December 03, 2012

You again?

I write here because I love my son. I write because I believe that his story needs to be told, not for his sake, although I have been able to make positive connections to some very special people through his story, but because there are many who undergo similar devastating circumstances, thinking as I did, that they are doing so quite alone.
It has happened on several occasions that individuals who have entered my home in order to assist me with Segev or have gotten to know our situation have made comments of a similar nature to me.
Formed as a question the gist of the comment is usually,

What will be with you after Segev is gone?

Then, without further ado, these individuals offer to answer their own question:
You’ll be destroyed.
You won’t know what to do with yourself, you’ll be lost.
You’ll have nothing to cling to anymore.

A comment, by Genevieve Jurgensen, on my recent piece “Les uns et les autres” here on the blog, is of special value to me because she is a person who in her life was able to use great personal tragedy to create a positive force that emanates far and wide. She is an ambitious person who succeeded in having a very significant impact on road safety in her native France. I too am ambitious. My knowledge and experience as a para-medical and extreme caregiver has allowed a particular insight into areas which can benefit children such as my son and others in similarly catastrophic conditions. I would like to think that sharing certain aspects of our lives are part of an evolution of thinking and ability in dealing with such situations. My own doubts and concerns lie exposed in order to have a transparent conversation, a prerequisite to true learning.

What will be with me after Segev is gone? Perhaps rather startling, perhaps obtuse, perhaps an insightful question. But I have an ambition which transcends my time with Segev which is to show that despite the hardships there is something useful to be gleaned. There is something tremendously positive in the experience, despite the obviously difficult struggle.
When forging iron into a tool you must subject it too unbearable temperatures and pound it endlessly into submission. The same goes for the writing and hence understanding. Here there is no fixed form or certainty, simply the endless pounding of molten experience. Slowly form and function will be clear.
Resilience naturally emanates ambition. You can be broken, but that doesn’t indicate a lack of anything. Not perception, nor inclination. Not a lack of fortitude nor conviction.
The greatest resilience I have witnessed in my life comes from my son. Don’t they know that such a strength carries you forward? A preemption of certitude that will be waiting?
I know exactly where I want to be ten, fifteen years from today and it has everything to do with Segev, whether he is here with me or not.
So the next time someone says to me, ‘you won’t survive’, I will nod appreciatively, so as not to appear antagonistic or closed to ‘helpful criticism’ and remain polite. But I will be thinking only one thing to myself:



  1. STFU is a mild reaction to whatever it is that makes people seem to think all the normal boundaries of politeness are somehow not applicable. Especially in your home! WTF....

  2. I must wholeheartedly agree with "A." Although probably a mindless question, I would have ushered said person out of my home...that energy is not needed nor helpful.
    Our unity with our kids gives us a resilience which surpasses time and presence...they are always with us. And their story is life continuing itself...I somehow think that whatever the future holds, you will always be simply doing the good that you have learned....doing the good is what it's all about; that's the sustaining force.

  3. Your last acronym was, of course, what was running through my head, so I smiled, despite the gravity of this post.