2016-06-30
Excerpted with permission from "Jewish Mothers Tell Their Stories," Haworth Press.

Three is not a number usually associated with the Jewish traditions. It certainly doesn't appear in the Bible as often as seven or forty. But when my daughter Jenny was born, the number three loomed large in my mind's eye, foreseeing a trio of future life-cycle events: a naming, a Bat Mitzvah, and a wedding.

The naming went according to schedule. But other milestones, specifically those having to do with development, were markedly delayed. Jenny was four and yet unable to engage in the prattle typical of children newly able, however simply, to report their impressions of a freshly discovered world. There were other things as well, telltale neurological indicators that hinted at the undeniable fact that all was not well. Even after allowing for the fact that children do not always progress according to predetermined timelines, it was apparent to both my husband and me that Jenny was--different. In fact, we held on to that adjective for a long time after it ceased to be entirely accurate, because it was infinitely easier to accept than that other word that described our daughter, autistic.

Though still not high on the list of well-understood disorders, in the early 1980s, when Jenny was born, autism was an even more esoteric label than it is today. It commonly evoked the image of a spinning child totally out of touch with her or his surroundings. In fact, autism is a syndrome of neurological abnormalities affecting the use of language, ways of relating to others, and sensory perception. The level of impairment varies significantly among those afflicted with the disability.

When the doctors relayed Jenny's diagnosis, my husband and I were devastated. As parents, we grieved for the death of dreams we had nurtured for our daughter. But the more Jenny developed into her own person, the more we saw behaviors symptomatic of autism as simply characteristics of her own unique self.

We rejoiced in the special talents she possessed in abundance. The heightened sensory perception that added to her distractibility had its "up" side as well, that is, the making of an artist of no small magnitude. Her drawing revealed colors so brilliant, it was clear that only someone who could see beyond the spectrum visible to the normal eye could have produced them. As sounds were equally acute to Jenny, music became an important part of her world long before she was able to string three words together. Like many parents of disabled children, I too grappled long and hard with issues of belief. But if ever I doubted the existence of God, living each day with this child, whose very being seemed dependent on the endless creation of beauty, restored my faith.

When Jenny reached the age when a Jewish girl usually prepares to become a Bat Mitzvah, I began to think what would, and would not, be appropriate for her. I would necessarily be making most of the decisions regarding the liturgical and ceremonial aspects of the Bat Mitzvah, as my husband is not Jewish. I knew instinctively that the standard ceremony, a Torah service modified to accommodate Jenny's "deficits," would not do. I sought a service that would highlight her gifts and validate her unique essence.

It seemed to me that the Havdalah service, during which we bid farewell to the Sabbath and welcome the coming week, would be perfect for my daughter. In that ceremony, all five senses are involved: We are delighted by the pungency of fragrant spices, cheered by the taste of sweet wine, warmed by the heat of the flame, inspired by the sound of ancient melodies, and comforted by the sight of family and friends. This service would not only open a window of accessibility through which my daughter could embrace an aspect of Judaism already sanctioned by custom, but with its joyful celebration of the senses through which she lives so intensely, Havdalah would confirm Jenny as she is, a perfect creation of God.

But the rabbi of the synagogue to which I belonged did not share my conviction. Because the Bat Mitzvah ceremony I envisioned did not include a Torah service, I was told it could not be held in the synagogue. I still recall the interview I had with the rabbi, because it brought to the surface a truth I had been trying to hide from myself for years.

I explained why I felt that a Torah service, though typically the focus of the Bar or Bat Mitzvah ceremony, would be inappropriate for my daughter:

"What Jenny knows about Judaism, she knows through her senses, and not through law and intellect. And because a Torah service would have no real meaning for her, it could, perhaps, even be said to trivialize Torah."


