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A Boy Named Shuki

by: Pessie Busel Novick

This article originally appeared in Moment. Reprinted here with permission.

Yehoshua Abba Chananiah [aka: Shuki], my youngest son, descends from the yellow mini-bus that transports him to and from school, his arms akimbo, his gait awkward, his smile illuminating the world around him. As he runs in my direction I wonder at the good fortune that has visited me in this special child who is a constant source of joy and affection, just as I had – for more years than I care to recall – wondered at what I then perceived as the bitterness of my fate. Why me? How different these words sound now, uttered in a voice so greatly altered – for the better – by eleven years of living with a retarded son.

The term retarded falls harshly upon ears that are accustomed to the euphemisms that inhabit today’s world of political correctness; it seems unfair, unkind, and totally judgmental to employ this antiquated term. And yet, retarded was once the politically correct term for those who had until then been commonly and coarsely referred to as idiots. Those who work closely with the developmentally challenged are well aware that it is not the nomenclature but the reality of a handicapping situation that is painful.

Let me take you back some thirteen years ago, when I was told by the pediatrician that my new son had Down Syndrome. The news altered my life and that of my family forever, in ways that I might never have imagined. The process of acknowledging this reality was lengthy, painful, and uniquely rewarding. I assure you that I am no Pollyanna, and – largely because of the extent to which I am not – the growth that I attained over the next decade was hard-won, and the joy that the experience of raising this very special child – or has he raised me? – came about in spite of the barriers that I consistently set up in my own path. Why me indeed?

When I was growing up, it seemed as though everyone in school had a special talent, a gift for music, or dancing, or art… everyone, that is, except for me. This is not to say that I was inept. In fact, I could do a number of things reasonably well, but in no one area did I have what one might truly call a “gift.” I could carry a tune, but Judy was the musician; I could compose a poem, but Arthur was the real writer. I saw myself as having no special gifts and, therefore, no real identity, except for my ability to do well in school. For this reason, perhaps, I embraced being what the others called “smart” as a vital component of my self image, and I went through a lengthy and particularly obnoxious stage wherein, fortified by massive doses of Ayn Rand, I put down anything I considered unworthy – i.e., anything that I could not understand, accept, or relate to – as “stupid,” a term that I would utter with the scathing derision that characterizes so many adolescent utterances. Even now, after that stage has passed – for the most part, that is – much of the joy that I take from life tends to originate from pursuits that some consider cerebral.

I tell you this not to boast of my “intellectual prowess”; I am no longer foolish enough to consider the ability to earn good grades an indication of general superiority. Moreover, experience has taught me only too well that academic success is a very poor predictor of success in any of the most meaningful areas of life. I mention this aspect of my history only because it explains, or at least helps to explain, why I was hit especially hard when I learned that my new baby, my second son, a sweet – if somewhat tiny and flaccid – baby boy, had Down Syndrome and would never learn the way that my others did.

My husband and I could not bring ourselves to discuss the situation with our other children for several months. Our pain and sorrow were an open wound that would not heal for a number of years. Voluminous journal entries testify loudly to this pain while they subtly delineate, for those gifted with hindsight, the concurrent dissolution of my marriage. Well meaning friends tried to comfort me. I grew weary with their attempts to afford me perspective on suffering by telling me how much worse my situation could be. This was no comfort; one does not live by default, grateful for every tragedy because it was not two or three. Nor was I relieved to think as I was advised to do by one woman – herself the mother of a child with Down Syndrome – that this was “the best possible handicap that you can have.” This same woman, who clearly was not trained in counseling, took it upon herself to visit me in the hospital – where she volunteered in the gift shop – and ask me in her best Amway salesperson voice, “So what do you think?” I believe that my baby was three days old at the time. I looked at her with dull, uncomprehending eyes and spoke as only a hardened cynic can to a woman who, while burdened with a child with special needs finds it in her heart and her schedule to volunteer in a hospital – and said, “I think that I hate everything about this. I think that this entire situation will re-define my notion of misery for the rest of my life.” She looked at me, and for a moment I saw pain flash through her eyes, and she responded in a somewhat more subdued tone of voice, “Yes, well I guess you’re right.”

