looked at him for a moment and then at me and very calmly stated, "He doesn't know how to speak."  Filled with pride for this little girl I replied, "no he doesn't". "He can't walk either can he?"  I answered her and searched her face for something I could recognize, some special emotion. She was about to say something else but then her mother sprang in and grabbed the girl by her wrist, pulling her away muttering.
What an intelligence in that little girl! Possibly the most intelligent response to Segev I have ever witnessed. When her mother came along I thought, "such ignorance", here was finally someone who could see without preconceptions, straight to the heart of the matter. The girl disappeared in the crowd and I could not help but feel a sense of loss. It was one of the last times I was able to take Segev out to a public place.

I have seen many moments of truly special connection in life, when something happens that defies our understanding. Some are opposed to calling it magic simply because, since it is not usually reproducible it is "blind luck", "an incredible coincidence" or your mind playing tricks on you or proof of God's work. Certainly not something which was controlled by one person in order to achieve an affect, recognizable beforehand.

Most of the time this is true. It is also true that a broken clock will give you the correct time twice a day, you just need to know when. But that is a rather poor example since the trick is not to point to the sky exactly as some unidentified object passes overhead and shout "UFO" but rather to know that something will happen at that moment, even if you don't know what.

We all have had the experience where you are standing in traffic, offset and behind someone else, looking at the back of their head and that person turning around to look directly at you, not looking around to see who of all the people around might be staring at them, no, they look directly at you. This is an easily reproducible effect.

We have senses that need to be used to their fullest and I believe nowhere more so than when trying to help our children. But intuition can be a slippery slope and from twenty years of treating patients I know you need many faculties working together to come out with a useful application of intent.

At the beginning of my career as a specialist in Shiatsu therapy I saw a slew of cases that hadn't found relief despite having gone through any number of treatments. Often it was because the person themselves needed to see their problem in a different light, not just that the proper techniques of physical manipulation had not been applied. The following case illustrates that quite well.

I treated a couple for some time whom had a daughter of fourteen that had been lying in bed paralyzed for over a year. One day the mother asked if I would see their daughter and I readily agreed. Specialists had been unable to find anything wrong with her. Her room was dark and I literally felt a sense of foreboding as I entered. Sitting next to her on the bed I explained to her what it was I was going to do, which amounted to palpation of her abdomen. Her voice was less than a wisp and I could barely make out if she was saying something at all. I was so afraid that anything I might do would cause her harm that I had to ask myself 'what is it really that you think is going on here?'

Fifteen minutes passed and I explained to her how this pressing on her abdomen could increase circulation and decrease tension. Finally I mentioned that if she were able to mimic this pressing a few times a day herself she might be able to feel a bit better.

I waited for her to respond but there was only silence. Five minutes went by so that I thought she had fallen asleep. Finally she did speak and said, "you really think that I can help myself ?" "Yes, I do" I answered. Now I absolutely believed two things; one was that I had no idea why she was in such a state, mentally or physically but that her abdomen definitely did not show any pathology that my training would let me see. Two; there was no harm in trying to encourage the girl to become more active while laying there in bed. In doing this I was not prescribing a treatment for whatever it was she had.

The parents broke all contact with me after that visit. Much later I would find out that the next morning the girl had gotten up out of her bed and wandered over to a school friend (in the middle of Canadian winter) who she hadn't seen for many months, dressed in her pajamas. She returned home that evening, walking, to find several police cars outside of the house.

This is a case where timing produced magic. The right thing at the right moment. Unfortunately, just as the case of the paralyzed girl was unexpected, the outcome even more so, Segev's care will remain a mystery as he concocts strange new challenges, secretly, challenging me in an absolute way. Perhaps that's why I call it magic though, because to me in magic there is always a moment of uncertainty, of doubt whether the momentum will swing towards pulling it off or whether luck will not have it. Luck is certainly something I could use a bit of.

October 22, 2010

Not alone II

What does it mean to be alone?  Segev sits in a medically induced haze for part of the day, not purposefully, but because he has to have such a large number of medications to control his seizures. Sometimes it looks like he is asleep but a light touch immediately brings him out with a smile.  So I prefer to see it as a trance state and I am dying to know what goes on in his thoughts when he is like that. Then there are times when he is truly alone, non-responsive to any stimuli. I don't refer to the catatonic state after a massive seizure but the times or even whole days when he simply cannot find his way back to consciousness. I wish I could be there with him, to guide him as I guide him through his ill-life. But he is a stubborn tourist this Angel named Segev. He has his purpose. His purpose though is at odds with the physical form he is trapped in. His physical form simply cannot contain in a normal way the message that he brings me, and that is part of the message to me.

