by Frank Deford
We had a nice morning together, and by the time all the presents were open, Alex was so exhausted that she didn’t even bother to go up to her room. She was still in her quilted blue robe, and she just lay down on the sofa in the living room, and dropped off immediately, snuggled up with Tink.
We all looked at her there. How beautiful she still managed to be, even as the disease had ravaged her, even as she breathed in agony. I took movies of her just lying there.
When Alex woke up she found Carol in another room. Christmas afternoon is always a most peaceful time, unless somebody has been fool enough to give a child a drum or turn on a football game. Carol was just sitting there reading when Alex came to her. “Mother,” she said, “it’s been a wonderful Christmas for me. I got everything I wanted.”
Carol kissed Alex and hugged her and told her how happy she was to hear that. But then, suddenly, Alex stamped her foot. “Oh, why did I have to get this disease? I hate it. It’s so unfair.” And she started to cry a little. But then she caught herself again. “But having Buffalo will make things different. He will. He was a wonderful present.”
“I’m so glad, darling.”
“But, of course, you know what would have been the best present of all.” Carol nodded. Alex said it anyway. “A cure for my disease.” Carol nodded again. There wasn’t anything she could say, and she could tell that Alex wanted to say something more, anyway. And she did. She said, “You know, Mother, you know what I’ve wondered about a lot?”
“No, what’s that?”
“Just what it’s like not to have a disease. I’ve often thought about that, Mother. Just what it would be like not to have a disease. I wouldn’t even ask for forever. Just for a day I’d like to wake up one morning, and not have any pain or be sick or anything. Just once to be free.”
Merry Christmas.
Chapter 23
Something changed once Alex made Christmas. We all relaxed a bit. There was more pain for her, poor thing, but there was a certain peace too. The battle was o’er. In fact, when I slept with Alex on Christmas night, there were a couple of times when she was suddenly still and quiet with her breathing, and I thought she must have died right then. And I could have accepted it, too.
But she was not quite ready to go. After the silence, both times, she suddenly started coughing, and crying, “Help me! Help me!” And then, when she was better, “I’m sorry I had to wake you, Daddy.”
The next night, when Carol slept with Alex, she had the exact sensation I had, and twice she came in to wake me and tell me that she thought Alex was going. I told her I had had the same fears the night before, but I went into Alex’s room, trying to act casual, as if I regularly dropped by at two in the morning. “Don’t worry, Daddy,” Alex said right away.
“Oh, I’m not worried,” I said. “I was just wondering how you were sleeping.”
“Fine,” Alex said, and brightly, too. “You know, I’m just waking up and coughing a lot.” That’s all; everything’s relative. We had all misplaced so much reality by then.
But nothing could calm Carol for long, and when she came for me again, in even more desperate fear, I moved into Alex’s room and climbed in with my two girls. When Alex was through coughing again and had caught her breath as best she could, she spoke up, rather conversationally. “You know,” she said, “that dog has just changed my life so much.”
“How’s that, Princess?”
“Can’t you tell, Daddy? Now I don’t talk about my disease that much.”
I wanted to laugh at the madness of it all.
And so Alex lived some more. She lived to see the New Year, A.D. 1980. I saw it clearly in my mind for the first time: ALEXANDRA MILLER DEFORD, 1971–1980. We woke up both Alex and Chris at a quarter to twelve, and watched the ball fall in Times Square at midnight. Nineteen-eighty. She’ll never make a census, I thought. Isn’t that funny? Alex was born a year after the last one, and they wouldn’t count again till April, when she’s be gone. She’ll never be counted. That seemed wrong, somehow. Happy New Year.
The holidays were gone for good, officially, and that did make life more normal. I took a couple brief business trips down to Virginia during the following two weeks, a fact that frightens me horribly now when I think back on it—that I might have been away from Alex when she died—but at the time she seemed to have achieved a certain equilibrium, and once we were past the holidays we seemed to convince ourselves that death was, somehow, no longer imminent. Besides, I was trying to occupy myself some in order to—let’s face it—escape. I was always more of a coward than Carol.
