by Frank Deford
And Alex immediately did one more exasperating thing, and left Carol with no alternative but to storm off to the canteen for a cup of coffee. As soon as she was gone, Barbara said, “Alex, that was horrible of you. You were really mean to your mother. You shouldn’t be like that.”
And Alex said, “Oh, Barbara, you don’t understand. She was just being too sad, and that wasn’t good for her. But if I told her I didn’t want her around that would’ve hurt her. This was best for her. I’ll be all right when she comes back.”
Barbara shakes her head now, remembering Alex. “It’s a horrible thing,” she says, “but the death of a child in the hospital—any hospital—can become almost routine for the staff. That’s even more the case with a cystic fibrosis child, because it happens regularly enough, and each death happens much the same way. We can see it coming. There’ve been several children I especially liked who got very sick, and as they came closer to dying, I always made myself hold back. But with Alex, she was so special, so caring of others, even when she knew she was dying, that you couldn’t do that, you couldn’t back away from her, because she just pulled it out of you.”
Alex began to inquire more directly into the implications of the lung collapses. Where does this go? What does this mean? Why does my lung keep collapsing? Will it ever stop collapsing … so I can go home? She began to talk more and more to Tina about cystic fibrosis itself. “Tina,” she said one day, “this disease has gotten so much bigger than me.”
“Bigger?”
“Yeah, it’s really in control of me. You know what I think?”
“No, what, Alex?”
“I think it’s angry with me. Maybe I should try and be its friend.”
“How?”
“Well, that’s why I think I shouldn’t take my medicines. You see, my medicines fight the germs and the cystic fibrosis. Maybe if I were its friend and I didn’t fight back it wouldn’t be so angry with me.”
As childish as this sounds, it is, in fact, a form of denial often practiced by much older CF patients, who hate their disease so much that they begin to hate everything associated with it, including their therapy. So they end up not doing therapy, because that is the only way they know of striking back at the disease itself.
But Alex never evaded the greater issue. “Will I die, Barbara?”
“Not right now, Why?”
“I’m afraid.”
“What are you afraid of, Alex?”
“I’m afraid most that when I’m gone, my mommy and my daddy will be so sad. And I’m especially afraid about Chrish.”
“Why?”
“Because then he’ll be all alone. My mommy and my daddy have each other, but Chrish won’t have any other brother or sister.” More and more, Barbara said, Alex worried about her big brother, and how he would be alone.
One evening, near the end of her last stay in the hospital, I told Alex I had to go home for the night. I added, to assuage my guilt at leaving her, that I hadn’t seen Chris all day and should spend some time with him too. And she just shook her head and said, “Oh, Daddy, I’m breaking up the family, aren’t I?”
“Of course not, Alex.”
And then she began to look like she was going to start to cry. “Oh, Daddy, I want to come home so much. I’ve been up here so long I don’t even remember what my little house looks like.”
She was so scared then that she would never escape the hospital. Cyd remembers that, starting about that time, Alex would occasionally allay her nervousness by reverting to baby talk—something she hadn’t done in years. I think she had a greater fear of dying in the hospital than she did of actually dying.
From then on, too, I started staying nights in the hospital. There was no longer a need to worry about setting a precedent. There weren’t going to be many more nights. So either Carol or I slept in the room with Alex most every night the rest of the way. Alex never really wanted to be left alone anymore. She needed to know that someone she knew and loved would be there with her if she started to die. Apparently, most dying children eventually enter this phase. It is like being afraid of the dark; if you just have someone with you, then the dark is not frightening; it may even be more comforting than the light. Alex just didn’t want to be alone.
Finally, too, Alex turned to Dr. Dolan for some official confirmation. “I’m not going to live much longer, am I?” she said, looking him square in the face. He hesitated. He had been through this sort of thing before with other dying children, and, anyway, he knew very well that he could not kid Alex. But he was trying to find just the right words. She grew impatient for his answer, and told him, “You have to tell me the truth, because I’ll know if you’re lying to me.”