I have an ex, my second, my second ex-partner, partnerX from here on in, who is surrounded each and every day by dozens and dozens of people that she interacts with. Each day dozens of people whom she meets even for the first time in her business life, consulting, designing, as well as her personal life. A constant stream of people vying for her attention, that beautiful creature, and yet she feels horribly alone, left out of the life she really wants. Terribly successful, accoladed and desired yet terribly lonely.

I am surrounded by my son Shoval, daughter Noa and of course Segev. My only real other interaction with people is through my patients, loyal and to some extent, friends or even extended family but always far away, really only in my professional life, though I absolutely take my work very personally. Yet I do not feel alone. What I do feel is un-nurtured. That is the best way I can describe it. Sometimes you feel that it would be nice if someone could just take care of you a bit. 

I can berate my children for not doing more, sometimes I certainly do. On the other hand I know that they are in a special situation, called upon many times to step in for me for a few moments, caring for Segev so I can make his food or shower. They don't need to be told when and how to do suction, give him his food, take air out of his stomach, hold him, press on his stomach, warm his legs in the winter. As a matter of fact my daughter has such astounding ability to feel physically when something is not right that she can rearrange Segev's posture to make him more comfortable or press on areas that relieves his pain without being asked or shown. Having that intuitive ability is the basis of the bodywork therapy I have been performing for over 20 years and so I am naturally very proud of her.

She also sees her father suffering, aches and pains, headaches and severe fatigue but I don't know if she sees me as being alone or lonely. I'd like to be able to share some of the responsibility with someone, tried to but it didn't work out. The massive success of partnerX, which naturally brings even more responsibilities was a compromise tried for a long time but eventually abandoned. 

Where Segev is concerned compromise is not a good thing. When you go to the emergency room and the staff does not recognize the severity of the situation, trying to force you to conform to standard protocol and thus compromise your intention of securing safety for your child, I will not have it. 
Nurses of one hospital learned the hard way after many visits that I will not compromise, that there will be no mistakes and that now means now. This means not sleeping, knowing what the heck your talking about and double checking everything that is done. After you catch someone giving the wrong medication, the wrong dosage or forgetting a dosage, attitudes will change. Perhaps my demeanor is even what exacerbates some of the lapses, bringing out doubts in people; so be it.

When you are as demanding as I am, of yourself included, there is more fatigue and there is more animosity but there is a heck of a lot less uncertainty and this has proven itself again and again.
As of today, of children born with multiple brain deficits, massive neurological malfunction, complete paraplegia and most significantly that most virulent of epilepsies, Ohtahara, that remains very poorly controlled, Segev is as far as I know only the second child to reach his teens. There probably are more somewhere but if there are then his or her parents are not part of a support group, facebook group, online forum or blog that I know of. 

And so I write, in part to share, in part to gain more understanding and partly to connect to others who share similar experiences and in having done so and connected to people I find that I did feel lonely. Not on a personal level but in the sense that now I know I need not fear being unique. It's lonely at the top, they say. Something that partnerX can relate to. 

I still don't look to the future, thinking, tomorrow will be better. I still don't believe in hope. Don't get me started on hope. I go by what I have learned, which is that yesterday at some point became today and that today will become tomorrow. Until it stops, in which case all the days will blend into one.

Segev is already there, I believe. He has no sense of time, his days are all one and he floats in his loneliness and his togetherness as though they were one and the same thought.

October 21, 2010

The morning of the night

Segev enjoys his bath, which is actually a shower in a rifton chair that nowhere near approaches what he needs. But he is calm as I splash water on him and massage his body with the liquid non-soap. The bath tub does not accommodate the chair's stand so you have to bend over the entire time but if you pull in your stomach ever so slightly your back won't get stuck. His arms flop by his sides, sliding between the rim of the chair and the tub wall which is awkward because Segev will, despite being calm, almost hypnotized, suddenly flail and jerk his arms as part of a small seizure. His hand will pop free and my reflexes are good enough to catch his arm as it rockets toward the metal faucet in search of injury. 
There is also the screaming. For no apparent reason at all. This morning I gave him a bath at 7.30 after a usual night of jumping out of bed in a split second to suction him (less than ten times!), turn him over, physiotherapy to unblock one of his bronchial tubes, at 4.30 inhalation with hypertonic solution and to change his diaper and clean the bed because the XS adult diapers are woefully inadequate.

