We Are Gathered Page 10

  “Yes,” he said. “And birds and airplanes.” Buds and eplins.

  “What color are the birds?” I asked.

  “All different colors,” he said. “Yellow and blue and red. And the airplanes are green.” The next time I took him out in the stroller, to my amazement, he asked, “Are we going to fly again?” All mothers think their children are special, but Jeffrey was extraordinary. I knew he was going to surprise me.

  He was in kindergarten the year he was diagnosed. His pediatrician, very astute, saw the signs before I could. Most children with muscular dystrophy are not diagnosed until they are around seven or eight, and I sometimes wish we had had those extra few years of ignorance, but I suppose it was important to find out. I was five months pregnant with Will at the time, and the doctor advised me there was a fifty-fifty chance that if I was carrying a boy he would also have MD. We had to go and have a dozen tests at the university hospital: sonogram, amniocentesis. I didn’t want to have any tests done. I did not see the point. I was not going to abort the child. There was nothing I could do if he had the disease but bear him and raise him as best I could. We are compulsive gatherers of knowledge even though there is very little in this world that actually enlightens. I told the doctor the tests were useless, but he insisted that it was important to know, and Larry wanted to know. He really, really wanted to know. It puzzled and disturbed me. I remember asking him what difference it would make. “We won’t abort,” I told him. “You wouldn’t want me to abort, would you?”

  He never answered me. The tests came back negative. Will was born with dark hair that never fell out, and he plays tennis on the university team. His father says his serve is close to professional.

  The whole time I was having the tests, I was worried about Jeffrey. I asked every doctor I met to explain muscular dystrophy to me. I was hoping one of them would say something different, but it was all the same: deterioration and death. “Isn’t there anything anyone can do?” I asked. No. One nurse told me, “If I had a little boy with muscular dystrophy, I would pray to Jesus to take him quickly.”

  When I got home from the hospital, I would gather Jeffrey into my arms, lift him from the ground, and press him tightly. His legs swung behind him like rope. He laced his hands behind my neck and laughed. He thought we were playing. When I put him down, though, he often fell. He would seem a million miles from me then, as if I were gazing down at him from some high cliffs and he was on the rocks. I couldn’t bear to watch him struggle to stand up even though the doctor said it was best to let him learn to cope. That way he would be independent for longer. Independent? He was five years old. I would bend down and gently help him stand up. His hand pressed into my shoulder, as small as a seashell. He would balance against me, and at first, until he was seven at least, I would let him go and he would usually stay standing. He held his hands out to the side as if he were walking on a tightrope.

  That first year of knowing was a strange and sleepless time. Amelia was two and full of energy, crashing through doors and making constant demands. I had told her to be careful with her older brother and not knock him down, but she was two, and she did not listen to anything I said. She could not understand why Jeffrey was so slow. He had always played with her from the time she was a baby, wanting to hold the bottle for her and push her in the stroller and feed her. I did crazy things at night when I couldn’t sleep. I calculated the number of seconds I had left with Jeffrey if he died at twenty. Countless nights, I sat up and watched him sleep. I saw omens—good and bad—everywhere. Jeffrey dropped a glass, but it did not break. That was a good sign. Amelia had inherited his Fisher-Price barn. She snapped it in two one day so it would never close again. That was a bad sign. Jeffrey’s condition was stable, but I knew what to look for now, so I was constantly reminded of his death sentence when his knees buckled, when his hand reached for mine and missed, whenever he talked in his funny voice, which I once found so adorable, and I watched his tongue flounder in his mouth.

  Larry was unpredictable. Sometimes he wept. I found him in our room one night staring at a picture of Jeffrey while the tears fell. Other times he was sarcastic. He lost his temper easily. We didn’t fight. I am not a fighter, and when Larry tried to take out his frustration on me, I recognized it for what it was, and he stormed unopposed. Dinners landed on the floor. I still remember the way the blood of an undercooked steak looked against the white linoleum, and I know that jars of mustard shatter easily when thrown. Jeffrey and Amelia were unfamiliar with their father’s rages. Larry had a temper at work, where he was a demanding boss, but he tried not to bring any of those frustrations home with him. Something in the desperation of knowing his child was dying made Larry, for a while, unable to control himself. Things settled down when Will was born. Larry doted on the new baby we knew was safe. He’d been dipped, like Achilles, in the waters.

