April 01, 2017

Oh my Love, my love

All fled
All done
So lift me on the pyre
The feast is over
and the lamp's 


March 8, 1998 - March 24, 2017

He told me to tell you, “I love you”. Yes, you out there. To acknowledge that, while you couldn't be here, doing any of the things I did to keep him alive, each and every day, you were watching and listening.  I tried my best to be his sunrise and you were there, hoping for the best, cheering and taking courage from our struggle and invested in the beauty of that timeless reward. So thank you for that.

Death is not pleasant or beautiful but as far as it was possible, I want you to know, that Segev died peacefully, with us there, bound in love. He went quickly, so quickly, without any hesitation. His body had become too weak, so weak that I had stopped pressing on his chest to help squeeze out the excess carbon dioxide building up in his lungs, not only for fear of breaking his ribs, but because in those last minutes there was no place anymore for lifesaving measures. It was time. The sense of the end weighed like a heavy curtain, stifling my thoughts, making my heart pound.  

We had said our goodbyes to Segev before. Many times this last year his life-force hung by a thread and could have been cut in each of those moments. But he came back, much worse for the the wear but still managing to smile. Oh my God that smile, like a drug coursing through my veins. How could he still smile? Still react as I continued to gently prod his spine back into place, massage his legs, sing in my horrible, rasping singing voice. Still acknowledge us with his amazing, endless eyes, despite enough sedation and medication to threaten the life of a healthy adult.

Then, a moment, captured in this picture that was taken less than a week before Segev passed, after a lifelong struggle against illness. He shone like a guiding midnight star, a beacon of absolute willingness to love, but this time for merely two minutes, before fading again into his stupor. Fading, fading. Alternating between barely breathing and fighting for breath. 

No more fighting Segev, you have nothing to prove. We all bear witness to that.

But before the end, I would have a conversation with Segev, about an hour before his death, which would change everything. I let him know that it was alright to let go, that the fight had been won. Victory declared. But he already knew that, and I felt a little ashamed for having thought he would need my permission. He was somehow finally in control. 
I let him know how sorry I was that it had come to the end, full well realizing that I was simply overwhelmed at the prospect of losing him, as I knew, this was really the moment, this was it. But he admonished me, and I heard a voice say, “This is not something you can hold on to, this death. It belongs wholly to Segev. You cannot touch it or alter it, it belongs to him.” And as I heard this I felt a slow ebbing of sadness, a slow release of the tightening in my stomach. Barely a tear flowed and I no longer looked at my son, in that one moment, as though he was a frail and battered boy, but rather as a man, who was bravely facing his own demise.

The moment had arrived and his breath, a sound so well known to me, which anchored me to my sanity, was still. I called out, as I held his head in between my hands and kissed his face; “Oh my love, my love!” Nineteen years of tears denied, found their way out, finally.

I rose from my son, lying ashen and still and pulled Shoval and Noa close, as tight as I could as we cried and sobbed. “ I love you and am proud of you”, I told them. Then Segev's brother and sister went to him for a final embrace, a hesitant, final goodbye, uncertain, as though there is a proper way to say goodbye to their beloved brother. Who they loved so very, very much and helped in so many ways. Each with their own methods and attentiveness, down to the most basic practicalities of care that their brother needed, as much as they could, whenever they could.
I turned to the palliative physician, who has accompanied so many on this path, and said, “ It's not every day you witness a legend's death”. 
I could only vaguely notice that he went outside, this quiet and gentle doctor, holding back tears. 

I washed Segev ever so gently, after the good doctor had removed the PICC line and catheter. As it had become a part of him for fourteen years, allowing him to live, I left the PEG button in his stomach. I laid him on his bed and at my behest my daughter picked flowers and made a beautiful arrangement around him. 
His expression was that of absolute peace and he wore a soft smile on his face. Just like that he lay until the funeral, at peace, smiling, frozen in time. And then it was time to let even his gentle body go, that body that had called out to our hands with such intensity and regularity throughout his life, yet he, with such grace, as much a balm to us as our love was for him.


  1. The conversation you had with Segev before he passed was beautiful, two souls communicating at the most deep level. His impact of super human resilience and your impact of unconditioned love bear a profound testimony to the love of a father and son. The impact of the "story" resounds around the world and it is my hope that people allow it to enter their lives. I know that we will remember because to remember is to honor and validate those 19 years. Peace, my friend....

  2. Oh how did I wait for these lines... I was sure some day you would let us know. Thank you. I know the cost of sharing those moments, so private, so intimate, so painful to translate into intelligible words. Thank you. Segev has been loved by many through your posts and blog, he has strongly existed in many minds and been the prince of many hearts around the world. These people mourn with you, as I do.

  3. We love Segev. He will always be remembered for his tenacity and strength and for his beautiful smile that only you could bring about. It was good to talk with you today. You are in my thoughts and my heart as you journey on without the physical presence of your beloved Segev.

  4. I could barely read this through my tears. Thank you for so eloquently expressing the love only a parent can know. Because they are us and we are them.

  5. My deepest condolensces.My daughter Elif died at the age of 2 and a half this January of the same illness. She also fought until the very end like a lioness. Your care and testimony was an inspiration to me these last two years. I wish you and your family the very best. And may Segev rest in peace.

  6. Segev's smile in that photograph, a smile you often wrote of, which shone through his pain and disability, is precious. And this post is an eloquent, moving tribute to him.

  7. Thank you for sharing his life and his passing. Beautiful boy and man. I'm sending you love and peace.

  8. Beautiful words. You and Segev will forever remain an example of love and strength. My deepest condolences to you, and his brother and sister. Thinking of you and sending you love.

  9. Dear Eric, several months ago I read your entire blog. Thank you for sharing your and Segev's story with us. You are the most remarkable father,man, and writer. I can't imagine how strange your days must feel now. I'm sending you a big hug from Canada.

  10. Your story, your life, with Segev, has been remarkable. Such an amazing young man with such a devoted father, and so much love. My heart reaches out to you and your family.