The screaming started just prior to taking him out, again I say, without any apparent reason. His expression was a mixture of 80% pain and 20% fear and I started to feel angry because, I don't want him to suffer, especially after an incident free calming shower and also very much because I couldn't understand why

Like that rolly polly speech by Lambert Wilson as the Merovingian, as long as I know why I can start to do something about it, I have that ability, to press or touch certain points on his body which can help with pain. But without why I am just like anyone else, looking on at Segev from the outside. Not a healer, a therapist or a doctor to Segev, just a spectator who can only shrug his shoulders. Only that it feels like my intestines are being melted inside of me. This time I was able to stop my feelings from getting that far, using meditation, all the while still holding Segev in my arms, on the edge of the bathtub, drying him and trying to sense what is wrong, saying out loud, like the buffoon I often am, "Segev what's wrong?" 

He can't answer of course, not because he doesn't understand the concept of "what is wrong?", we believe that he does understand it, but because he was busy suffering his pain and then the whole world gets shut out. And then, in order to come full circle, I do what I always do out of desperation, like the times when Segev undergoes blood tests and as soon as the physician takes Segev's wrist and bends it to expose the ultra fragile veins, begins screaming and it takes three adults to hold him down and so I did, what I did then, what caused the staff at the health clinic to mumble in awe that he responded: I whispered to Segev in his ear, so quietly that I was barely certain something was vocalized. He listened, but unlike the amazing result when taking his blood he still moaned loudly for a little longer and then his expression changed, to one of attentive listening and he became quiet.

Then came the hard part.

I am alone in the house which means I have to clear out ahead of time the obstacle course set throughout the house from yesterday's 'regular living', before I try to bring Segev from the bath to the livingroom couch where the "dressing" stage takes place. But only so much can be prepared ahead of time since as I clear things out of the way, bring clothes to the couch, gauze pad, vaseline, his neck support cushions from the bedroom, the inhalation machine from the bedroom, I am leaving Segev alone in his bed. So by the time I get back to the room ((less than 30 seconds) he is seizing in a small way, but a way that stops his breathing. On top of that the seizure puts him on his back so that he can get the full-on "hey look at me, I'm choking on my phlegm" experience. Each time I have to carry some equipment back and forth, more so in the mornings, he is seizing and choking, despite the anti-phlegm treatment at night. Now you can see how we can get to up to 150 seizures a day.

I am sitting on the edge of the bathtub with Segev wrapped in an enormous towel and he is smiling and locking his jaw open and the air is rasping staccato in and out of his lungs. I need to transfer him to the living room and the question I ask myself is, since I have an inflamed tendon in my shoulder, do I take the suction machine with me in one hand, tucked under Segev's legs and then carry him and it together to the livingroom, or do I make it easier on myself and a bit safer for Segev, leaving the machine but then have the consistent situation arise that after I put him down on the couch and arrange cushions so that he won't fall off, I have to dash madly for the machine as he invariably coughs (read=chokes) and risk further ill health.

I decide to take the strain on my hurting shoulder and bring Segev to the couch. Along the way the suction tube falls onto the ground so that msut be replaced. I quickly have to put his diaper on, vaseline around the g-tube, pad, shirt, (while he flails in seizure. For those that do not know, it isn't Segev trying to help nor trying to resist, merely one of about 150 seizures he has in a day) trousers, suction. I transfer him to his chair and would normally start inhalation therapy again but his breathing is reasonable since his 4.30 session and he is bringing up phlegm every few minutes, so I can put it off a bit. I prepare his morning ketogenic meal and prepare his medication, ground up between two large spoons. I put the medicine in the large feeding syringe and give him, noticing that the coconut cream from making his meal has left a residue inside the tube. Segev comes with me to the livingroom from the kitchen and I transfer his meal and feeding equipment to the desk. I go back to the kitchen for my coffee and on the way pass the dining room table. There I see his  large spoon with Segev's medicine on it. Wut? Dementia is settling in my brain, I kid you not.  

