Light and life

Together, my son and I set out on a long and difficult journey.

April 8, 2015 11:41
Or Chaim

Or Chaim and his mother, Miri, during a celebration at Keren Or.. (photo credit: Courtesy)


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In 1998, I was 40 years old, living in Florida, and was pregnant for the seventh time. After many years of trying, six miscarriages and endless amounts of distress and crying, I was finally giving birth to a son.

But my joy was tempered by the fact that my son was very ill. Born very premature, he was encased in an incubator, where he was connected to a ventilator and so many other devices and tubes that you could scarcely see his face. My son was one day old and already he had to bear so much pain and suffering.

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The doctors at the hospital explained that my son’s chances of survival were minimal, and that if he did live through those first critical days, he would be damaged for the rest of his life. Every possible frightening and unacceptable word one can imagine as a mother was used to describe my son: severely retarded (that is what they said back then), blind, paralyzed. They told me that he would never crawl or stand, eat independently or speak, and he would never say Ima.

No fewer than 10 doctors tried to persuade me to leave him in the hospital and sign him over to become a ward of the state. They almost succeeded. But at some point my heart took over, as if an angel were whispering to me, “He is yours, your son needs you, especially now.”

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But I was not the only one who had to make a decision. My husband could not accept a life that now included such a fragile child. He responded with fury that I was ignoring the reality that had been so clearly presented to us, and that I would be enslaved to my son’s care for life. How can I describe the deep pain I felt at my husband’s reaction to my decision to bring our son home from the hospital and raise him? There was no moving him. He gave me a clear ultimatum, that I must make a choice. Difficult as it was, the choice was clear. I followed my heart.

Together, my son and I set out on a long and difficult journey. Against all the odds I named him Or Chaim (Light and Life), because I longed for him to see, I longed for him to live. Probably deep within, I hoped that by some miracle his name would actually lead him to a life of light and meaning. But in the beginning, that was too great an aspiration.

For 10 terrible months I walked in the desert as, together with the doctors, we fought for Or Chaim’s life. I never gave up, even though he was declared clinically dead on a number of occasions and I was called to his room to say my goodbyes. But he was a fighter and refused to give up. I never stopped talking to him, telling him wonderful stories about the world that awaited him. How thrilled I was when suddenly one evening, as I sang to him, the nurse pointed to the monitor and showed me how his vital signs were improving. Or Chaim was responding to me.

Finally, his medical situation improved and stabilized enough that we could leave the hospital, so I decided to bring my son home to Israel. Yet once in Israel, the hardships of our journey did not end. The doctors were unanimous in giving Or Chaim a hopeless prognosis.

All those terrible words were repeated clearly, with no room for doubt.

But after months of darkness my prayers were answered, and I finally did come home to the Promised Land. It happened when I came for the first time to the Keren Or Center in Jerusalem. I was finally surrounded by people who believed in Or Chaim and in his ability to develop and progress. It is impossible to adequately express the feelings that overwhelmed me.

Keren Or became Or Chaim’s second home. It is the only school in Israel that teaches and cares solely for children who are blind and have additional disabilities.

Loss of vision makes the world pretty inaccessible when you have other disabilities. Imagine trying to convince a blind and impaired child that it is safe to move forward, that he can reach out into the unknown without fear. At Keren Or they focus on assessing and managing the impact of vision loss on the other disabilities so that each child can reach his or her full potential.

I felt the difference immediately. The staff at Keren Or treated Or Chaim like the precious and valuable child that he was, not just a child with many disabilities to be helped. He was surrounded by a host of teachers, therapists and caregivers who believed in him from the start, challenged him, and never gave up.

They respected me as a mother, and I was an integral part of Or Chaim’s holistic program. I attended his Individual Education Plan meeting every year so we could work out his goals together. He received physiotherapy, occupational therapy, hydrotherapy, speech therapy, music therapy, and so much more. The Keren Or staff believed in Or Chaim, and he felt it and returned their faith in him. Keren Or became part of our family, and I don’t know where I would be without their support, encouragement and constant presence.

My son has come such a long way, more than I could possibly have believed all those years ago. Or Chaim has learned to stand, walk, speak and interact.

He can do things for himself that we may take for granted, but that we were told he would never be able to do. He sings, has recently begun learning piano, and appears with the Keren Or band – an unimaginable achievement considering where he started in life. Yes, it appears my son is musical and has talent.

There was a time when Or Chaim could only communicate by screaming out, and now he sings to me constantly.

It brings me full circle to that moment in the hospital in Florida when he responded to my lullabies, and it gives me more joy and love in my heart than I ever thought was possible. I have no words to describe the miracle of Keren Or.

So this time of year, when we gather together to observe Passover, I celebrate twice. The first time I commemorate our liberation from slavery and the beginning of our freedom as a nation. The second time I celebrate together with Or Chaim, and I am reminded of what Passover truly means to both of us. We celebrate the personal freedom we have achieved after so many years of struggle and adversity.

As I look back, I realize that those doctors in the Florida hospital thought they were offering me a life free of “enslavement” by giving up my son, but I have learned that in order to be truly free, one has to earn and value it. One has to travel across the desert, because there are no shortcuts. I may have chosen the more difficult path, but by helping Or Chaim become as free as he can be, I too feel free.

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