We Are Gathered Page 8

  A horde of girls in yellow dresses swarms in front of me. One turns quickly to the side, and for a moment, I think, There is Caroline. Caroline—I would like to tell you about the damage you caused, though maybe it wasn’t all bad. It helped my son grow up. I still think about you sometimes. She is gone in a flash. And then there is Ida, young again, nuzzling her head into the neck of another man, not me. I blink my eyes. It’s all I can do. Maybe Eddie’s right; I am having another stroke. The first one caught me unaware, but I’ve been waiting for this one, the one that will take me away once and for all. Of course, that girl isn’t Caroline. Caroline would be older if she was here, the same age as the mother of the bride. She would be middle-aged, and if she was still thin, then her face would be narrow, creases at the corners of her eyes, lipstick bleeding into her skin. And that isn’t Ida. Ida is old, approaching ancient, and me, well, I’m dead.

  A woman comes stomping to the altar, pushes the rabbi and the minister aside, and shouts over a walkie-talkie. “Places everyone. It’s time to start the show.”

  The world is big for those who can imagine

  Elizabeth Gottlieb was born four years before Jeffrey. It is hard to believe that that was twenty-eight years ago and that now we are attending her wedding. We’ve known the Gottliebs for years, but we’ve never known them well. Still, twenty-five years or more of superficial knowledge can accumulate to something approaching depth. I’ve seen their children grow up, and they’ve seen mine—well, my two youngest at least—grow up too. What they’ve watched happen with Jeffrey is different. He has grown up more quickly than the others, blooming in seconds like one of those time-lapse flowers in a science movie and then beginning his retreat, folding back into himself, shedding petals and leaves until eventually—Soon! Soon!—he will be nothing more than a bulb, as small as a fist.

  Twenty-four years ago, I gave birth to the most perfect baby boy. He came out without a cry, greeted the world with a smile. The doctor said he was beautiful. A little baby boy with a full head of downy dark hair and blue-black eyes. They gave him to me to hold, and he squinted up at me, his fuzzy wet head and his mouth gaping open like a caught fish, and I thanked God for him. I remembered to thank God, and while the nurses and doctors buzzed around me and said that he was beautiful and healthy and they needed to weigh him and do some tests, I swallowed his head with my hand, and whispered, “Thank you, God,” because I know that everything in this world, every petal on every flower and every feather on every bird and every second of every day, is nothing less than a gift from God.

  My mother and father came the day after Jeffrey was born, and it was the greatest happiness, peering through the shiny glass windows of the nursery to the third crib from the left in the second-to-last row where a black-haired baby was sleeping, his little mushroom of a fist curled up under his chin. No matter what happened later, and what I have endured since then, we had that moment of joy, that moment a gift from God.

  It took us several days to decide what to call him. Before he was born, we had determined that if it was a boy we would name him Isaac Joseph, but when we actually saw the child, that name seemed wrong, too weighty and historical for one little baby, and so, after several days of deliberation, with the bris looming over our heads, when the decision had to be made, we called him Jeffrey Brian Wolf, names that seemed to give him room to grow. In light of subsequent events, I’ve thought a few times that perhaps Isaac was the name he was meant to have, the bewildered child, unaware of what God has asked of him.

  Once we got him home, all his black hair fell out, and a week after the bris, he was as bald as a Chinese monk. I was careful of that little pink head, and Jeffrey had a variety of hats to wear whenever we went outside, broad-brimmed sun hats with his name stitched in that kept the sun from his face and his face from the sun. I was like a superstitious old lady, afraid to let anyone, even the sun, see what a beautiful baby I had. What a naïve hope it is: to expect to keep your child safe. All we really ever have to go on is faith and superstition.

  Jeffrey was bald for six months, but he gained weight and was healthy, even chubby. At eight weeks, he could grasp my fingers in his hand. He loved to use his hands then. When Larry came home from the office, he would dangle a pen in front of the baby, and Jeffrey would grab it and try to tug it away. Larry said that was a sure sign that Jeffrey was destined to be rich. I told him there were more important things in life than money. Jeffrey, I expected, could be anything he wanted to be: a musician, an artist, a rabbi, an astronaut. Larry liked to tease me, and he would answer, “You can get rich doing any of those things except being a rabbi. Try not to mention rabbis to him.” Jeffrey was a talker back then too, gurgles and squeals mostly; he was a happy child, given to express his joy with a skewed-up face and two randomly paddling fists.