The distance of time has afforded me the decency to feel shame at having turned away this well-intentioned woman and having possibly created a chink in the armor of optimism that she wore so flamboyantly. In retrospect, I sincerely hope that I did not damage her armor. I realize now, as I could not at the time, that we are all entitled to our coping devices; I had no more right to afflict her with my bitterness than she did to afflict me with her exuberance.

No amount of reading, no amount of talking, no amount of logic could alleviate the pain that I suffered – not for days, or months, but for years. I am not proud of this fact, but feel that I must make the point very clearly nonetheless, so that the reader may better appreciate the end of my story and the fact that even those most confident in their misery may yet derive happiness – in spite of themselves – often from the very situations that had inspired their grief. While Shuki was small, I could not imagine what joy could possibly come from raising “a child like that.” Make no mistake; I had no prior experience with special children. No doubt I would have viewed my situation somewhat differently if I had. In truth, I did not know what to expect, and this uncertainty manifested itself as an ache born of fear, an ache that refused to diminish.

I tried, using every ounce of mental energy at my command, to predict the ultimate outcome of my situation. Never – neither through my most logical thought processing nor through my wildest imaginings – could I have foreseen the delight that comes with seeing life through the eyes of a child like Shuki, experiencing simple pleasures in a new way, finding humor and excitement in the most mundane of situations.

I am constantly amazed to discover that those very aspects of personality that I had always considered functions of intellectual development can exist where intellectual development is absent. For a child who says very few words, Shuki communicates eloquently, using his entire body to express a variety of emotions and desires. His excitement in greeting friends and encountering new experiences is contagious. The pride he takes in his accomplishments – a sweet innocent pride, filled with happiness and totally devoid of arrogance – is a pleasure to behold. One wonders why we go through such lengths to teach our children to temper this joy; one wonders why we “civilize out” of our sons and daughters so many delightful displays of excitement. Shuki gives freely of his love, asking nothing more in return than the approval of those around him. He has a talent for knowing how to please and bring joy to those who are sad. This truly unconventional child is by no means without gifts. Had I known Shuki eleven and a half years ago, perhaps I would have learned more readily how to let go of my own pain.

Like all parents, I take great pride in my children’s accomplishments, and like many Jewish parents, I cherish most their distinction in the academic arena. My two daughters and my older son are only too well aware of this. While I have always been quick to say that our society places far too high a value on intellectual acumen and that a great many other attributes play a far more prominent role in the make-up of a human being, I did not realize how loudly my actions contradicted this professed belief. Perhaps the best illustration comes from an incident that took place when Shuki was about half a year old and his older brother was seven.

Shai was in his baby brother’s room when he asked me, “Mommy, will the baby ever be early for anything?”

I could not really understand what my older son meant. Given my older son’s penchant for tardiness I asked, “You mean like for appointments?” [All right, so forget all that other stuff I said about my being smart].

“No, I mean like how Sarah read when she was three, and I walked early, and Ilana talked early.”

I thought for a minute about how I would respond to this question. I realized at that moment how much value I had placed on my children’s precocity and wondered about the message that my attitude had communicated. I looked into my older son’s eyes and said, “No Honey, he won’t be early for anything. But you know what? He’ll never say anything to hurt people’s feelings and he’ll never make anybody cry.”

Shai was very quiet. His brown eyes clouded and suddenly became bright again. “You know, Mommy,” he told me, with far more wisdom than I had at my command, “that’s really a very good thing. I know a lot of people who are very smart, and they use being smart as a way to be mean.”

Looking back at that incident I realize how very much my family needed Shuki, that his very being affords us a completion that we would have missed sorely. I think of my four children; they are a study in contrasts. For a moment I focus on my two sons, the one so quick to grasp life’s most complicated ideas and the other so quick to grasp its simplest pleasures, dispersing joy indiscriminately to those who are fortunate enough to know him. I ask myself, perhaps for the last time, “Why me? Why my family?”

I don’t know. Just lucky I guess.

 

Pessie Busel Novick

November, 1995