November 1, 2000
The Celebration

The Celebration
by
Lisha Goldberg

"You're wearing a hole in the kitchen floor," my mother observed.

"I can't help it," I answered. "What's going to happen?"

"Don't think about it," my mother suggested. "And please stop pacing. You might bump into the iron. Why don't you go upstairs and finish your homework?"

"I'm not pacing," I paced. I whirled around to face her. "Mom, how can David have a Bar Mitzvah? How can he not have a Bar Mitzvah? You're not a man without a Bar Mitzvah, but he can't have one! Can he?"

Mom expertly folded the freshly pressed shirt. "What would your father tell you?" she asked.

"Things always have a way of working themselves out," I responded dutifully. "But how..."

"Don't worry so much," my mother soothed me. "Your father promised to talk to the rabbi before he comes home for dinner."

"He did? Hooray for Daddy!"

Before my mother could respond, I bolted out of the kitchen, charged up the steps, and exploded into David's bedroom. My older brother didn't flinch. "Dad's going to talk to the rabbi about your Bar Mitzvah," I panted. "Don't worry, Dad always says that the rabbi has a special 'in' with the big guy upstairs."

David calmly blinked at me. I babbled on.

"Maybe it's a good thing that we won't be having a big celebration. You won't have to wear a suit, and I won't have to buy a new dress. You know how much I can't stand trying on new clothes!"

David neither agreed nor disagreed. I continued my rapid-fire monologue. "You know what's really great? You won't have to sit through a long ceremony, or be nervous about reading the Torah in front of hundreds of people, and you won't have to write a long, boring speech."

Suddenly, my big brother winked, but I knew that he meant nothing by it. A doctor had made a mistake during David's birth. Consequently, my brother had a mild but permanent facial tic. I ignored the twitch and continued to describe a Bar Mitzvah from my eleven-year-old perspective.

"After the ceremony, there's a big luncheon. They always sit me at the children's table. Even if I want to sit with Mom and Dad, I still have to sit with the cousins. And you know what those cousins do? They take the biggest water glass they can find and stuff it full of food. Then they pass it around and dare everyone to drink out of it. Doesn't that sound gross?"

I made the most terrible face I could, but David simply blinked. Undaunted, I continued my story. "You know what I really don't like? I don't like when all these people I've never seen before come up and pinch me on the cheeks and tell me that they knew me as a baby! I just want to scream! Then they ask what kind of a boy do I want to marry and what do I want to be when I grow up. I don't care about boys! I tell them I want to be a rock star. You know what? Some of the old ladies cry when I tell them that! But it's the truth!"

I waited for David to react, but of course, he did nothing. I didn't really expect him to say or do anything. The pause was more for my benefit than his. I needed to calm down and stop thinking about getting my cheeks tweaked.

"Some parts of the Bar Mitzvah are fun. I like when the band plays the Alley Cat 'cause I know all the steps. And I like when all the cousins sneak away from the adults and play "hockey" with the caps from the soda bottles."

Again, I stopped and regarded my brother. David had never attended a Bar Mitzvah, had never sat inside a synagogue, and had never gone to Hebrew school or even regular school. For that matter, neither did our youngest sister, Amy. Both my older and my younger siblings suffered from Canavan's disease, a rare genetic disorder that impaired physical and mental development. There is no cure or treatment, and the disease is always fatal.

Neither my brother nor my sister ever learned to walk or talk. As they aged, their muscles gradually weakened, and their limbs became inflexible. Eventually, they lost their vision and their ability to swallow. But miraculously, the disease never affected their hearing. Six-year-old Amy cooed and slowly stretched her arms out whenever she heard a familiar voice. Silly sounds gave her the giggles, and loud, unexpected noises caused her to laugh until she had to gasp for air. However, the moment Amy heard a stranger's voice, she became rigid and retreated within herself.

As a little boy, David too, loved to laugh, and he enjoyed all kinds of sounds. But by the time he had reached his ninth birthday, the disease had robbed him of this ability. At least, that's what my parents and I thought. One day, when David was twelve, a deep, hearty laugh suddenly boomed throughout the house. Startled, Mom, Dad, and I ran into David's room. We expected to see a stranger, or even a friend with a weird sense of humor. Instead, we found David chuckling to himself. Awestruck, we simply watched him.

"His voice is deeper than your father's!" my mother exclaimed. "And he's louder, too!" she added. I wondered how that was possible when David had such a tiny, weak body.

