On becoming twelve 8.3.2010

My son Segev was born with not much more than the will to live.
He is fighting a war of survival for twelve long and hard years. Unable to fend for himself I have tried to provide him a mantle of protection and have worn it to keep his plight dignified, his suffering minimal and his light shining.

My struggles have been his breath and his breath has been my light.To procure safety i have worn out friendships and marriages, worn down my mind and body and clutched at straws willingly.

His heartbeat has become like the throbbing of my soul and I believe to know what it means to say to hell and back again. And all this without his knowing, without his caring if i did or didn't do. Without any awareness that there is a difference between life and death.

He is such a tenacious little man and i am proud of him. He has let his voice be heard, having said one word -Aba. And that one word has made my very soul quiver. It has shown me that within the sickness and decrepit existence resides a person who yearns for life and thus is beyond reproach.

I don't know if he understands what it is to give up and in understanding would ever choose to do so, but by setting example in not giving up I establish a creed which is made right by the success of his continued existence.

Nihil omnino periit - nothing is ever lost. Segev has shown me what it is to live netto, pure survival. And it has taken an enormous effort to sustain him, stripped nearly to the bone and yet buoyantly he somehow remains in the stream, nearly taunting.

This pure essence of life is much more than merely physical survival though; because of a simple element that he has demonstrated time and again. That which with time we take for granted in any other scenario of parenting; the need for love and affection, it's power to calm and give security and in the end its ruling authority over all adversity.

While i refrain from coming to a grandiose conclusion, the accruement of each important moment pays dividends that i know, i know, will continue for all of my life.

Monday, March 7 2011
Happy Birthday

It seems Segev, that if more than a few hours pass that you are not with me, I start to feel lost. I feel a fear creeping over me that I am forgetting what you look like. It feels as though each moment may be the last and the intensity of this feeling is as powerful as anything I have ever felt.
How can you have a sense of loss, when you haven't lost something yet?

Segev I have held you in my arms until my arms became stiff with ache and I did not care. When your brother and sister kiss you I have to hold back tears. Both from happiness, which I shouldn't hold back, and from sadness which I want to hold back as though tears are me admitting to something I don't want to admit to. This is not fair to you, my son. This is me being heavy, weighted down by a view of things which does not suit your nature, your absolutely positive being, so kind, never asking for more than you need. Never complaining without just cause. Never doubting that only the best is being done for you even when it isn't certain that is the case. Never being careless or spiteful, never holding back.

I have not been the father to you that I hoped to be, I did not provide you with the happiness that I wanted to, but of course it is doubtful that anyone can for another person. This is real life after all. But I just thought that there would be one thing in life that would work out the way it was supposed, the way I thought would be satisfying. You may think you have nothing to complain about and it is true that you are spared a great deal of misery because life is very simple when you are doing little more than surviving. You smile and you may not remember this but there was a time that you would laugh. No, not from a seizure, a real laugh that was more powerful than any drug could possibly be because it came in absolute contradiction to what anyone else in your condition could possibly muster, facing such hardship.
There are no words to describe how proud I am to have you as my son, to be able to share time with you. I have worked hard to make something positive out of this experience for you. You may not understand this, but I know that you understand that we love you.

It is your thirteenth birthday and I have always lit a little candle for you and watched you for a reaction to my wish for a happy birthday for you. And I have blown out that candle for you because you can't and I haven't cried even once about this, until now.

You are beyond sweet and you have accomplished more than I could have hoped for with a fortitude that is beyond understanding. I don't think someone can know how much you have fought to get to where you are now. You are thirteen years old. Just a little boy who has to experience simple things both good and bad as we all do growing up. You'll have to do without wisdom complicated by contradictions so rampant in our world. You get to grow up in a world which is not confounded by doubt. You get to see the world without any ugliness or frustration because you see things only in their pure form. This is a beacon of light which can be difficult to look at for someone not so pure, who feels guilt that you should have to suffer. I know this is unreasonable to think, but that is my nature, just as you have yours.

This is your thirteenth birthday and I hope that in telling you these things I can finally be done with them because I feel actually very positive. More so than ever before. It has taken me a while to understand these things, Segev. Your father is a little slow in these matters. So I thank you for sticking around, to let me learn the things I most needed to learn. That is a wonderful gift you have given, to know that we must be true to our nature. Of course you could not be anything else but yourself.

It is your thirteenth birthday and I am very happy for you on this day. You may not show any sign that it is a special day for you, but I guess that's what any parent can be blessed with, knowing that it is a great day because it is the day you came along for the ride, and you decided to stay.

Happy birthday Segev, be healthy, be strong (as I know you will), we love you.

March 8, 2014

I may not be practical in all matters, but I do know what I feel.  The stories on these pages, of my son Segev’s life, are often filled with quixotic statements in an attempt to entice calm in the face of the storm and paint a picture of romantic propitiatory yearnings, as though we are not truly blessed by his existence.

Today is a milestone of epic proportions, though I find myself reticent in celebrating the moment, as these last months have been quite hard on us all while Segev still remains with pneumonia, already since early December. He is again on IV antibiotics and even on this special day, definitely not feeling well.

