For The Miracles
I wanted to parent my son differently from the approach of some Jewish parents who define Jewish holidays in Christian terms. Hanukkah becomes the “Jewish Christmas” and Purim-a holiday based on the biblical scroll of Esther- masquerades itself as the “Jewish Halloween”. In so doing, we eviscerate our Jewish heritage and effectively say to our children we have no history of our own. Our rich Jewish heritage must be understood on its own terms.
Who knows children better than their parents? I knew that Ben’s experiential learning style was remarkably like mine. We learn best by doing. It isn’t enough to read about the mitzvot, commandments, of Purim. We need to actually do them, to do an act of chesed, kindness, rather than merely talking about it. That’s the lesson I wished to impart to Ben for which I came up with a practical application of “matanot l’evyomim”-giving of gifts to the poor. I knew Ben, a generous and kind person by his very nature, would take to it like a fish to water.
I found all the information I needed in the Purim edition of the Jewish Federation news magazine:. While cutting out what looked to be an easy recipe for hamantaschen , traditional cookies for Purim, I read that Maot Chitim, a Jewish organization that collects food and distributes it to the Jewish needy, was joining forces with The Ark, a Jewish social service agency in Chicago, to provide baskets of holiday food to the Jewish needy. Drivers were needed.
It was Purim day of 1991. Ben and I spent the early part of the morning mixing ingredients into dough for five dozen hamataschen and shaping them into the traditional triangular-shaped treats with a half teaspoon of jam inside each. Sure I could have bought them at the local grocery store, but that was not the message I wanted to send to Ben. Besides, homemade is always better, right? We packaged five per plastic sandwich bag, tied them off with those wire “twisty” things you get with the trash bags and set out for the Ark to receive the addresses and holiday food baskets for our deliveries. By mid-afternoon, we had made deliveries to twelve
needy Jewish families, each one receiving a Purim basket of holiday foods plus one of our baggies of homemade hamentaschen.
Six years later …
I had already signed up with the Ark to make deliveries and, after some cajoling, Ben agreed to accompany me, but only on one condition. He would not bake hamantaschen. At eighteen years of age, he asserted, he was far too old for that sort of “kid stuff”. We had a great experience albeit without homemade hamentaschen and were on the way back to The Ark to drop off copies of our receipts when an alarming pause interrupted our conversation. It had happened many times before when Ben, a diabetic since he was ten years old, would suffer hypoglycemic shock unexpectedly in the course of a conversation. One minute he’d be fine and the next second he’d be writhing in a violent episode of low blood sugar. Looking bewildered and trapped in his body, jerking
spasmodically, from which he could not escape, he turned to me in desperation as if to say: “Dad, I sure hope you know how to deal with this!” Truth be told, I was at a total loss. Whatever it was, it didn’t seem attributable to diabetes because Ben had eaten lunch several minutes before. Terrorized by this new demon that had invaded his body, I reacted as if it were diabetes-related, the only response I knew. I rushed panic-stricken to a nearby fast-food restaurant. “I need a regular cola now,” I shouted to the counter person. “Quick. Please hurry. It’s an emergency.” Hoping, however unrealistically, that it was diabetes, despite all appearances to the contrary, I forced the straw between his lips. Thankfully, he somehow instinctively began to suck on the straw though I wasn’t at all sure it was doing him any good. The powerful, mechanical-like spasms of his body appeared as if a hydraulic pump grinding to a halt almost out of oil. The entire dreadful episode took three minutes to run its course.
We drove home exhausted and bewildered. Ben suffered more of these same episodes that
day. What was happening to him? We waited for several interminable hours for Ben’s doctor to call us back with his referral so that the cost of any treatment would be covered by our insurance. He never did. When we were nearly at our wit’s end, we left for the emergency room without benefit of a referral. The doctors at Weiss Memorial Hospital diagnosed him with epilepsy. Epilepsy! As if diabetes was not enough of a burden! The seizures continued inexorably for several days during which Ben never complained, became despondent or depressed. However, as strong as he was, I am sure the tireless presence of chronic illness did wear him out at times. Living without self-pity and embodying the virtues of self-reliance and courage, Ben was the sort of person to remount his bicycle quickly after he had fallen off, always ready for what tomorrow might bring.
In the spirit of the joy of Purim, I’ve looked for the silver lining of that day when twelve years ago Ben experienced his first epileptic seizure. It may seem paradoxical to some, but what I do know is that Ben’s second chronic disease strengthened his body and spirit even more than had his first diagnosis of juvenile diabetes. He was a young man who -over the course of his too few years -taught us to endure chronic illness with dignity and grace.
Perhaps there had been some hidden significance to his mom and I naming him “Benjamin” because-whether it be to debilitating chronic illnesses or Haman Ha Rasha*-my son, like Mordechai The Benjaminite**, refused to bow down.
*Haman Ha Rasha-Haman the Evil One who sought to exterminate the Jews of Persia as told in the Biblical Scroll of Esther.
**Mordechai The Benjaminite-the heroic uncle of Queen Esther who refused to submit to the evil designs of Haman.