"What's so funny, David?" I asked after my brother had quieted down. David didn't answer, but Mom had an idea. "I think that an angel whispered in his ear."

I looked carefully, but I didn't see any angels in the room. Still, I believed my mother. What child was more deserving of a heavenly visit than one who faced death everyday, and never complained?

Thirty years ago, during David and Amy’s lifetime, doctors told us that children with Canavan's disease always died somewhere between three and six years of age. When David was diagnosed, family, friends, and doctors advised and even begged my parents to "put it away." The "it" referred to my brother, and "away" meant that we should forget about him. The people who gave us these suggestions did not intend to hurt us. They were concerned that a child like David would confine my parents' activities and cause problems for a "normal" child like me.

David certainly affected me, but not in ways that anyone could imagine. My mother told me that when I was four, I would approach handicapped strangers. "You're lucky you can walk," I would tell them. "I have a brother at home who will never get out of bed."

I was six years old when I learned that my younger sister also had Canavan's disease. Although I didn't want her to be sick, I was proud to have her as a sibling. "I know why G-d sent you Amy," I told my parents. "It's because you did such a wonderful job taking care of David."

Mom invented her own formula for feeding my siblings. Dad learned so much about medical equipment that he was often mistaken for a doctor. And as for me, I treated my siblings as siblings. I spoke to David as if he understood everything I said, and I always tucked a doll under Amy's arm and included her in my games. I also prayed for my brother and sister. I attended a Hebrew School where prayer was part of our daily routine. Whenever we asked God to send a speedy recovery to the sick, I would whisper the names of David and Amy.

The combination of faith, love, and good care worked miracles for our family. As David's thirteenth birthday approached, doctors told us that David was the world’s oldest survivor with Canavan's disease. Six-year-old Amy was the second oldest.

Sometimes it gave me the chills to think that I lived with two children who defied the odds. I believed that their continued existence proved that God existed, and that He took a special interest in my siblings.

But most of the time, I just went about my business being the middle sister. That meant giving David an earful of whatever happened to be on my mind. Today's agenda, of course, was the Bar Mitzvah. Fortunately for David, the doorbell interrupted my lecture.

"Dad's home!" I shrieked. I flew down the stairs and dragged my poor father into the kitchen for a family conference. "Let me take my coat off first," he laughed.

I danced around him until he was ready to speak. "I've got good news," Dad smiled, "The rabbi says that David will automatically become a man on his thirteenth birthday. He doesn't need to have a Bar Mitzvah ceremony - that's just a way of announcing to the community that a boy is eligible to perform certain prayers."

Mom laughed, and I cheered.

"Can't we do something special anyway?" I asked my parents.

"I'm glad you said that," my father beamed.

A few days before my brother’s thirteenth birthday, my father took me to the synagogue gift shop. There, we purchased a beautiful white tallis, a prayer shawl, with powder blue trim, and a white yarmulke. Both were made in Israel. Dad also bought a small bottle of sacramental wine.

"Is this for a Bar Mitzvah?" the man at the gift shop asked.

"Yes, it's for my son," my father answered.

"Such a lucky boy," said the man.

"He's very special," Dad replied. We left quickly, so that the man wouldn't see us blink away the tears.

On the morning of David’s thirteenth birthday, my mother gave him his first splash of Dad’s favorite cologne. Somehow on this chilly November day, she had found a single red rose. She put it on the nightstand next to my brother’s bed.

When it was time for the Bar Mitzvah ceremony, Mom carried Amy into David's room, and placed her at the foot of David's bed. I helped my father dress David in the tallis and yarmulke. Dad said a blessing over the wine and we all had a sip, even David, who rarely took anything by mouth. We kissed David, and we wished him a happy birthday and a mazel tov, congratulations, on his Bar Mitzvah. Dad took pictures of David in his new garments.

I used to think that participating in a typical Bar Mitzvah ceremony was the bravest and the holiest thing that any Jewish child could do. The idea of standing in front of all those people and leading them in prayer terrified me. What if you made a mistake? Would the rabbi yell? Would your family get embarrassed? Would God forgive you? I believed that the Bar Mitzvah ceremony was like a test. If you did okay, then you passed and became an adult.

David's Bar Mitzvah changed my whole way of thinking. No ceremony in the world could have turned my brother into an adult. David had achieved manhood on his own terms.

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