When I went to the kitchen to get the syringe and fill it with water, some of the coconut cream left from his meal coloured the water white, the colour of his meds and my brain then took a shortcut, thinking I'd already put the meds into the syringe. Pretty nifty, no? I give him his medication after taking the excess air out of his stomach.

Segev is quiet and says good morning to Pluto and Pluto barks ( in my best barking voice) good morning to Segev. I begin giving him his meal and take a sip of my coffee. Or is it the other way around?

Elapsed time: One hour since getting up.

October 15, 2010

Esoteric and convoluted, just one of those days. Or, Will the real Doctor Parnassus please stand up?

Segev appears to have pulled out of his bronchiectasis exacerbation.  As has been the case before, an intensive regimen of physiotherapy, inhalation therapy as well as several supplements are allowing Segev to go long periods without antibiotics. Since his lungs are colonized with Klebsiella, Pseudomonas and candida, antibiotics are a last resort; the less antibiotics the less chance of resistance building up. As a matter of fact I have to look back a few years in the blog to find the entry where I had to give Segev injections three times daily, which truly was a hellish experience. Hospitalization in his condition is extremely risky and I have already written about that as well. So he is home with me and looking fair.
Segev's medicine bag: the medications and supplements he gets every day, up to three times a day
I quite liked that film, "the Imaginarium of Doctor Parnassus", where people strangely enter into a special world entirely created for them, in a place where the laws of physics would have a difficult time surviving. 
As it is it seems some days I question if I'm not just deceiving myself, believing in a world I have created, creating only the illusion of health, rotating in and out an endless stream of remedies and medications but doing it so well that you can never quite be certain which part is real and which illusion. 
In the film people enter Dr. Parnassus's world and find what they actually need. In that sense he was a gifted healer.  But the trick is of course to know what to heal.  When Bennie Waddell writes in his blog I get the feeling that the healing is going on within himself and Timothy Ringgold may just one day be able to patent his method of taking the ultimate pain and transforming it into one thing we all want so dearly: to nullify the uncertainty that nibbles at our lives as parents of severely disabled and ill children. 

He writes about transformation and about taking the pain of loss and being able to "turn down the dial" so that he can turn up the dial of the beauty of his love for his child.  
The pain is there for me when seeing my son ill, uncomfortable, suffering, in pain, screaming. My pain is so strong because I love him so much and somewhere in there lies the beauty of it. I can't seem to separate the two the way that Timothy does: but then he speaks from that sense of finality where his Anabella no longer feels pain. And while he and his wife may grieve I hope he is never made aware of the fact that people say, "you'll get over it". You can't and shouldn't get over it. You can learn to live with it but it is the value of the thing itself, all the love that you have put into that shared life. Somehow I don't think this will be a problem for Timothy, as he strikes me as a very strong person, a completely genuine one.

Dr. Parnassus is certainly an apparition of faith to me, showing us that it is our trust in discovery, transformation and the unexpected that allows us to connect to our true needs and thus form an understanding of our lives that really works. An understanding though that functions like the lifting of the veil, of maya, something I glimpse as I rely on my intuition.

While Segev's veil has at times been quite transparent , not so lately. Just the opposite, I feel that he is undergoing deep changes which are not understood at all. Signs of this can be seen in his sight becoming functional to some minute degree after twelve years, changes in his expression. But also in the worsening of his sick little body.

Thus, serious feelings of unease accompany me these days. Some reasons are obvious though connected indirectly to Segev; financial problems are mounting. My oldest son received his conscription papers last week. My own minor health problems persist; as the conjurer cannot be tricked, the cobbler goes barefoot.

You won't find me looking for assistance here, in Segev's drawer, full of emergency meds, narcotics strong enough to end any suffering. Nor in a bottle. Not in something you can smoke or taste. I won't look for a solution in another person, having tried that more than once. Obviously the solutions need to be appropriate to the problem. 

Most importantly I believe that the difficulties that have passed may not necessarily prepare me for those ahead and so it must be my understanding finally, that allows for what I think can and should be done, not necessarily being what I will actually be able to do. 
"Physician heal thyself" means, if you can't help yourself, how can you help others. But my twenty years as a therapist has taught me that everyone needs outside assistance on occasion and so "physician heal thyself" rings a bit hollow in my ears. I'm glad that through the two fathers I have mentioned here, perhaps members of some league of extraordinary men, I can continue to seek new avenues of understanding.