Tina Crawford was a godsend. She spent more and more time with Alex those last days, spelling Carol when I was away. Tina has reassured me some, too. “Don’t worry,” she says, “Alex never would have died without you. I know it sounds crazy, but children pick their time to die.”
Tina was wonderful in many ways, not the least that she was someone outside the family in whom Alex could confide. To the end, Alex protected her family, preferring to maintain a certain comforting fiction with us. Tina gave her the outlet she needed.
One night Tina volunteered to baby-sit for us, so that I could get Carol out of the house, if only for a few hours. When Tina tucked Alex in, she asked her if she wanted to read or play a game, or maybe just snuggle and chat. Alex opted for the latter, and they lay there for a while, Alex leaning forward on Tink, trying to breathe better. By then, understand, a great deal of her life was devoted merely to the supposedly simple business of breathing.
A few moments passed in dreamy silence, and then Alex heaved a sigh. Tina asked her what was up. “Oh, you know, Tina. I just keep getting weaker. I can’t even sit through a game anymore. Nothing is getting better. It’s hard when nothing ever gets better.”
“I know.”
“All I can do is think about things I used to do. Like when I could dance and play with my friends.”
“Well you do have a lot of nice things to think about,” Tina said.
“When I was little, I was chubbier. I really was. I was healthy looking. But now, as I get older, I just get skinnier. You know what I think Tina?”
“What?”
“Sometimes I think soon there’ll be nothing left of me, nothing at all, and then I’ll just float away.” She let her hand drift up. Somewhere in the back of her mind Alex must have retained that imagery of the seagulls flying off into the fog in Maine.
“Float away?” Tina asked.
“Yeah, like a leaf in the wind, or maybe a balloon—phffff. Maybe I’ll just float off like a balloon. Just like that.” And Alex sighed again. “You know what’s so scary?”
“No, what?”
“When I can’t breathe, Tina. When I just can’t breathe at all. I’m sorry, but I get all upset then, because I’m afraid I’ll die and then I won’t see my parents or Chrish again. And you know what else is scary, Tina?”
“What’s that?”
“Some people die a very painful death. They do.”
“Yeah, I know, Alex, but many more people die a peaceful death, because the doctors can give them special medicines to make it easy.”
“Oh, yeah? I wasn’t sure about that.” And Alex relaxed a little then. This was obviously something reassuring, something she had wanted to know. Why couldn’t I have figured that out? But then, even if I had, how could I have gone up to my dying child and talked to her about ways of dying? So it was especially good that Tina could tell Alex these things. And Alex rested on Tink, soothed some, it seemed. But suddenly she raised her head up and glanced around the room. “Look, Tina,” she said.
“Look at what?”
“Just look all around, all around my room. Look at all the nice things I have. I have so many nice things. Tina. And I have a wonderful mother and a wonderful father and a wonderful brother and I have this new puppy now, and I live in this country, and I have so many friends, too. Isn’t it funny? I have so much. But the only thing I’ve had bad luck in is my health.” And she wa
s quiet again, thinking. The room was soft in the half-light, still and quiet.
After a while, Tina said, “Alex, you were talking about people dying. What does that mean?”
“Well, it means a soul floating away to Heaven.”
“Okay, what’s a soul?”
“Gee, I kind of forget. What is it, Tina?”
“Well, people have different ideas about this, but I believe that a soul is all the beautiful things about a person, and it lives in a peaceful place called Heaven. And it doesn’t have any aches or pains.”
Alex sat up all the way. “Not any? Not any at all?”
“That’s right—none at all. And the soul also becomes part of everyone who ever knew that person, so they can’t ever be away and miss each other too terribly.”
“You know what?” Alex said then.
“What?”
“Angels live in heaven, too.”
“Sure,” Tina said, “I knew that. Why, there’re even some angels who wear tutus.” Alex let out a giggle. “No, I’m not kidding. They wear tutus, with shiny sequins all over them. And Alex really laughed at that, although being careful not to laugh too much and end up with a coughing fit.
