March 08, 2014

MARCH 8, 2014

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.


  1. Having a son like Segev and like my son Adam, puts us in actual possession of the "holy grail." Many people have fruitless searched for this vessel of divine grace without success. It has been given to us as a gift from the universe...are the lucky one. Our children are also lucky as they represent a minute fraction of humanity who can receive and give unconditional love...purity in the essence of being. A very happy birthday and I believe it will bring heath and joy....

  2. Segev, que el día de tu cumpleaños sea feliz, que puedas sentir el amor de tu familia. Te abrazo.

  3. Happy Birthday! Congratulations! My name is Philip Ryan and I have the same disease your friend Jack had. I am 15 years old. I have a fatal disease. I am blind, cognitively delayed and non verbal but my Mom, Pita and those who love me know exactly what I'm saying most of the time. I tell them to pray each day. I do have a few words and pray is my favorite. You touched my mom deeply today by the capt. of I am broken but you can not break me. Thank you! God Bless you! The moment is all we have which is everything - thanks for the reminder- to let go of the suffering as much as we can and to be still in the moment w/o fear- is the grace we receive.

    1. I truly appreciate your comment and wish you all the best!

  4. I am thrilled for you my brother and mostly for my young "nephew" who continues to be an inspiration to so many! Happy birthday, Segev!

  5. To be surrounded by love is the sweetest of gifts.

  6. Yes, gentle and sweet. And filled with grace. Happy birthday to your darling son and continued strength and courage to you, Erik.