After pausing, I continued with words that I had, until that moment, kept locked within the depths of my being:

"Rabbi, it is unlikely that my daughter will ever stand beneath the bridal canopy, or that I will ever attend the baby naming of a grandchild. Jenny is my only child. This will be the only major Jewish life-cycle event she will ever remember. Can it not be one that will be the most meaningful to her--and to those who love her?"

After uttering these words, I was momentarily overwhelmed by a vision of my family tree, the one our tradition enjoins us to nurture so that it will continue to flourish m'dor l'dor, from generation to generation. The branches on my tree were truncated and shriveled, cruelly amputated even before they had had a chance to bloom. I would not dance at my daughter's wedding. Nor would I ever hold a grandbaby in my arms.

But rules prevailed. I could not hold the Bat Mitzvah in the synagogue if I opted to forgo the Torah service.

When I got home, I cried. I wept out of anger, frustration, and self-pity. It was recognition of that last sentiment that dried my tears for good and all. I'd indulged in more than my share of self-pity when my daughter was first diagnosed with autism. Thus, I knew well that beneath the superficial solace it offers its subscribers, self-pity only encourages emotional and psychological paralysis.

And I could not afford immobilization of any sort. I had a job to do. I knew that the Bat Mitzvah service I had in mind was well within the boundaries of tradition. It did not contradict Halacha, Jewish law, but merely challenged the rules of a particular synagogue. A Torah service, though customary, is not mandatory. If I could not bring my daughter to a sanctuary, then I would create a sanctuary for my daughter.

The Havdalah service does not require the presence of a rabbi--it is, after all, usually performed at home. However, because I wanted the event to be as special as possible, I asked a friend and colleague to conduct the service. He agreed without a moment's hesitation, declaring that it would be "an honor."

I had decided to hold the ceremony in a nearby hotel. The room, simple but elegant, was festively adorned with purple, pink, and white flowers. These were Jenny's favorite colors and the ones that represented her well. Pink symbolized her budding womanhood; purple, her passion for art and music; and white, an innocence that can only belong to someone who does not have the capability to deceive.

I had also scattered oranges pierced with cloves and cinnamon sticks throughout the room, on tables, serving trays, and even in planters. The tangy perfume that mimicked the scent of the Havdalah spices filled the air.

When it came time for the ceremony, the rabbi called Jenny to his side. He then called those who were of particular importance in my daughter's life: her parents, grandparents, two half-brothers, and teacher.

Because this was a Havdalah and not a Torah service, Jenny's father and two brothers, who are not Jewish, could be full participants. This proved to be a serendipitous blessing, for the pride that lit my husband's face as he stood close to his daughter almost outshone the glow of the flame atop the braided candle.

The lights were dimmed. The rabbi, also an inspired cantor, began to chant the blessings. The radiance emanating from the Havdalah candle seemed to expand and intensify, creating incandescence around Jenny and those whose lives she touched most deeply.

As the rabbi chanted, Jenny sang with him in Hebrew. She was frightened at first, and her fear was reflected in a brief bout of giggles that disappeared as the singsong of the melodies familiar to her from home worked their magic and calmed her.

Singing, at first timidly and then in a surer, stronger voice, she thanked God who creates the fruit of the vine, then fragrant spices, and the lights of fire. We sipped the wine, inhaled the sweet-smelling condiments, and felt the warmth of the flames that illuminated our gathering.

With the lights still dimmed, everyone locked arms and sang "Eliyahu haNavi," the song about the Prophet Elijah customarily sung during the Havdalah service. According to folkloric tradition, if not biblical testimony, Elijah is renowned for visiting the spiritually pure and virtuous throughout the ages. And, gazing at my daughter's lovely face, luminous with the joy of achievement, and hearing her remark, "Being Jewish smells like oranges and cinnamon," I had no doubt that Elijah had indeed made his way to our self-styled sanctuary. His presence would be a fitting tribute to the sanctity of innocence and my unwavering belief that, differences and disabilities notwithstanding, God simply does not make mistakes.

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