A legend and a legacy

I've written about my friends Doron and Didi Almog several times. They are amazing people who I've known for nearly seven years now. Their son Eran, who was born with severe developmental disabilities, died suddenly 7 years ago at the age of 23. It's hard for me to imagine, knowing what I know now, that they were so early in their grief when I met them. They were and are amazing people.

General Almog was the first person on the ground in Entebbe in 1976 - part of a clandestine mission to rescue 108 hostages whose plane had been hijacked and who were being help captive in Uganda. He was the commander of that mission and is a celebrated hero in Israel.  He felt led by his deeply rooted commitment to never leaving a wounded soldier in the field. Several years earlier, during the Yom Kippur war, Doron's brother was left bleeding on the battlefield for days. He was returned to his family already dead. The hostages were to him the wounded soldiers. He would not leave then behind.  He is a national hero in Israel. One of the most celebrated.

When Eran was born, he felt the same. He and his wife knew that they would never leave him behind.  Their commitment was to give him a beautiful life, to make sure that he could experience everything to the fullest in a way that matched his needs and abilities. He and his wife recognized right away that there was a stigma. That the other parents would proudly brag about their children. "Of course their children were great!", Doron said, because they belonged to their parents!  Their children were considered an extension of their parent's own greatness. There is ego in the pride. But what do the parents of a severely developmentally disabled child have to brag about? Eran could not feed himself, or go to the bathroom by himself, or even say one word - "not even Aba (father)". But the love a parent feels for their child is unconditional. Those things should not matter. "These children are the most innocent in society - full of love. They cannot be left behind."  Doron set about building a village that would accommodate special needs young people and adults - not a sterile institution but a community with green grass, shaded areas to relax, a multitude of special therapies (pet therapy, equine therapy, art therapy, music therapy, hydrotherapy). The place is called Aleh Negev - a place that they believed Eran would live out the many years of his life.  But that dream would never be realized.  Eran died suddenly and unexpectedly as a young man. People talk about Doron's son who was developmentally disabled a lot in my organization, but they nearly never speak about the fact that he's been left grieving - a bereaved parent to a special needs child.  

"To rescue 108 people who were he captive for several days - what is that?", he said. "My life's work is to help those who are prisoners in their own bodies every day of the lives."

When I first met them, I was driving around with Doron's wife and I told her how wonderful I thought it was that she was raising money for this important village. She set me straight, crying in my car and said, " I hate that we are traveling all over the world raising money for a village my son won't ever live in". At the time, I could only see the good that there were doing. I stupidly figured they'd made sense of the loss when they were actually writhing in pain. 

We met Doron on Thursday in Aleh Negev. We heard him speak. We visited the pool, where residents were loudly playing with gigantic smiles on their faces. We visited the wind chime garden and the petting zoo and the playground built for children of all needs.  I had some time to visit with Doron on my own and cried and cried about the unfairness of life - him missing Eran, me missing Max - us longing for our children.  He comforted me with his compassion, his knowing eyes and his embrace. "It's so hard", he kept saying. I asked him how he standed being in the swimming pool area, Erans favorite activity - the one that the two of them enjoyed most together. He just said that his wife can't go there. "It's too much", he said.  I know "too much". For sure. I know it well. He showed me photos of his three grandchildren and I showed him photos of Mo. 

When I feel like I can't move forward, like I want to lay down and die - there are certain people I think about. Doron and Didi are two of those people. Their struggle, their pain, their triumphs, joys, and accomplishments give me strength. I am beyond honored to call them my friends. I feel beyond grateful to have been able to spend some time with him, here in Israel, in the village that is his son's legacy.


Joyce Sachartoff said...

We met him on a visit to Aleh Negev almost nine years ago. It was a profoundly moving experience that we've never forgotten. I am in awe of people who have every reason to crawl into bed and pull the covers over their heads, yet get up every day and make a life for themselves and their families.

Taryn said...

An inspiration for all of us!

The Blitz said...

He spoke to us on our Federation special needs mission in 2012 and we were all deeply moved by his story. Thinking of you...

Susan Chadney said...

Love you