We Are Gathered Page 9

  It did bother me a little bit when Elizabeth crouched in front of Jeffrey’s wheelchair, cocked her head, and sang, “We’re going to have a lot of fun, Jeffrey.”

  “He’s not a baby,” Larry said to her, a little more sternly than he should have. “He’s not retarded.”

  I winced for Jeffrey when Larry said that because Jeffrey probably did not realize until that moment that that is what he looked like to other people. After that day, Jeffrey would correct people. “I’m not retarded,” he would say when he sensed they were talking down to him. They could not understand what he was saying, and they would look behind the wheelchair to me.

  “He says he’s not retarded,” I would translate.

  We left Jeffrey in Elizabeth’s care. Carla must have been assigned to another child, because we didn’t see her with him again, just Elizabeth and Jeffrey. I remember her standing underneath the flagpole; there wasn’t enough wind to lift the flag, and it hung, limp and sad, its stripes twisted inward. When we were almost to the car, I turned to look back again and wave. Elizabeth waved, then lifted Jeffrey’s hand to make him wave, the way children lift the hands of their dolls. I almost turned around and got him when I saw that. “What is she doing?” I asked Larry, unwilling to believe what I had seen. I knew Larry would share my anger, and a wave of disgust came over his face. He stared at Elizabeth, a pretty girl. Slender, high cheekbones, and enchanting. I thought of that Frank Sinatra song, “When I was seventeen, it was a very good year.” Jeffrey would never know that joy, summer days, pretty girls, first kisses. I started to go back to save my son, but Larry took hold of my arm.

  “You need to rest,” he stated.

  “No, I don’t,” I answered.

  “I need to rest,” he said. I examined him to see if he was lying. His eyes did look a little red. Larry has a long, thin, aristocratic face, the kind of face that looks funny when it assumes any emotion: joy, sorrow, or anger. People consider him attractive, but he is only truly handsome when his face is blank. When he smiles, he looks endearingly goofy, and when he frowns, he is ugly. Usually, he is able to maintain the blank repose that suits him best, and this can make him very difficult to read. He touched his finger to a drop of sweat on his temple, and I decided he was telling the truth. The camp was in North Carolina, and we had planned to spend a week at the beach. Larry put his arm around me. “He’ll be fine,” he said.

  We were back to pick Jeffrey up the next Saturday. I could not believe a week had passed. I felt I had wasted it. It took me three days just to get used to the fact that I was not needed every second of the day. Larry had to practically restrain me to stay in bed in the mornings, but it wasn’t relaxing for me, lying there. The energy was there to be used, and if I lay in bed, it only revved inside me, overheated me. We stayed at a luxurious hotel on the water, and Larry had breakfast brought up every morning, but I could not make him understand that I could not eat lying down and that I could not sleep late. I would roll out of bed early in the morning, sometimes before sunrise, and careful not to wake Larry, I would leave the room, walking the pink and gray carpeted halls of the hotel in my nightgown.

  People left their room-service trays from the night before outside their doors, and I would scrutinize them. I’ve always found leftover things, old and used things, reminders of the past, somehow sad. I never say “the end” when I finish reading a story, because I don’t like endings. Actually, I don’t believe there is any such thing as an ending. There are no beginnings either, only moments when we realize what is happening. The day Jeffrey was born, his life began to me, but I am sure he was a force in the world before I held him in my arms, and he will be one after he is gone.

  When I got lonely in the hallway, I would go back to my room and wait for Larry to stir. When he woke, he would ask me how long I had been up. I would always say, “I just now opened my eyes.” A few mornings, we made love. I don’t know if he believed my fake enthusiasm. I know it is terrible to admit it, but part of me is always with Jeffrey. He is the only thing in the world that completely needs me, and there will be a day when this need is gone. I expect Larry, Amelia, and Will will still be here, and I promise I will give them my undivided attention. I will initiate sex; I will buy lingerie. I will attend every play, concert, ball game, dance—there will be years and years and so much love to give them. I promise.