“Here, touch,” Tina said then, changing the subject. She was five months pregnant, and she took Alex’s hand and placed it on her stomach. Alex felt the baby move and giggled again.
“Oh, I hope when this baby’s born, it’s a girl,” she said, anxiously, curiously, but very definitely in a tone that acknowledged that she would never see the baby when it was born.
“I hope so, too,” Tina said. She already had two boys—Jonah, Alex’s classmate and good friend, and little Jacob, whom Alex had so loved to hold when she had been strong enough.
“What are you going to call it, Tina? I mean, if it’s a girl?”
“Well, maybe Zoe—” Right away, Alex made a face. “You don’t like Zoe? Go on now, Alex, tell me the truth.”
“No, not really, Tina. I’m sorry.”
“That’s okay. So, how do you like Jennifer? Or Kate?”
“Oh yeah,” Alex said, brightening.
“Either one?” Alex nodded. “Well then, I’ll name her Jennifer or Kate.”
“That’s nice,” Alex said.
“And I’ve got a middle name all picked out too,” Tina said.
“What’s that?”
“Alex,” Tina said. “Whatever her first name will be, her middle name will be Alex,” and she took Alex’s hand and laid it back upon her child in her belly.
There was so little of anything that Alex could do any longer. Her friends remember little Buffalo yanking playfully at her braids, but she was too weak even to shoo him away. The last time she ever went out on her own, when I left her over at Aimee’s a week before she died, Alex could hardly walk, much less dance, and so she asked Aimee to dance for her. “Alex just got so slow,” Wendy says. “I was going to color with her one day in her room, and she said, ‘No, Wendy, I’ll just rest now and watch you color.’”
Carol tried to take her out to lunch every day. They would pick different restaurants—Burger King, Friendly, the McDonald’s way down in Norwalk—and when they would drive home they would sing together. It just started up naturally, and then it became an instant custom, the two of them singing at the top of their lungs in the car as they drove along. “You Are My Sunshine” was the favorite. Whatever else they sang, they did that one every day for sure.
But every day it grew more difficult. Alex was breathing so loudly, with such difficulty, that everybody in the restaurants stared at her, and Carol knew that was hurting her, even if they both pretended it wasn’t going on. More important, Alex just didn’t like to be away from her oxygen that long anymore. So one day—Carol was pretty sure it would be the last time they could go out together—after they had lunch, they also went to a little shop, called Sweet Pea, which has lots of stuffed animals and cute handsome toys. Carol carried her all around the shop. Alex had to be carried most everywhere now.
Then they drove home, singing “You Are My Sunshine” as loud as they could. There was a lot of laughing, even though Alex surely understood, too, that soon she wouldn’t even be able to do a simple thing like that anymore. Down the street from our home, there was a big old house that was being done over. January, with the trees bare, and no curtains up yet, you could look right in from the road and see how they were fixing it up inside. The days before Carol and Alex had both spotted a fancy ceiling fan with all sorts of lights and everything. And this time, as they went by the house, Alex said, “You know, Mother, I wish I had the money to buy you and Daddy something really nice. I’d like to buy you a fan like that, because I want you to have something nice to remember me with.”
After that Alex seldom even left her bedroom, and she kept the oxygen on almost all the time. She could still laugh at Benny Hill, though, still chuckle over whatever jokes Chris brought back from his school, still see the humor all around her. One day Tina brought Jonah over after school to visit, and he climbed into bed with her, and together they read Alex’s favorite book of poems, Where the Sidewalk Ends, by Shel Silverstein. At one point, Alex started laughing so hard at a poem that both Carol and Tina began to cry—the incongruity of it all. It was almost as if she were literally going to die laughing.
A few days later, when Jonah heard that Alex had died, he went up to his room and wrote this.