  His hair grew in at six months, almost white blond, which was strange since both Larry and I are dark. We expected it to grow darker later, and it has mellowed to an ashen color, but for the first five years of his life, he carried around that colorless hair, as if he had been somewhere and seen something horrible. The superstitious old lady in me has made up stories around that hair. I don’t allow myself to believe them, but I can’t control my mind enough not to wonder. The jealous sun caught a glimpse of my beautiful boy before I had a chance to hide him and first pulled out all of his jet-black hair. Not content with that, she stole him from his crib one night and led him through the darkest parts of the world, forced him to witness and imagine all sorts of horrors, maybe even whispered his fate in his ear or forced him to choose his fate over another tragedy, my death or his father’s death. When he came back, his mind may not have remembered what he had seen, but it was imprinted on his soul, and his hair, when it finally shook itself free and began to grow, couldn’t muster the faith to have color. That story sprang up in my head one day, more like a lost memory than something made-up, and there are things about it, especially the idea that Jeffrey made a bargain, sold his body but not his soul, that make more sense to me than they ought to. It is strange, after all, that while Jeffrey has decayed, crumbled, contracted, and contorted, his father and I have passed through the years with only a few gray hairs and no illnesses greater than worry.

  As for Jeffrey, well, the only word for what has happened to Jeffrey is that he has become. He has lived much longer than anyone expected him to, and though they say sometimes muscular dystrophy affects the mind, it has not affected Jeffrey’s, though at this point he can barely speak. Once in a while, he can squeeze out a few words, and sometimes I can actually understand him, and it is amazing what he is saying. Usually, he is telling me to look up at the stars.

  For Jeffrey’s sixteenth birthday, Larry bought him a powerful telescope. I don’t know how Larry knew to get him that telescope. Jeffrey had never before expressed an interest in astronomy, but he loved the telescope immediately, and he loves it still. He spends hours at it, propped in his wheelchair, his head fallen over to the side. I bring the telescope up to his eye, and he stares at the heavens. When he was sixteen, it was already difficult for most people, even Larry, to understand Jeffrey when he spoke, but I have to admit there was something wonderful about his words in those days. It was like he had become a baby again. I understood everything he said, just as I had when he was two and a half years old and blathering away without the help of Rs and Ss. I was always at his side, translating for Larry or Amelia and Will, his younger sister and brother. We learned about the constellations and the movement of the planets. We had a Farmers’ Almanac to tell us which days were clear, and we strained to see the moons of Jupiter or the rings of Saturn.

  One night, we stayed up late to watch a meteor shower. Amelia and Will wanted to stay up too, but they had school the next day, and I sent them to bed. Larry waited with us for about an hour, but there were no shooting stars during that time, and he got bored and went inside. After a while, he called to me that he was going to sleep, and he clicked off the lights in the living room and the ki
tchen. The house was dark and quiet enough to hear the hum of the refrigerator. There was only the porch light on, and Jeffrey, angling his head up to the eye of the telescope, told me to turn it off. I did, and then it was completely dark except for the night sky and the not-quite-full moon buoyed in the treetops and the pale gray scar of the Milky Way. Jeffrey told me we would not see shooting stars until after midnight. I do not know how he knew that. We sat there silently, and I could swear I heard my children, the two healthy ones, sighing in their beds upstairs. The clock in the hall chimed twelve times. Jeffrey cocked his head and counted out loud with each chime. Then he smiled. He could still smile then, though it was a loose and reckless thing, an avalanche sliding across his face. He let his head fall straight back. It fell heavily and stopped abruptly. There was a cat meowing in the neighborhood somewhere, and Jeffrey said, “Kitty, shh,” as if the stars needed quiet to perform.

  I didn’t see the first meteor. I was busy watching Jeffrey. His neck by then was thin and twisted like a candy cane. He had no shoulders. It was like a children’s drawing where the arms attach straight into the back, more like wings. His hands, of course, were always knotted, but people didn’t know how soft they were, like pillows, his twisted arms and legs too, stuffed with cotton. “I saw one!” he exclaimed when the first meteor fell. His left hand rose an inch from the wheelchair. “Did you see?” he asked. I told him that I had not. “You have to look,” he told me.