  The week passed, and I would be lying if I said I enjoyed it. Ultimately, I was bored. Larry wanted to sit by the ocean reading crime novels, but I found it impossible to just lie there watching the waves roll toward me, crumble, recede, and roll toward me again. Anxious, I would get up to go for a walk. Most of the time, Larry let me go, but the first few times, he begged, “Why can’t you just sit here with me?” I would concede, settle back in the lounge chair, but it took a great effort to lie there. If I brought up Jeffrey, he answered with the same five words every time. “I’m sure he is fine.”

  By Saturday, I was excited to get my son. It seemed like much longer than a week since I had seen him last, and I remember telling Larry, a little bit to his chagrin, that I did not want to send Jeffrey to camp again. “We’re not going to have enough time with him as it is,” I said. “When he dies, I’m going to wish I had this week back. When he dies, there will be plenty of time for trips to the beach.”

  It was raining, and the sand by the side of the road was the color of putty. I don’t think it’s good for us to avoid thinking about Jeffrey’s death. Amelia and Will don’t need to dwell on it, but Larry and I need to be prepared. “It’s only a week,” Larry said. “How much can change in a week?”

  “The whole world can change in a week, a day even,” I said. We were driving along a narrow causeway, and the rain was stirring up the sea in shades of gray and blue. The whitecaps twisted like long beards. “Yesterday we couldn’t escape the sun. Today you can’t even see it.”

  “Helen,” Larry said. “I wish you could be happy when you are alone with me.” He seemed to be concentrating very hard on the road. “We used to have fun together.”

  “I am happy when I am alone with you,” I said. His hand was abandoned on the seat, and I picked it up and held it.

  “I didn’t get the feeling you were really with me this week.” The headlights of oncoming cars emerged from the darkening sky.

  “I was with you,” I protested. “I had a wonderful week.”

  “Did you?” Larry asked.

  “Yes.”

  He was quiet for a while. He switched the windshield wipers to a faster gait. The rain was getting stronger.

  “I hope the cabins are warm and dry,” I said.

  Larry glanced in the rearview mirror and then over at me. “I’m sure they are,” he said. Then he added, “I’ll be glad to see Jeffrey.”

  “So will I,” I said emphatically.

  “I know.” Larry shook his head. “I miss Amelia and Will too.”

  “Of course,” I said. “But they don’t miss us. They’re so happy when they’re at camp.”

  It was a two-hour drive to the camp, and as the rain continued to fall, I became increasingly convinced that something had happened to Jeffrey. I didn’t share my anxiety with Larry. I was often worried for no reason, and I knew he would remind me of this fact and only dismiss my concern. Larry had the radio tuned to a classical station, but it was not loud enough for either of us to hear over the rain and the rhythm of the windshield wipers. Jeffrey had had a checkup about a week before camp, and the doctor said he was shockingly healthy, but it was still possible for him to die suddenly. His heart could stop beating; he could fall and hit his head or land in a shallow puddle and drown because he could not move. I have forced myself to imagine in great detail life without Jeffrey. I’ll still have Amelia and Will. They will get married and have children; I’ll have a rich and enviable life. I’ve told myself that I will find a way to be happy when he’s gone. God would not want me to mourn forever. There is, however, a narrow window of time that I am not sure I will be able to endure
: the actual day of his death and the few days or weeks after. If I can get through that, everything will be all right, but it is that specific time that I dread.

  At the camp, we were ushered into the mess hall where other parents were waiting for their children. Open umbrellas rolled on their spokes, dripping water. One man shook his hands in disgust, as if the rain were contaminated. Around the mess hall were construction-paper collages, heaps of clay in unrecognizable forms, drizzles of paint on paper, the art projects of younger, less afflicted children. I watched the other parents greet their children as they were wheeled in. The counselors draped yellow ponchos over the wheelchairs, but the children still had streaks of water on their faces. Not everyone finds a disabled child a blessing, at least not at first. There were parents who strode forward, their faces set and their hands reaching in advance for the handles of the wheelchair. They saw the disease as a judgment. Those who covered their children with kisses and knelt at their feet were still blaming themselves and their own faulty genes. Those who had to be called twice and then walked wearily over felt themselves unjustly accused. So did the ones who smiled and talked too long to the counselors, pretending they didn’t mind their burden. I could recognize it because I had felt all those things, and it was only recently that I had realized, or finally accepted, that Jeffrey’s delivery to me was a compliment. It was no accident, and it was nobody’s fault. These children must be born to parents who are capable of loving them, and as I watched these other men and women, wet and tired, like stray dogs, I wanted to tell them that it would all work out. They would learn to love their children, even to love the responsibility that those children entailed, because they were capable of it, and they would not have been given those children if they were not. In genetic terms, I am tempted to say that somewhere near the gene for muscular dystrophy that I carry is the gene for loving someone with muscular dystrophy.