October 13, 2010

Perspective from Timothy

I read the comments until I became uncertain anymore where one person's ended and another began both from the endless stream of words and the stream of tears that obscured my vision. Then I wrote (somehow got deleted): 
I have had many opportunities to cry, trying to keep my son Segev alive for more than twelve years, but never did. Until I read your words. There you so eloquently show your fortitude and your shining love for your daughter, you show human behaviour at its most dignified.
I didn't just cry, sobs racked my body for the first time in 35 years.

Each of us carries a burden. Putting that burden into perspective is not easy. Some of us write about it, to make sense of it. And yet that horrific joke, told about doctor's, never even entering into the macabre repertoire of humor parents of extremely ill children often share, seems to find a completely sound and true resonance because of his outlook on life; "the patient died but the operation was a success", could not better describe it.  

Timothy Ringgold writes about his family's journey to heal his daughter Annabella. But she passed away two days ago after 101 days in PICU. I do not know if I envy Annabella's parents for all the life that was cut short which both spared more suffering and yet ended any further experiences of love, but I certainly hope that his demeanor will somehow rub off on me, even so grizzled a veteran.

How he wrangles success out of his voyage is simply stunning and I invite anyone to read and be inspired: (written a few hours after her passing)  day-101-part-two , (written the next day) new-day .

October 09, 2010

God will never give you more than you can handle

Disclaimer: no intention to be snide or belittling to anyone's particular religious beliefs is intended here. I absolutely prescribe to the notion that anyone's religious beliefs are a vital and autonomous part of our rights as individuals to express ourselves.

God will never give you more than you can handle.

Stop saying that.

This time , I must respond, somewhat out of character, to the many, many times I have seen people write the phrase above,  without the usual burrowing attempt at understanding the depth of issues I wish to address.

Even people who have gone through hardship, are dealing with a disabled child,  caring for a terminally ill family member, will come out with that brazen statement full of intent to impart hope and serenity to our outlook on life, if not our lives themselves.
Please stop.

However you want to call the dynamic forces at work, be it God or Buddha, Allah or The Great Spirit, for every one example you can give of that wonderfully thriving family with their diverse children (read: disabled), or that young person, faced with death by illness who found wisdom and courage, I will give you examples of people who failed. Failed to come to terms with, committed suicide, broke down and became shells of their former selves, lived in agony and denial until their deaths, confused and distraught or without the intuition to introspectively find their inner guide to sanctified bliss.

Life is hard. Harder for some. Unbearably hard for even fewer. And it could be worse. Life goes on. We move along, even partly disabled ourselves as caregivers, the cost is tremendous. Valiant statements to the contrary, "I wouldn't change a thing!", we get hurt and it damages us, these experiences, and the damage is permanent. But don't confuse the continued momentum of our lives with the concept that we move forward because "God only gave us as much as we can handle". We were given MORE than we can handle, it's just that even when you get broken, some people get up anyway, they don't stay down. Is that your "never more than you can handle"?

I believe failure IS an option, "never more than you can handle" somehow perpetuates the idea that you can never fail. Really, O righteous people? Really?  So I never need to ask for help since I am given only as much as I can handle?

I don't need to think in terms of,  "this is God's plan". I am not interested in His plan. Don't read anger, resentment or disappointment into that statement. Probably I could not understand it if I tried. He made His decision so I will just let that be and get busy dealing with my decisions (all part of his plan).

"God will never give you more than you can handle" is revisionistic history; looking back, after having weathered the storm, you say, "well I made it! I guess everything is OK now." What poppycock. Why does everything have to be OK? Why can't it be terrible? Is there no terrible in the world that is worth having? Or in other words does terrible hold no value?

God will never give you more than you can handle sounds like "pillow Angels" to me; a euphemism with all the right motivation but that somehow sticks in my throat. My life challenges me and thus I am motivated to go up against that challenge. If I thought for one moment that Segev's struggle to live was defined by the fact that he and I will never face any situation that would overwhelm us then I would feel comfortable knowing that life was somehow contained.

But it isn't. It bursts out at the seems and this philosophical concept of containment stated in the title is a false sense of security that is dangerous. I say dangerous because it is exactly when we push ourselves, in action as well as understanding, that we reach that place where we never were before. A new place. A place that allows us a better perspective, even if we have arrived at this new place by falling there.

