March 03, 2012

who's counting?

It's not about counting up from the 500,000 seizures Segev passed some time ago. It's not about survival anymore. Not because there is no struggle to survive for him but because pure survival is a nihilistic concept and whether true or not, is no longer accepted by me. It's about integrating the experiences, filtered through my perception, to a modus vivendi that encourages, grows, makes whole.
The entire journey of the broken man, reduced to his basic elements in order to find the right balance to properly respect his son in a way which can see survival and dignity collide. It's about human beings without even the most basic defenses, not even reflexes, not asking for anything but finding a safe place regardless. It's about teetering closer to 'beyond my abilities' from chronic lack of sleep, lack of rest, lack of respite, constant worry. It's about the roar of the wounded lion, cornered. So it's about letting go.

Not just the things we are used to, the things we like but also letting go of negativity. Succumbing but not giving up. Being soft and adaptive like the tree in the wind - even if it means growing crooked to survive. Segev has certainly done it. I make an effort and let go of anger - only to see it boomerang in my face - apparently we easily deceive ourselves. I accept how others control situations that could help my son but how ignorance or the lack of that bare minimum, a basic sense of curiosity, keeps help from him and his condition moves through its natural state. And in that it's about being very busy helping him and feeling that I am standing watching, restlessly. It's not about complaining but rather, informing, learning. The more I understand, the more narrow my knowledge becomes, do you understand what I mean? Illness that requires more time for recovery but Praise! life there is recovery. And that recovery is no longer within the context of waiting to see when the 'old' Segev will return. There is no 'old' Segev, there is only now. There can be no comparison to what was although the past trials and tribulations give courage that also this time there will be a resolve. Now there is less.
Less of health, less energy, fewer friends, less support, fewer dreams and barely ambition. Now there is an evolving focus about what is possible to obtain, what can be done because the experience is mine. And the next crisis will still be more difficult, with greater fear yet also certainty because when a path is chosen and you are nearing the bend, you can't stray from that path because you can't know what will be around that bend, you must keep on going. And along the way, smell the flowers, right? I can't know how much of this experience has been something worthy for Segev but I feel it's my duty to try and give him every opportunity he can have. It's not much if you compare it to just about anyone else but then the point is not to compare but rather to be who you must be. That's life.
We can go against our natures and get into all kind of trouble. We need to be careful. But a child such as Segev has no way to manifest his will. Our interaction is bitter-sweet and I'm certain he has much to say about my care for him. He will be fourteen years old come the 8th of the month. I feel like celebrating but he has never felt good on his birthday. And now, fourteen years of extreme wear and tear leaves him so much less capable of joy. The old Segev is apparently gone for good. As it should be, there is change, even for him, which goes along with 'growing up'. Hard to think of that, that he is growing up in his own way because of the lack of communication on almost any level.

Out of my flow of thoughts, back to practical matters, doctor's visits await next week. There is no stopping, no rigidity. Applying the principles of fluidity I continue to be open to change and assistance, albeit filtered through my perception. I'm not certain there can be a birthday post this year, hence this pre-post. I know, it's not about counting our sorrows but rather our blessings.


  1. "Applying the principles of fluidity I continue to be open to change and assistance, albeit filtered through my perception."

    You continually humble me with your grace. ((())) You and yours remain in my thoughts always, hoping for moments of joy, of peace, of rest for you and Segev.

  2. Segev has everything he needs to make his birthday wonderful - you.
    You are the one who brings joy to him each day. He revels at the sound of your voice and the touch of your hand. He receives great comfort from your presence and knows he is safe. He understands if you are tired or impatient because he knows you will always be there for him.
    You are the one who will give him special birthday kisses and tell him how much he means to you. What else could anyone wish for on their birthday - to know that they are loved and treasured so much is the greatest gift.
    Happy birthday to a beautiful young man for the 8th of March. I will be thinking of you fondly on the day. xxxx

  3. A very beautiful, insightful post which I believe is full of the promise of life unfolding itself before our eyes. There are so very few people who have been honored to partake of such an experience and such a journey. It allows us to contact and touch and speak to that which is important. The external Segev changes, twists and bends on his journey, so does dad. The Segev which is life does not change in essence nor does the bond with his soul mate. Almost 14 years, so long and so quick and so fleeting. In a few months it will also be 14 years of care for my amazing synchronicity between an amazing community of people...miles apart, yet next door. Blessings....

  4. I'll add my thoughts about synchronicity right onto Phil's as I'll be celebrating seventeen years with Sophie on the 8th of March as well. I read your posts over and over, Eric -- always sensitive to the nuance -- the sorrow and joy and quietness and desperation. I am glad to know you and grateful that you've shared your Segev with us.

  5. Thanks for the comments guys, definitely a big help!