  Larry spotted Elizabeth with Jeffrey before I did. He took three giant steps over to them and blocked my view of my child for a moment. He squatted by the wheelchair, and I saw his hand reach up and cradle Jeffrey’s face. Then I went cold all over, my body realizing before my mind that something was wrong. I followed Larry’s arm to where his hand rested on Jeffrey’s cheek, right underneath two purple and gold bruised eyes. By the time I was at Jeffrey’s side, Larry was already quizzing Elizabeth. “How could he fall?” Larry demanded. “How could you let him fall?” I moved Larry to one side so I could see Jeffrey. The arch of his nose was red and swollen. The backs of his hands were bandaged. Jeffrey’s skin is more tender than other children’s. In sunlight, you can see a faint network of blue and red veins spidered across his cheeks. I am told this fine skin has nothing to do with his disease, but I don’t see how it cannot be related. I began inspecting him from the top of his head down. Minor scratches can turn septic on him if left unattended. I pushed my fingers through his hair, checked behind his ears, the back of his neck. “Are you okay?” I asked him. “Does it hurt anywhere?”

  “I fell,” he said. Over my head, Larry continued to interrogate Elizabeth. “Weren’t you aware of the responsibilities that this job entailed? Did you think this was just going to be fun? Something good to put on your college applications?” He didn’t give her a chance to answer. “You thought it was going to be easy. Arts and crafts and singing songs.”

  I needed to concentrate on what I was doing and considered telling him to shut up and let me work. I pressed Jeffrey forward, balancing his head and arms against my stomach so I could examine his back. A slow rage was starting to boil in me, not at Elizabeth per se, or not at Elizabeth only, but at the entire camp, all the doctors and nurses who could allow something like this to happen. God gave Jeffrey muscular dystrophy, but it was the camp that allowed him to fall. There was a scrape from his wrist to his elbow, crusted and scabbed and left unbandaged. Because of God, Jeffrey will die young, but because of Elizabeth Gottlieb, he has had more pain added to his short life.

  Larry kept right on talking to Elizabeth, but I was surprised at what he said next. “You don’t realize what you’ve done,” he groaned. “Now we can never go away again.” I refused to look up or acknowledge what I had heard, though he was right. I was busy removing Jeffrey’s shoes to make sure there were no broken toes. I have disliked Elizabeth Gottlieb ever since that day, not only because she allowed harm to come to my child—I am not insane, I recognize how hard it is to care for Jeffrey, how easy it is to let him fall—but because she stood there, in pink shorts and a tank top from Jacksonville Beach, and said, “I’m sorry. It was an accident,” and cried not for Jeffrey but for herself.

  I was not going to bring Jeffrey to this wedding, but he was with me the day I got the invitation. It was early spring, and I wheeled him to the end of the driveway to get some fresh air while I picked up the mail. He noticed the heavy white envelope right away and made me understand that he wanted me to open it and tell him what it was. I obeyed, and I informed him, “It’s an invitation to a wedding. Someone is getting married.”

  “Who?”

  “Elizabeth Gottlieb. Do you remember Elizabeth?” Jeffrey’s eyes swept cockeyed in all directions.

  “Am I invited?” It took me a while to realize what he had asked. I looked at the invitation. His name was included with Larry’s and mine and Amelia’s and Will’s. It was funny to see them all listed there together, because I got used to thinking of Larry and Jeffrey and me as one family and Larry and Amelia and Will and me as another. Amelia and Will are so rarely home now. Amelia is in law school in Washington, D.C., living with her boyfriend who is, I think, too old for her, not a boy at all, but at least he is Jewish, unlike, from what I have heard, the man Elizabeth is marrying. Will is in college, only an hour away, but he rarely comes home. He is busy with his fraternity, and I can’t keep track of the girls he dates.