I still think that you can hear Alex’es laugh. I always Like when she laughed. I felt like I would laugh along. I feel and ecpect her to just walk in my room and sit down and then I feel sad when she doesent come in. If only time could stop when she was alive. She would still be here. She used to call me up all the time and Pretend to be Other people but her hestairical laugh gave it away. It made me happy that I knew her but its sad that shes not alive any more.
Chapter 24
It was my night to sleep in with Alex, but Carol suggested that all three of us stay in her bed. Alex loved that idea, and we all piled in together. She would have liked to have been in the middle, between her mother and father, but that wasn’t possible, because she had to keep her nose prongs on all the time, and they were attached, on a fairly short tube, to the oxygen compressor that was placed next to her side of the bed. The compressor made a horrible kind of wheezing sound, and it would kick out a thud at regular intervals. I hated that damn thing even as I had come to accept it as a part of Alex’s room, her life, our house, our lives.
By that time the compressor didn’t even bother me when I slept in with Alex, but this night, of course, none of us slept much at all. The pain was worse for Alex, and the pills we gave her seemed of little value. “Help me! Help me!” she would cry, more and more. Finally, around three-thirty, we called up Neil Lebhar, who was her pediatrician in town, and he came right over and gave Alex a shot of morphine. She was still alert enough to worry that the shot would hurt her, but the blessed thing took effect quickly and put her right out. Peace for her, thank God.
I went back into our bedroom then, so that we all might be more comfortable and get some sleep, and, in fact, it was past seven before I woke. I went downstairs to feed the dogs, and there, glancing out a window—I shall never forget this sight—there on the lawn, closer to the house than ever I had seen one, was a huge, coal-black raven, the bird of death. I am not being dramatic. It was there. Out loud, to myself, I said, “So this is what the day your child dies looks like.” It was only a normal sort of January day, crisp and clear, the ground brown and ugly without any snow cover.
Carol and I had decided against calling Chris back home during the night—so long as we felt that we absolutely didn’t have to—but now, around eight, Alex began stirring, and we phoned Dmitri’s house and asked that Chris be brought back right away. He still wasn’t certain what the full situation was, though. “Do we have to take Alex back to the hospital, Daddy?” he asked me when he came back into the house.
I only shook my head. “No, it’s more than that.”
/> “What is it?”
“Christian, I’m afraid Alex is going to die sometime today.”
He shook his head at me in disbelief, and then fell into my arms and cried. Till then, he told me much later, he had never permitted himself to believe that this would ever really happen. And I had never had the courage or the chance to prepare him. I was going to go over all of it with him on Sunday, but here Alex was, dying on Saturday.
When he was better, I said, “Come on now, Alex wants to see you.”
“Daddy, what do I say to her?”
“You don’t have to talk about it. I know it’s hard, but just be as casual as you can, and be as loving as you can.”
“Does she know, Daddy?”
“I’m sure she does.”
How she rejoiced when he came to her. “Oh, Chrish, my little brother, Chrish!” They chatted a while, and then Alex saw how hard it was for him, and she suggested that he go play around. She was right. I don’t think it would have been good for a ten-year-old boy to have to endure staying hours in his dying sister’s room. Carol and I just told him to play nearby, keep us posted, and come back every hour or so to see his sister. It was better that way for Alex, too. It gave her a real treat whenever he popped back in. Somehow it even made things seem a little normal when Chris would come in and tell her all the mundane little boyish things he’d been doing outside or over at Dmitri’s for the past hour or so.
Alex would doze off now and then, and that one time, midway through the morning, she asked me to go out and get her the root beer. By the time I got back to the house from the store she had drifted off again. I called our minister, Father Kennedy. I walked around. I tried to read the newspaper. The next day was the Super Bowl, Pittsburgh and somebody. At one point I walked over and looked behind the oxygen compressor, that huge awful box going wheeze, wheeze, thump, wheeze. There was an hour tabulator in the back, sort of a time odometer, which registered how many hours the machine had been on. You were billed by the hour. I had to fill out a form and mail it in every month—1186.5 hours, 1238.2 hours, or whatever. When I looked, the total read 1306 and something.