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.
|WITH BROTHER SHOVAL AND SISTER NOA|
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.