  When we arrived at the wedding this morning, Larry drove straight up to the house to drop us off. We have a van especially adapted to Jeffrey’s needs, with a platform that rises and descends at the press of a button. That way, I can take Jeffrey with me if I have to go somewhere, and I don’t have to worry about getting him in and out of his wheelchair. He is too heavy for me now, not because he has grown but because I have aged. I am not as strong as I used to be, and while I can handle bathing and dressing him, I don’t have the strength and coordination to carry him up and down stairs or in and out of cars. Larry still carries him, and it always looks odd to me when he does, a sad caricature of romance, Jeffrey’s frail body in Larry’s arms. Larry started to lift Jeffrey out of the wheelchair when we got to the wedding. I reminded him that it was not necessary, and he hovered uselessly for a minute, and then said, “Oh, right. I forgot.” I showed him where the button was, and I positioned Jeffrey’s wheelchair on the ramp. Guests were arriving, pretending not to look at us, but the contraption makes a lot of noise, and I caught their sideways glances. Jeffrey’s eyes immediately focused on the big bouquets of yellow and white tulips. He likes flowers, and in the spring, I take him to the botanical gardens, and we walk among the rows of azaleas and cherry trees. If there’s no one else around—and there usually isn’t on weekday mornings—I pick flowers and rub them one by one against his cheek. They feel different, each one. This is something that Jeffrey and I discovered when he was nine years old. Rose petals are sturdy, and azaleas are as thin as cobwebs, and tulips are cool and stiff, like glass. No one but Jeffrey has ever appreciated these things with me. Amelia is too tough for flowers, and Will’s a boy, and Larry just thinks of them as something useful to prove he remembers our anniversary.

  Larry asked me if I would be all right while he went to park the car. I assured him I’d be fine. I wanted to bring Jeffrey over closer to the tulips. I watched Larry back down the driveway. The van is cumbersome, but he maneuvers it well, better than I do. Someone called my name, and I turned to see Rita Lefkowitz, Marty’s widow. She has all her children but not her husband. Who is worse off ? I hadn’t seen her since Marty’s funeral, and I wondered if she’d be shocked by Jeffrey’s decline. If she was, she hid it well. She didn’t blink an eye when she declared, “How wonderful that you brought Jeffrey!” I was trying to remember the names of her sons, but I drew a blank. Her daughter came up behind her, looking uncomfortable in her flouncy dress. The dark purple birthmark still covered half her face, and I see medical science hasn’t fixed that either. She was scowling as she approached, but then she smiled genuinely at me and Jeffrey, and said, “Hi, Jeffrey.” To her mother, she groaned, “I cannot bear to have another picture taken.” Rita whispered something to her, and she stomped away.

  “You look wonderful,” Rita told me.

  “So do you,” I said. “How nice to see Carla here.”

  “She’s a bridesmaid, but the boys couldn’t make it. Eric is in Chicago, expecting his first baby, and Bill just got back from climbing Mount Kilimanjaro.” She tried to stop herself before she finished the sentence. People always do that, as if I have f
orgotten all the things that my child cannot do and they are the first ones to remind me. Maybe they would feel better if they knew that I haven’t forgotten. I haven’t forgotten for a moment, but I am no more bitter that Jeffrey cannot walk than I am that I cannot fly. He can do what he can do, and if the list does not grow longer, it grows wider. He can’t jump or run or climb, but he can think, he can blink, he can nod his head a dozen different ways.

  “How is Larry?” she asked me, and I told her he was fine. “And the other children?” I told her they were fine and didn’t go into details. She obviously didn’t remember their names, and I only remembered Carla because of the birthmark. Extremes, both good and bad, imprint in memory. People always remember Jeffrey’s name, from random people at the synagogue to the man behind the deli counter. I excused myself and took Jeffrey over to the flowers.