  I looked up, but I wasn’t concentrating. I was thinking I should have let Amelia and Will stay up. It would have been nice for them to have something to share with their brother. One time, I overheard Amelia tell a friend that her older brother was a cripple. I thought to correct her, but it was true. What could I tell her to say? Amelia was always direct. The year before Larry bought the telescope, when she was thirteen years old, Amelia came home from school and informed me that she knew Jeffrey was going to die soon. She had looked muscular dystrophy up in the encyclopedia, and it said most people died before the age of twenty. She seemed dispassionate when she said it. Her hair was cut short then, because she didn’t like to comb it. She must have been playing soccer that day, because it was dirty and sweaty and sticking straight up off her forehead. I said, “Honey, only God knows when someone is going to die.”

  “That’s what the book said,” she countered.

  “Books aren’t always right.”

  She decided not to argue with me. She fixed her face into something private and turned away, but since that day, I could not help wondering if she chose not to love Jeffrey as much as she would have if she didn’t know he was going to die.

  “There’s another one,” Jeffrey exclaimed. “Did you see it?”

  “No, honey,” I admitted. Jeffrey’s eyes rolled in his head.

  “You weren’t watching,” he accused.

  I closed my eyes and tried to clear my head, but there were always too many thoughts crowded in my mind. I wondered if I had signed Will’s permission slip for his school field trip. “Stars are much bigger than planets,” Jeffrey said. “Those aren’t stars we’re seeing.” It always seemed like such an exhausting effort for him to talk, but at sixteen, he still liked to lecture me. “Those are meteors,” he said. “Or comets. They’re just pieces of stars.”

  We waited awhile before the next one came, and I saw it. I shouted out even before Jeffrey could make a sound, and I think he was pleased. He really wanted me to see one. It was so fast, and as soon as I started to think about it, I wasn’t sure I had actually seen it, but Jeffrey confirmed the sighting. “That was a big one,” he said. I touched his hair, his mysterious hair that didn’t look like anyone’s in the family. Will and Amelia were both dark, an obvious mix of Larry and me, but sometimes I’m not sure where Jeffrey came from.

  “Are you tired?” I asked him. “Ready for bed?”

  “Let me see another one,” he begged.

  We waited. The next one was a long time coming. The tips of the trees scratched at the sky. It was October, and the backyard was brimming with leaves, all sifted together. There wasn’t much of a wind, but when it blew, you could hear the leaves lift and fall, sigh. I switched my eyes from the sky to Jeffrey, and I said, “Isn’t God amazing, Jeffrey?”

  He didn’t answer me. A few minutes later, he shouted, “There’s another one! Another one. Did you see it?” He laughed.

  Just before I put him to bed that night, he told me that when he grew up he wanted to be an astronaut. I don’t know how much Jeffrey believed in his own dreams. I never discouraged him, but I also tried not to encourage him too much. I did not ask him why he wanted to be an astronaut, as I’m sure I would have asked Amelia or Will. He told me anyway. “Astronauts don’t have to know how to walk,” he said. “They float.”