You can push until you break, it's true. It has happened to me on a number of occasions. Human relations have suffered as a result. I have made mistakes with Segev. They were my mistakes though, which I take much more kindly to than when I have trusted the decisions of others and seen them make a mistake. The value of their mistake is lost on them since they are not the father of the child who suffers as a result of that mistake.
So perhaps I am some kind of control freak, not wanting to relinquish the reigns to others or even, in my mind, to a higher power. To a religious thinker this is an impossibility, not to relinquish to a higher power, since that higher power is in control, at all times. But I won't let others take responsibility for mistakes concerning my son, he is my responsibility after all. This does not come from feelings of guilt. This is a true sense of responsibility, jokingly I refer to this as my God-complex, others I'm certain won't be so jovial.
So please, do not say that God only gives you as much as you can handle, because there are situations that people go through of which you have no idea whatsoever. Allow people the dignity to fail, since it is there that we truly know ourselves, not, as in our triumphs, through a glass darkly.

October 05, 2010

Segev does not live in neverland

Segev has not had food in his mouth for over six years now. When I eat something I enjoy I think of Segev. I don't feel guilty, but I do feel the lack of enjoyment that he suffers. With all that he goes through, wouldn't it be nice to have him savor a piece of quality chocolate? Letting that wonderful drug-like brain-body connection work its magic for a few moments as compensation for all that struggle and unpleasantness?

He used to make a weak sucking movement with his mouth when he was hungry but that stopped a few years ago. I put freshly grated lemon peel under his nose and tell him, "this is a lemon Segev". After he vomits I will pour a small spoon of water with a few drops of lemon juice into his mouth. This helps rinse away a little of the taste and also makes him choke momentarily so that he coughs up some of the vomitus that automatically goes into his bronchi.

After I finish giving him his meal through the G-tube he does not have a satisfied demeanor. But after a while he will start complaining, no matter how slowly he received his meal, 200 cc's over a two hour period, because of the air in his stomach. His staccato breathing causes him to gulp air and the G-tube itself allows the passage of fluid and air since the hole has gotten bigger with age but his G-tube is already the largest available.  Often I can pull between 60 cc and 180 cc's of air out of his stomach, several times a day, which would otherwise automatically lead to vomiting.

Most of the time Segev is not fully conscious and so will not react to being touched, stroked or massaged. It used to be that if you touched the bottom of his foot he would automatically enter into a seizure. Now there is almost no reaction of any kind. I could go on and on about Segev in his "dormant" state, which takes up most of the day these days (or years). The medications are a part of that I suppose, and I say suppose since it is very very difficult to see any changes in levels of consciousness with changes to his meds. Also when he was younger the drugs seemed very clearly to make him drowsy for a little while, after which he would become very lively. Making moaning and siren noises, flailing arms occasionally, his head cocking off to one side. 

Very rare now. You have to work to bring him out of his stupor. But there you find the magic, when he is aware of you his eyes light up and he smiles and I feel like a shot of adrenalin has been given to me. Then I hold him and he smiles more, even rasping out a giggle sometimes and makes a special kind of soft moan, something akin to a sigh. I am so thankful for those moments. So thankful that, while he doesn't track movement, only in the last few months has he started to turn his eyes in the direction of people when asked for example, "where is Noa?". 

Or his plush bright yellow Pluto, held off to one side, "Segev, where is Pluto?" And then the cautious yet rough sliding of his eyes towards that side. "Good morning to Segev! Good morning Pluto". Sometimes he will smile to this as though there has been a new kind of awakening. 
I touch his tongue and say to Segev, "this is your tongue, stick it out, like this. Ehhhhhh". And after many many times he was able to very slowly, almost imperceptibly at first, force his tongue out of his mouth. He might be able to do this on cue two or even three times in a day. So things continue to "develop", to change in a way that is not negative and I continue to look for ways, after all these thousands of days of care and concentration (4594 days to be exact) to increase our interaction with Segev, his enjoyment of our company.

I don't hope for the best...I see the best there is at the moment and use that to build to the next. Stringing them together into something very very worthwhile. 