  I know that people think I’ve given up a lot to care for Jeffrey. Annette Gottlieb is involved at the synagogue and plays tennis and golf. They travel with their children all over the world, some as far as China. Other friends of mine have had careers. They’ve gone back to school; one even became a doctor. They’ve had affairs; they’ve remodeled their houses more than once. With the money we have spent caring for Jeffrey, we could have circled the globe, bought a beach house, added another level to the house. Larry and I traveled before Jeffrey was born. We went to Italy and France once, Israel and Egypt, and Mexico. I’ve seen beaches and pyramids and temples and castles. They impressed me, I suppose, but they don’t call to me, and I have trouble understanding what it is about travel that is so exciting to people. I don’t need more reminders of what I do not know and cannot understand. The past—the kings who died and the wars fought for reasons we no longer know or comprehend—saddens me. I’m too superstitious, and my faith is precarious. It requires a special balance for me to feel that there is a purpose in life, and when I see all those empty castles, those dungeons where people suffered, unrelieved, and I arrive two hundred years too late, it upsets the balance, and I start to feel that things are futile after all, eternally repeated in pain and anguish. That is what I feel when I travel. I never feel that at home. I never feel that with Jeffrey.

  I wish I could say that Larry feels the same way. My husband is fifty-nine years old. His hair is gray on the sides and thinning on top, and he has to wear reading glasses. He is still athletic. When we met in college, he was a swimmer, with a swimmer’s broad shoulders that narrowed to his waist like an inverted triangle. In high school, he had been the star quarterback. He doesn’t swim anymore, but he runs and he plays tennis and golf. When Will comes home, they might throw a football or even go to the batting cages, but Will doesn’t come home very often. When we first moved into the house where we live, Larry asked if it was possible to build a swimming pool. He had a civil engineer assess the prospect, and we were told that the groundwater was too close to the surface for a pool. We almost didn’t buy the house, but then Larry decided we’d buy it, live in it for a few years, and then move to a house with a pool, maybe even a tennis court. He was ambitious, and he had a right to be. He knew he would inherit his father’s real estate business, but that was not enough. He was driven to succeed, got an MBA at night to add to his law degree, and he doubled the size of their holdings. He has done well. We sent Amelia and Will to private school, to Europe one summer each, and on trips to the Grand Canyon, but we were never able to move. Jeffrey’s expenses are too high, and Larry is always worried about what will happen to him if anything happens to either of us. He doesn’t want Amelia and Will to have to take care of him. We’ve never actually discussed this with them, but there are provisions in our wills, even a letter Larry wrote to them telling them to live their lives. I don’t worry about this the way he does. I am certain Jeffrey will die before we do. In fact, I know he is going to die soon. There’s very little left of him, and God won’t make him suffer. Maybe then we’ll move, spend all that money we’ve set aside for Jeffrey, and Larry can finally have a swimming pool. He’s only fifty-nine; he’d have at least twenty more years to breaststroke.

  What will I do when Jeffrey dies? I cannot remember if there were plans I once had. Jeffrey’s been my job for twenty-four years. When he dies, I suppose I will just retire. I’ll put on a pink warm-up suit and walk around the neighborhood like the older women do. I’ll bake cookies; I’ll wait for grandchildren. My important work will be over.

  Larry is sweating a little when he finally finds us in the courtyard. He had to park almost a mile away, down at the bottom of a steep hill. Most of the guests have arrived, and I tell Larry we should find a place to sit down since we will need an aisle seat. People scatter for us when they see the wheelchair coming. We are among the first people in place. There’s a row of older people in the back, fanning themselves and trying to stay awake. In the front row, I see an old man in a wheelchair; his wife sits vacantly beside him. It must be Josh’s father, who I heard had a stroke a year ago. I tell myself it is worse for him because he has suddenly lost a freedom he has known for dec-ades. He knows what he is missing, but somehow it makes my heart ache that my boy resembles that old man more than he resembles the young ushers in their gray morning coats and the nervous bridegroom whom I caught a glimpse of, posing for pictures with his mother and father. I could not love Jeffrey more, but I would be lying if I said I didn’t wish sometimes that he was just a normal child and could do the things that normal children do. Roller-skate, sing, kiss a girl, and get married. I feel sorry for Jeffrey sometimes, but I honestly believe that Jeffrey has never for a moment felt sorry for himself.

