One doesn’t know another’s sorrow.
In January 1999 I received a call from a woman named Pam Smith. Pam told me about her twenty-year-old daughter, Rebecca, who was suffering from a fatal degenerative neurological disease. Pam phoned to ask if I would be willing to be the keynote speaker at an A-T fund-raiser she was hosting. I had never heard of the disease. Pam told me ataxia- telangiectasia is a very rare disease affecting only three Caucasian children in a million. Pam said she was inspired by a book I had written.
In 1999 I spent my days writing, delivering lectures around the country, teaching spiritual counseling at a local rabbinical seminary, and together with my husband, Rob, raising our two children, Adi, who was five, and Noa, who was three. I had been a congregational rabbi for seven years, but I chose to leave the congregation so that I could have more flexible hours for writing, for teaching, and for mothering. When I got Pam’s call I was feverishly at work on a new book of prayers, and life was good. I had a wonderful husband and two healthy children.
Of course, I agreed to speak at the A-T fund-raiser, and Pam and I set a time for us all to get together for lunch at a local restaurant. I had no idea what to expect. I didn’t know what a young woman with A-T would look like. On the appointed afternoon a van pulled up in front of the restaurant and Rebecca’s father, George, wheeled her up to the table beside me. She was quite beautiful, with straight shiny dark brown hair, ivory skin, and a glowing smile. When I asked Rebecca about school it was hard to understand what she was saying because her speech was so slurred. I could tell she was getting frustrated because I kept turning to her parents for a translation. Her body had been ravaged by this cruel disease. I could see Rebecca was angry. She was angry to have to be so dependent upon her parents at an age when she needed to rebel and carve out her own identity. All her friends were driving, were at college, were dancing at parties. And she was fighting for life. The pain in her parents’ faces was palpable. Pam said to me, “I don’t have bad days. Every day with Rebecca is a good day.” Yes, Rebecca was a gift. And I’m certain Pam treasured every moment with her. And I could see the sadness behind Pam’s smile. Why should such a blessed child have to suffer so?
Rebecca’s father, George, ran a very successful real-estate financing company. He was a self-made man who was used to getting what he wanted. The tragedy was, he had made enough money to give Rebecca anything her heart desired, but this man who was larger than life was helpless to cure his child. There was no cure for A-T. No treatment. A diagnosis of A-T was a certain death sentence. Period. George and Pam’s response to all their feelings of helplessness was to create a foundation to raise money for A-T research. Through their foundation they had already raised millions. Yet there was no cure or treatment in sight.
I couldn’t begin to imagine the torment Rebecca and her parents were living with daily. And the hope. Rebecca was considered something of a miracle in the world of A-T. Most kids with A-T don’t make it out of their teens.
On the day of the fund-raiser there must have been seven hundred people gathered together in support of Rebecca and her family. Every speaker talked about hope for finding a cure. They showed a video about Rebecca. I saw her walking around happily as a toddler and then we all watched scenes of her gradual decline, scenes of her bravery and her struggles for life. We watched her riding her horse with such joy. Then I got up and spoke about Rebecca’s courage and her family’s dedication to finding a cure for this horrible disease. That very week was Rebecca’s twenty-first birthday and Pam asked me to bless her. Rebecca slowly came up on stage all by herself with crutches. There was such determination and joy that shone through her eyes. I closed my eyes, put my hands on her head, and blessed her with a birthday blessing. I prayed for Rebecca’s health, for her strength; I prayed for a cure. I could hear the weeping in the room.
What did I believe? Did I believe in a God who could cure Rebecca? Did I believe God would miraculously undo what nature and genes had done? No. Not exactly. But I wanted to believe it. I remembered listening once to a preacher on the radio who said, “If God says you can catch a whale, then start cracking out the tartar sauce!” I prayed for that kind of faith in God’s supernatural powers and at the same time I prayed for Rebecca’s doctors. I hoped scientists could learn to correct the problem, treat the problem, cure the problem.
A scientist named Dr. Becket then took the stage to receive an award for his incredible breakthroughs in A-T research. He played a movie about his lab and the amazing advances he was making with the help of Rebecca’s family. He said there was a blessing in Rebecca having A-T because her illness had led to the funding of such important research. I gasped when he spoke those words. As far as I was concerned, there was nothing good about Rebecca’s A-T. No blessing in it.
I felt so sorry for Rebecca and her family. And yes, I felt so blessed and relieved that my own children were perfectly healthy.
I came home that day from the fund-raiser and wrapped my arms around both my kids and squeezed them with so much gratitude for all our blessings.
Two years passed. It was July 2001.