This life of his is so intense with his stuporous moments, highlighting that which threatens his health so much, his seizures and his lungs and his intestines and his own brain. His disinclination to breath and the unconscious silence for days when his lungs have filled to overflowing. But his smile, is absolutely electrifying and I am so thankful for that.

October 04, 2010

Complaining is not something I find attractive and if some might perceive my writings to be such, that would certainly strike me a blow. Never the less I have seen that there comes a moment for many bloggers when they feel it prudent to allow their readers a detailed description of their environment, to more fully appreciate the influence of daily surroundings that one is subjected to.
Therefore I would like to describe a little of our living circumstances, something that I touched upon lightly here .

I blog from a computer which I have because someone threw it into the garbage and I was able to fix it. It requires regular maintenance as it is about 8 years old and I switch out parts every so often from other old computers people throw away.

I have caught as many as 15 in one month.
Here you can see the cages I use every night to catch the rats that infest my rear balcony. I live in a village in the countryside and for years let them be, there's no food on the balcony, anymore, since I no longer keep rabbits. I declared war on them only after they broke into the fort knox-like cage I built after one of the two "males" had a litter.

from our bedroom window
Here is where jackals live. Yes, jackals. I see them wandering about during the daytime without a care in the world. Which would not bother me if my area were not the country's centre for rabies. The local council will not come to catch them unless you have actually been bitten.

Because they are building two new houses on the property I have to keep the windows closed from six in the morning till about four thirty in the afternoon because of the dust and dirt that would otherwise damage Segev's breathing further. Until this construction started I had a parcel of 7000 square meters of pecan trees and grapes and field as a playground for the kids. 

Except in the summer. In the summer we have these:

One of many Palestinian vipers I have caught, the most poisonous in the country

Muskrats abound but usually stay clear of the house but when I see them hustling through the field I get a shiver down my spine. All of this is part and parcel of living in the countryside and I don't mind it at all, except for the rats.

The house I live in is close to fifty years old. About half of the electrical wiring is original, you know, the kind with woven cloth insulation. I  live upstairs since the entire downstairs was never developed for living, serving as the regional winery. I've looked for a better place for three years, having stopped since the prices went up so much. The options I have are: second floor which is always nice when you have a 31 kg child and a forty kg wheelchair to move up and down those stairs; live in a shack; find illegal income to pay for a nice place. I must stay living in the village since, while Segev is at his mothers I need to be there daily to either check on him, treat him, or when there is an emergency, be able to reach there in less time than it would take him to suffocate to death. 

Life's nowhere near perfect. I am, due to Segev, able to work two days a week in my profession, which is entirely based upon housecalls in an area over one hour's drive away. It has happened several times that I've had to rush home, sometimes directly to hospital, because Segev was injured or severely ill. I cannot count the amount of income I have lost due to this specific reason alone.

In the winter the temperature in the non-heated parts of the house, meaning everything but the living room and my bedroom, is 13 degrees Celsius (55 F), yes it is actually warmer outside than inside the house. In the summer the house averages 34 degrees Celsius (93 F). At night it cools down to 33 C.

The winter is one long constant attempt at keeping Segev's toes from turning blue as his circulation is minimal, having no natural muscle tone. Hot water bottles and microwaved pillows rotate from under his legs and on top of his feet incessantly. With the air-conditioner on heating and an oil radiator added, the temperature in the room after about 12 hours becomes a balmy 21 degrees Celsius (70 F)and even with a humidifier, as dry as the desert.

When paint starts to peel, you can't just paint over it, you have to remove the paint from the entire wall. Painting would take days of work where I can at best muster an hour or two at a time and is expensive. It is not a health hazard to have peeling paint so I ignore it.

I defy anyone to show me water that is "harder" than what constantly clogs my pipes and cover everything with calcium scale, rendering the heating element in the water boiler useless within a week of replacing it. The pipes feeding this house are "agricultural" pipes; greater in diameter and softer metal since the quality is less important for crops and it was cheaper when installed decades ago.
On the right is a watercolour my eldest made when he was 10 years old.
When I have asked for help from people in the village, to keep their eyes and ears open in case a house becomes available the best thing that I've gotten is, "have you tried the newspapers?" Okay. I. Will. Do. That. Or, no response at all. I've made it clear in the asking that I need the place because where I live is not apropriate for Segev's health. If I were on the ground floor I might even be able to occasionally take him out to the garden for fresh air and a few minutes of sun.

