Forty eight years ago, my life changed in an instant. I was a masters-level clinical nurse specialist and a school administrator, and in the blink of an eye, my new role was as a mother of a profoundly disabled son.
At the time, not only was there no support group for me, the prognosis was so grim all I could think of was how I would go on with my life.
The doctors recommended that we put Rod in an institution. I had done an internship in the Missouri State School and Hospital system and the places were grim and the care terrible. I felt my only option was to bring Rod home.
My story has a happy ending. Rod defied the odds and go on to become a college graduate in spite of his disabilities, but I still carry the memories of how scared I was when he was born.
The first time I went to Aleh Negev -- which provides high-level medical and rehabilitative aid to severely disabled adults and children in a caring, compassionate environment -- my reaction wasn't what I expected. I was impressed with the beauty of the place, the love of the staff, and the many options available to help the profoundly disabled. But all the memories of Rod’s birth and the struggle of his early years came back and overwhelmed me.
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| The author (right) with her son, Rod. |
I have gone back to Aleh Negev many times. Each time has been more meaningful to me and I really understand what it means to so many. No disabled child is an island. The entire family is impacted. As a parent you feel so many conflicting emotions from guilt to profound sadness, but you still want the best for your child.
Thanks to Doron and Didi Almog and Jewish National Fund, we have given these children a place where care is excellent, where parents can feel that they have support and can go on with their lives and be productive instead of only taking care of their child.
So many people contribute to what Aleh Negev does, not only the staff, but the countless JNF donors who make it possible to give such care. I found my heart with the JNF Disabilities Task Force and feel that through my efforts I can help other families face what I had to face with greater ease.
