I had just finished a long day of teaching. First, my regular day job working with profoundly mentally handicapped teens, and then teaching an evening grad research course at Florida International University. It was a beautiful night; driving with the top down on the car, it wasn’t too hard to count life’s small blessings. But as I turned the corner of my street in Miami, my world came crashing down. There, in front of my home, were about a half dozen police and EMS vehicles. My worst nightmare – very parent’s worst nightmare, had come true. An officer leaned into my car and put a hand gently on my arm. “I’m sorry,” he said quietly, “about Devorah’s passing.”
No! my mind screamed. It can’t be! Please G-d, don’t let it be so. I was too shocked to reply, and, quite frankly, I don’t remember too well what happened in the next few hours and days. Even now, weeks later, it just all seems like a dark, cloudy dream. How could it be so? I argued with Hashem – she was only 25 years old, just beginning to put her dreams into play. It simply can’t be so.
Devorah Leah was born on the last day of Chanukah, truly a time when a dark world is desperate for the full light of that eighth day. As a young girl, with her long dark curls, many started calling her Shirley Temple. She was named after the famous Rebbetzin Devorah Leah who actually gave up her life so the Alter Rebbe, known as the Baal HaTanya or simply the Rav, would live and continue to spread the inner teachings of chassidus to the world. Our Devorah Leah also demonstrated this remarkable quality of mesirat nefesh, of putting one’s self aside to help others.
But I’m getting ahead of myself. First, for whatever reasons known only to Hashem, she had to face some serious challenges.
At around the age of eight and a half, she started getting seizures. Things got progressively worse, and over the next several years there were more times than I can remember when we rushed to the emergency room in the middle of the night in the back of a ambulance.
Devo, as we liked to call her, went from one medication to another. Some made her totally lethargic, more asleep than awake. Another caused her to break out into a rash. For a while we had to get her meds from Europe and Canada, as that particular one wasn’t yet approved by the FDA. Of course they weren’t covered by her health insurance and cost a small fortune each month. But, alas, they didn’t stop her seizures.
Her educational experience was up and down, as she bounced from one school to another. In some places she simply fell too far behind. Other schools just didn’t understand or accept her ‘partial-complex,’ or mini-seizure activity, when she might suddenly experience feelings of fright, or stare blankly into space.
This continued until she was about 16, when, after a series of tests, the neurologist informed us that she was a ‘good candidate for brain surgery.’
I was totally beside myself. My daughter undergoing such a potentially threatening procedure? No way, I answered. But Devo faced it all with remarkable courage and simply told me, “Ta, I want a chance for a normal life. I can’t live this way! I’ll ask the Rebbe.”