The village itself is nice and cozy and generally the people are very good, very sociable. That I am a shut-in for 12 years has escaped people's attention and I blame no one. In order to move to another place I also have to find something for Segev's mother, since Segev is there when I am working. This complicates matters significantly. Again, concerning work, I have the skills, experience and the fortitude that made it clear those long twelve years ago, I would be responsible for the care of Segev, allowing him a chance to hang around a few more years, rather than placing him in an institute, which was discussed here.

The rent I pay is apparently sub-market so I am lucky in this sense and of course there are many options out there for those that work full-time, or rather, that get paid for all of their work, since taking care of Segev is 80% of my work. Or for families that have two incomes, which is definitely the standard here, hence the high market prices. People are expected to pay more since both husband and wife are working.

I've had help over the years. In the past my Parents were sometimes able to help.  My in-laws helped. Occasionally a friend was very generous and my son works part time so I've even had to ask him to pay for groceries on occasion. My daughter offers me her birthday money. I canceled my life-insurance years ago because of the premiums. Don't own a tv and thus also no cable. Canceled the extra family health insurance since the standard one is sufficient. Use skype instead of long distance calls. I cook very little these days, though I've been told by many I could open a restaurant, but special treat night for the kids is pizza from the supermarket. My kids have never asked me to buy them "in" clothing or shoes. My son has a computer that he paid for by himself, the same goes for his driving leassons. My daughter buys herself a handbag from babysitting earnings. All great ego-building stuff for the father you want to be, right guys?
This week I will speak to the principal of my children's school and see what can be done about the costs of extra-curricular events like the yearly school trip. They both realize they may not be able to go.

I was thinking that it couldn't hurt to know. If keeping Segev alive with a modicum of quality and dignity was a task that few could stand, staying positive and content and not apathetic, as I hope you have seen me through my blog, while carrying the responsibility, well that may be an entirely different matter.
I hope you've enjoyed this little peek into my life, if it sounds like I was whining, even just a little, I have succeeded and will hopefully be done with that for at least a few months. 

October 03, 2010

O Glory

Another fairly typical weekend. Segev was with me for 48 hours. All together I slept about 8 hours out of those 48. Saturday Segev intermittently complained and/or cried from eight in the morning until eleven thirty at night. He also vomited, a constant danger since he developed a new kind of cough. 

All manner of treatments were tried for his pain and discomfort, all with only temporary effect if any. I know his body so well and can feel much of what goes on inside his body but this time with little effect. 

Finally I was able to use a complicated manipulation technique, not without its dangers, to release several ribs which were contracted towards each other. Segev has an increasing problem of altered bodily alignment on his right side, affecting neck, shoulder, upper and lower back. The manipulation, an improvised and intuitive combination of traction and counter pressure, worked and he became relaxed and at eleven thirty fell asleep. 
He "woke" a few times from seizures but was definitely able to deepen his slumber and rest for a few hours, waking later several times as usual in order to cough which allows me to hone my jumping-out-of-bed-at-all-hours-to-suction-him-while-I'm-still-asleep technique, turn him over to his other side, change his diaper and give him physio when the inevitable mucus plug prevents him from fully getting air. That last problem rarely escalates into the most frightening thing that can happen to Segev, more so even then when he stopped breathing in his sleep: to see him conscious as his body convulses, violently fighting to take a breath until I can, just as violently, hammer the mucus plug from its stranglehold on his bronchial tube is quite simply, Hell itself.

In the morning, rising early, no possibility for my resting would manifest as instead another exercise in futility received its opportunity: Segev finished a med this morning but, always thinking ahead I had gone on the previous Wednesday to the pharmacy to order that particular one. The holiday started that evening, yet when the pharmacist called the supplying company still early to place the order they did not answer the phone. Wednesday and Thursday were holiday and they bridged Friday (Saturday is the sabbath here). So since they didn't answer the pharmacist's call, the importer via the pharmacist could not tell me until this morning when I went to pick up the drug that they don't have it in stock!  The prescription already having gone through I was fortunate enough to catch the pediatrician in her office and get a new one and after many phone calls find a pharmacy who had stock, which was only a 45 minute drive away, 30 minutes back. All these delays meant I had to miss part of work, two house-calls worth.
I'm sure my landlord will understand.

Speaking of houses, by the way, my next entry will be about that; living conditions.