My son is a bright light and a heavy burden. Both residing in that sense of responsibility, the desire to create respite and fill the lack of understanding that we share, I of his mind (but not spirit) and he of the world around him, with beautiful experiences while wistful days and tortuous nights have blended into unexpected years.


I’ve never made this statement previously, having always preferred to almost imply, (though I suspect this too is a form of denial) but let it be said with a strong and clear voice, that Segev was born with a condition that simply cannot be outlived. We don't like to say such things but considering that he has reached this point without any glimmer of expectation to do so, the functional diagnosis of Ohtahara syndrome alone is enough. With everything else, (the abundance of medical terminology always swirling about anxiously, not just window dressing) we are in miracle territory.  Typical of this extremely rare syndrome (while there are many causes, most remain unknown), it begins its careful selection of children at birth and hunts down their life force with catastrophic tenacity. Barely a handful sees the age of sixteen but thankfully knowledge is gaining, especially the sharing of experience, to the benefit of all.

When I write about my son, I always do so with a number of additional children in my thoughts, whose parents must go through many of the same kind of difficulties, day in day out.  And it is from within this fortress of exhaustion that our minds are trapped in an altered state, dysfunctional, limping but mostly in a way that is difficult to convey. At any rate, it has caught mine and the contortion, I suppose, may be permanent.  But I keep a keen eye out for good moments and relish every conscious smile or sound my son makes. Often caught in medically or neurologically induced stupor, Segev can unexpectedly surface for a brief moment of consciousness and then sink back to labyrinthine depths, impervious to my best efforts to elicit a response. So each moment is savored, each smile communicated to the relevant parties, each good moment provided recounted, without the need for embellishment.

And how resilient he is, repeatedly surprising in his unrelenting desire to be here, though time and again we have been lulled into believing that perhaps his resolve is wavering. Not so.

When I see Segev’s simple acceptance of what comes, his quickly letting it pass without any undue attachment to pain or sorrow, I am staggered by the simplicity and thus importance of his way. It is something to aspire to. Because the truly great things we aspire to are the ones we can never actually reach, but in attempting to do so, we rise in increments above who we were.
He sits there on a perch, I didn’t put him there, it is undeniable that children like my son, whether born into this condition or being put there through mischance, possess a purity of being that we simply cannot obtain, but that we can decide, is worthy of emulation. This does not mean that they are worth more than you or I, but most certainly not less than you or I.


My most gentle and sweet boy, Segev, today you are sixteen and I am grateful beyond words that you have given me a way to express love, the ability to understand things that otherwise I could never understand, never even knew existed. Nothing should be taken for granted and if we can truly find peace in the moment, nothing more can be asked, nor given.

His condition

Segev was born  8.3.1998 and eventually diagnosed with Ohtahara syndrome type epilepsy (early infantile encephalopathy with burst suppression) which later evolved into West syndrome (infantile spasms) and/or Lennox-Gastaut. Ohtahara, with its tell tale seizures at birth (or even earlier) is almost always fatal, often present with multiple other neurologic and medicals issues. Segev is one of a small handful of children who have survived into their teens. 

His first month he spent without a name, struggling to hold on to life. Segev is a Hebrew word which can be translated as, "lofty" or from its root, "rising above". A very very fitting meaning I believe. Segev is not normally given as a first name. 

I don't know how he survived those first years. There were so many times when his life was in danger. But then, today is no different. More often than not I went directly against the advice of specialists, as can be seen here . I think it was equal parts my  constant open-minded searching, as well as medical experience, his incredible strength and luck that allowed him to survive the early ignorance of dealing with such a convoluted child as Segev.

Segev was born with several deficits in his brain, including missing part of his cerebellum, missing the myelin covering in some areas as well as migration defect (brain cells migrating to the wrong place during development as a foetus) and dysplasia of the brain stem. I suspect also that he falls under the category of pontocerebellar hypoplasia but have not had this diagnosis confirmed.

Segev was diagnosed with optic nerve atrophy in addition to cortical blindness.

Segev suffers from Bronchiectasis as a result of recurrent lung infections due to both reflux as well as shallow breathing caused by massive kyphosis. Exacerbations with pneumonia-like symptoms occur weekly or biweekly in certain periods, rarely going a month without being ill. He requires supplemental oxygen.

Segev is quadraparetic with no motor control over his body. He cannot walk, cannot stand, cannot sit, cannot crawl, cannot roll from side to side nor most reflexes. Segev has no speech and rarely vocalizes.

He has poor tissue integrity and blood circulation due to his state of paralysis. He does not possess control of his bowels.

Segev has a g-tube for feeding which is a life saver as it allows hydration and the administration of medications even when he is unconscious, as frequently occurs when he is ill.  Unfortunately the surgery resulted in the creation of intestinal adhesions, complete blockage and subsequent rupture in several places.  Life saving surgery was performed, after which he remained was in critical condition for some time.

Segev requires three Anti-epileptic drugs plus the ketogenic diet and continues to suffer roughly 100 seizures a day.