  “You are invited,” I answered. “Do you want to go?”

  His head was fallen over to the side, and one eye was angled right into the sun. He squinted up at me, and I thought he nodded. “You do?” I asked.

  “Yes,” he said.

  I had to call Annette Gottlieb and make sure she truly intended to invite Jeffrey. He can be a shocking sight to some people. I tried to think of a way to phrase my question that would allow her to answer it honestly, but in the end, it’s a battle with her own conscience, and I’m not sure there’s a way to make that easier for people. I heard Annette hesitate before she responded, “We would love to have him. Is there anything special I should do? Anything you’ll need?”

  “No, I don’t think so,” I answered. I’m past letting those hesitations bother me. She made her decision. “We don’t have to climb stairs, do we?”

  “It’s all in the front yard,” Annette assured me. “I’ll set the chairs up wide enough for his wheelchair. Josh’s father is in a wheelchair too.”

  “Thank you,” I said.

  “Elizabeth will be thrilled to have him,” Annette added. “Jeffrey is very special to her.”

  I don’t think Elizabeth ever told her parents what happened at camp. She must have been ashamed of herself, and she did not want to share that with her parents. All children have pride. Of necessity, I’ve observed Jeffrey more closely than other parents observe their children, but I know there are still things he keeps from me. Someone who has not raised a handicapped child might wonder how Jeffrey, in his limited world, could possibly have secrets. All I can answer is that the world is big for those who can imagine.

  It took forever to dress Jeffrey this morning. His arms and legs have a mind of their own, and sometimes I wish I could just sew the clothes on around his body. Amelia described dressing Jeffrey as such a struggle, like putting clothes on an oak tree. She was not wrong. His arms are like branches; you pull them into place and they snap away. Still, it was worth it to see him in a suit. We have not gotten Jeffrey dressed up since Amelia graduated from college, and I did not remember how handsome he could be, with his glassy blue eyes and his w
et hair brushed back off his face. I kissed him impetuously, though I try not to do that too much. It isn’t fair to him because he cannot pull away. I could kiss him a hundred times a day, but I know he doesn’t want me to. I allowed myself to think, just for a moment, of how handsome he would have been without this disease. Nothing good can come of thinking that way, but sometimes I just cannot help it. Larry is stronger than I am in that regard. When Jeffrey was diagnosed and we were told that there was no cure, Larry gave up hoping right away. It took me longer to accept, and I know I caused him pain when I suggested that the doctors had been wrong. Tests weren’t perfect, I argued, and when Jeffrey managed to walk across a room or climb the stairs of his little slide one day, I could convince myself that God had answered my prayers and that this child had been delivered. God sent Sarah a baby when she was ninety years old; he could lift the curse from Jeffrey. God did not choose to answer my prayers. I knew there had to be a reason, but it was years before I discovered it. It is necessary that some people on this planet have the capacity to love despite great hardship. It’s not me I’m talking about. It’s Jeffrey.

  As a baby, Jeffrey seldom fussed. He loved to be held, and he would nuzzle his head between my neck and shoulder, and gaze up beatifically. Even the babysitters loved him. He had a little swing that you could place him in, with holes for his chubby legs. The swing was on a spring, and he would bounce up and down, laughing and delighted with himself. That swing kept him entertained for hours, but he was equally amused by any of his toys: a colorful series of pop-ups that a dog, a cat, and a clown leaped out of. He had a cobbler’s bench with square and round pegs and a dozen jars of Play-Doh and the Fisher-Price barn, which he liked to fill and snap open, watching the plastic cows and trees tumble out. He was fond of Sesame Street, and we had Ernie and Bert puppets, who went by the names Ennie and Bet, and there was a gigantic Big Bird emblazoned on his stroller. One day, while we were out walking, I told him that maybe Big Bird would flap his wings and take us flying. We ran a few feet and pretended to take off, and then I cried, “Look! We are flying! We’re up in the clouds!” I asked him if he could see the clouds.