  We took Jeffrey to muscular dystrophy camp one year. I was reluctant at first, but Larry thought it would be good for him, and for us. Since Jeffrey was born, I had not spent one day away from him. Larry worked it out and made all the arrangements. He timed the week so that Amelia and Will would also be away at camp, and Larry and I intended to take our first vacation alone since the children were born. As it turned out, Elizabeth Gottlieb was Jeffrey’s counselor. She was seventeen, and he was thirteen. She was growing, and he was shrinking. The day we dropped him off was hot and fiercely sunny, with threads of ocean wind in the air. Elizabeth had requested Jeffrey as one of her campers, and she had decorated his bed with streamers and Tootsie Rolls. Carla Lefkowitz was there too, poor thing, always trailing next to Elizabeth, trying to hide her birthmark. I should have told her, Be happy it’s just a birthmark; look at how much worse things can be. The two of them stood in front of the cabin, shaded by pine trees, Elizabeth with her hands on her hips, nodding intently as Larry rattled off the minutiae of Jeffrey’s care, and Carla looking embarrassed. At home, I am the one who attends to Jeffrey’s whims, and I am the one who keeps a careful catalogue of his idiosyncrasies, but when we go out in public, Larry takes over. I am perfectly capable of maneuvering Jeffrey in his wheelchair. I bathe him every day by myself, locking his arms in the straps we’ve installed in the bathtub and lifting him out, as slippery as a fish, my hands under his arms and my feet braced against the toilet and the sink. When he was a baby, with no idea of his impending doom, I would linger over his bath, run the warm water through my fingers, caress the velvety softness of his brand-new skin, sneak my fingers under his chin and around the back of his round head. After he got sick, but when he was still small, bathing wasn’t so difficult. He slowly lost his ability to get in and out of things—chairs, beds, bathtubs—but as he weakened, I couldn’t leave him alone for fear the day would come without my knowing it when he would sink under the soapy water of the tub and be unable to lift himself out. I bathed him with his brother for years until Will started to complain that Jeffrey was too big. When he lay down in the tub, he took up all the space, and Will switched to showers. Now, if I am too tired to think about bathing him, I can strap him into a chair and shower him off, but, of course, I get wet too. We make such a funny couple, me in a bathing suit and Jeffrey under the artificial rain, his hair sudsy; me kneeling at his feet to clean between his toes and, as quickly as I can, his buttocks, between his legs where now he has hair, and in that small section of his body that looks like an adult even though the rest of him is a shrunken man—strange and mythical, grotesque even, I will grant you—or an overgrown twisted version of a boy, also grotesque to those who have never seen a child with muscular dystrophy.

  Larry did not want Elizabeth and Carla taking care of Jeffrey. When I told him she would be at the camp and had requested to help care for Jeffrey, he rolled his eyes and asked rhetorically, “Is that appropriate?” I did not see the problem at first. Elizabeth’s father, Josh, and Carla’s father, Marty, and Larry had been college roommates. Josh and Larry weren’t terribly close. I don’t know what we would have done without Marty’s help—everyone needs a doctor for a close friend—though his skill set did not transla
te to his daughter, who was just a kid, and Carla had never shown any interest in Jeffrey before, though she saw us often at synagogue. Elizabeth, on the other hand, always made a point of stopping by and trying to talk to Jeffrey, albeit in too loud of a voice despite the many times I have told her that his hearing is unaffected by his muscular dystrophy. I didn’t see any reason why they shouldn’t care for Jeffrey. In fact, it seemed better to have him assigned to someone who already knew him, even if only superficially. I told Larry I thought it would be nice for Jeffrey. He had known Elizabeth since he was a child; he used to go to her birthday parties—before and after he got sick—and he always seemed to like her. I asked Larry what the matter was. He just frowned and said he did not think Elizabeth and Carla were old enough to be taking care of Jeffrey. He reminded me that Jeffrey was a boy, and Elizabeth or Carla might have to bathe him or change his clothes.

  “I am sure they’ll leave that to the nurses,” I said. “Besides, I don’t think there’s a risk of one of them falling in love with him.”

  He seemed shocked to hear me say that and turned away.

  Larry would never admit it, but I know he is a little ashamed of Jeffrey. It is a combination of emotions: shame, sorrow, self-pity, and bitterness. There have been times when I have seen him looking at other people’s families, and I know he is thinking, Why me? Josh Gottlieb never seemed to have anything go wrong in his life: three healthy children, all college bound. I realized as he turned away that this shame was the reason he did not want Elizabeth taking care of Jeffrey, reporting back to her parents the details of his limitations. Carla wouldn’t have anything to report. Her father often came to the house to help us when things happened late at night, a clogged catheter, a slight fever. But Josh Gottlieb and Larry were colleagues, even competitors, and Larry always kept score. It was better, in his mind, for Josh Gottlieb to have only a vague idea of what we went through. For his colleague to know the full extent of our struggle was to Larry somehow humiliating. I have never looked at it that way. We are neither heroic nor condemned. We are just playing the role that God wants us to play. There is no need to sugarcoat it. God’s world, including Jeffrey, especially Jeffrey, is beautiful exactly the way it is.