by Linda Janower
(Contact AKBTC)

A moving story of the anguish of one grandparent and how one clergy leader stepped forward to help, even knowing that all of his congregants have special causes. Once you read this, only you can decide whether to ask your religious leader for help, by sharing this article with the head of your congregation.

My four-year-old granddaughter has a brain tumor called JPA. Usually the conversation stops here because there is no known cause or cure; the disease is pernicious and the treatments, which I am so grateful for, are difficult at best. Research is critically underfunded. I know I have to overcome my reluctance to ask for help, as research is our best hope. And I know I cannot do it alone.

I am determined to leave no stone unturned. But what can one grandmother do? After I contacted my friends, I decided to swallow my pride and go door to door, putting an invitation in mailboxes asking neighbors to sponsor my bike ride for research. As I walked block to block, my hip was aching. When I couldn’t walk any further, I sat down at the side of the street, and cried my heart out. I was angry at myself; I had not done enough to repair the world, tikkun olum the bible teaches. My fundraising attempts were feeble and clumsy. My body and brain were both burned out. I was emotionally exhausted, and I had lost hope.

A horn honked and the sound jarred me. I looked down at my cell phone and called my rabbi. He told me to come to see him immediately. And after he listened, he handed me a box of tissues and told me that he was going to ride his bike with the family. Then he excused himself and said he wanted to get to “yes” on some other possibilities, (and I suppose he called the President, or whomever Rabbis call when issues come up). When he returned he was beaming, and told me what he could do. And when I reminded him that if he did this for one congregant, he would have to do it for all, he said “So be it; don’t worry, Linda, I will handle it”. There is no ceiling on compassion”, he reassured me. ” If our temple cannot support you now, I don’t know what we are here for.”

Thursday afternoon at 3 o clock, 3 days before the event, an email went out to 900 temple members about the ride, with a personal invitation in my name to join the ride. Only l0 riders heard about it in time. But the checks came in afterwards (made out to the tax deductible organization, and sent to me at home, so I could send them in as a team). More importantly, many of them came with beautiful, reassuring notes and prayers. There was a critical care volunteer nurse who offered to spend time with my granddaughter if she required another hospitalization. There was a woman whose daughter had 3 brain surgeries and reassured me that she is well and flourishing. There was a Hebrew school friend of my sons, now with his own family, who wanted to ride and support him. There was a woman who knew firsthand the helpless feeling of facing a serious health challenge for our grandchild, and a couple who wrote that our road was long and painful but we took comfort in knowing that we had done our best for our son. There was a woman who wrote to me that she held my hand in friendship, even though we were separated by 3,000 miles. And there was a man who actually thanked me for asking him to sponsor me in the ride, and offered to pray for your grandchild continuously until she is well. And, of course, there was a music teacher who related a quote from Isaiah, which I look at daily on my kitchen bulletin board: “No weapons formed against me shall prosper”.

If you would like to help parents in their quest to protect their child with JPA, please Make a Donation The rabbi put my letter into the Shabbat bulletin for the Saturday before the ride, and had it placed on everyone’s seat; he asked me to stand so others could find me during the kiddush refreshments. He rode his bike 25 miles side by side with congregants and our family as part of what he called Temples Team for brain tumor research. We raised about $2,500 but the amount of money did not make the difference. His leadership position did, because it made me feel part of a bigger sensitive, compassionate and embracing congregation. And when he was finished he said: What else can I do for you, Linda? And for the first time, the tremendous weight I was carrying on my shoulders was lifted. I know I am not alone. I believe in a community that reaches out to support each other. I believe together we can make changes, and now I know what hope means.