  People fill in the seats around us. Sometimes I have to wipe Jeffrey’s mouth or position his hand in his lap. Larry greets old business associates. He’s busy shaking hands, and I smile at familiar faces. Annette finds us and asks if everything is all right. I tell her that we are fine, and I see that the next stop she makes is to the old man in the wheelchair. It is both hours and seconds while the seats fill up around us and the bridesmaids, young girls all, arms linked with young men, process past us. When the bridal music strikes, everyone stands up. I have to move Jeffrey’s head so he can see Elizabeth coming down the aisle. “That’s Elizabeth,” I whisper to him. “Isn’t she beautiful?” I wonder what Jeffrey thinks about all this life around him. He cannot tell me anymore. We communicate on faith. I think he thinks she is beautiful. I think he has forgiven her for dropping him. Actually, I think he was never angry. It was I who had to forgive. As she walks slowly, smiling and accepting all the love and admiration and good wishes that you can almost feel soaking her, warming her, scampering in front of her, and paving the way into a bright and painless future, I feel my anger toward her dissolve. Good for her. Lucky her. God chose this path for her and another for my son.

  When we got Jeffrey home from muscular dystrophy camp, I had to tend to all the places he was hurt. In addition to the bruises on his eyes, his hands and arms were scraped. There were swollen red bumps on his legs from some kind of bug that had been allowed to feast on my child, a cut on his finger, a bruise on his back as if someone had hit him. I did everything I could to make him heal more quickly. I held warm washcloths to his face, and when that did not work, I switched to ice. I administered to his wounds with salves and soaps and bandages. Larry said it would get better in time, but meanwhile, neither of us could bear to look at him. It was too painful, those pale eyes framed by bruises. Jeffrey endured the attention. Once, a piece of ice fell from the washcloth, and I did not notice it until it was half melted in his lap. He didn’t say anything. He didn’t even point it out to me.

  Larry allowed me to hover for a month, and then he decided that it was enough. He wanted to go out and see a movie. There was a nurse who would come and take care of Jeffrey. She was very good, and I trusted her. Larry called her, and he made the arrangements and presented the plan to me. My first impulse was to resist, but I saw that Larry was set on going, so I nodded and tried to smile. We were going to take Amelia and Will to see th
e new Star Wars movie. They were the only children in their school who had not yet seen it. I would have liked to have taken Jeffrey too. He was the one who loved space so much, but before I could suggest it, Larry let me know that it was out of the question. He said, “I’d like a simple evening. I’d like to not worry for an hour or so.”

  The nurse came. Jeffrey smiled when he saw her. Her name was Merry, not Mary, and he said he had missed her. He was happy to see her. I kissed Jeffrey goodbye, promised to be back soon. Everything went fine for a while. We went to dinner. Larry and Will discussed the baseball season. Amelia made a plea for a new wardrobe. She wanted sweaters from Benetton. Larry told her she could have one if she wouldn’t throw it on the floor when she took it off at night. Then we went to the movie. I never have seen the end of that movie, but I assume that, as usual, the good guys won.

  I sat there in the dark trying to concentrate, but I just felt so bad that we had left Jeffrey alone. I kept thinking that he would love the movie, how he could scan the sky with his telescope looking for the planet where Luke Skywalker lived. Finally, I couldn’t take it anymore. I got up. I didn’t even notice that Larry followed me. I walked out in the harsh light of the lobby through the heavy popcorn smell over to the pay phone. When I reached for the receiver, a hand came and pressed it down, wouldn’t let me lift it. I turned around to see Larry standing behind me.