“Oh, I know you will, Alex,” Dr. Dolan said. “I can’t fool you.”
“Well?”
“Well, Alex, I do think you’ll go home, I do believe you’ll get out of here … but no … no, I don’t think things look too good for you.”
And Alex smiled at that and reached out and patted Dr. Dolan’s hand, to make it easier for him. “Okay,” was all she said.
It was a couple days later, at her most philosophical, that Alex chose to first bring the subject up within the family. Thank God, it was with Carol. “Why me, Mother?” she said—but not a whining complaint, just the simple question. Alex was not saying why did it have to be me? She was only asking: Why do you suppose it was me?
I don’t know how Carol did it. But she was prepared for the question, and she said, “Well, Alex, God must have a reason, and I think maybe that reason is because God knew that you would be the best at showing other people how to live and how to be brave.”
Alex only nodded; that made sense to her.
I had to go out of town for a few days on December 11, so I went up to the hospital to spend an extra amount of time with Alex before I took off. Things were not going at all well. The tubes in her chest should have been registering minus five, whatever that means, but they were only down to minus one. I understood by now that any future operations could only be tried at the risk of her life. Yet there was no reason to believe that one of her lungs wouldn’t collapse again. One way or another, it just didn’t seem that she would ever leave the hospital alive.
And yet, there Alex was when I arrived, just beaming, her whole face painted like a clown. I mean a complete professional job, all white and red, bright and cheery, diamonds around her eyes, and, on her cheeks, those big red balls she herself used to put on the faces of all the people she drew. An expert in makeup had come by and painted the kids. We laughed and joked, Alex carried on like a clown, and we even talked about the circuses we should have gone to. Her spirits picked up even more later in the afternoon, because Mrs. Beasley, from the third grade, and another one of her favorite teachers at the school, Mrs. Sherwood, came by to visit her.
“Daddy,” she said, as soon as they left, “do you think I can get back to school before Christmas?”
“If your lungs keep getting better, sure you can.”
She shook her head with determination at that. “Oh Daddy, Now I’m sorry about those things I told you. I’m going to keep on hoping. I am! I promise you. You have to hope, don’t you?”
“Yeah, I really think we all have to.”
“Is hoping exactly like wishing?”
“Hmmm.” I’d never thought about that one before. “Yeah, pretty much I guess.”
“I think hoping is more like, you know, you really can expect it. Really,” Alex said. “I think wishing is more like dreams.”
“That’s an awfully good explanation.”
“But neither one of them is like praying,” Alex went on. She had thought a lot about this.”
“No?”
“No, hoping and wishing are okay, because they don’t involve God and Jesus the way praying does.” That was the word she used: involve.
“I think that’s absolutely right,” I said, and just then Carol arrived, unexpectedly. Neither Alex nor I had anticipated her coming th
at evening, since I was going to spend the night. Alex was especially excited, because her mother would get to see her in her clown getup. She clapped her hands and cheered.
“Oh, it’s Mommy,” she cried. “Oh, Mother! My wish came true.” And then she paused and looked over to me, her head tilted a little. “But not the real wish,” she said. It was a small private joke of hers.
But, sure enough, some hopes are fulfilled. Even Alex caught a little good fortune now and then, and that time, for no real reason, the lungs held after the tubes were removed. She seemed to sense it. Carol and her mother came visiting one day, and they brought a tutu for Alex. It was just her meat: garish and shiny, with sparkles all over it, and she put it on and went down the hall of the ward, spinning around and laughing, sort of using her IV pole as a dance partner. “It was incredible,” Carol told me later. “She was really carried away, and when the children and their parents and the nurses came out of the rooms, it gave her even more energy, and—you should have seen it—she really laid it on. The more the people would clap, the more elaborate her dancing would get—and here she was, shackled to an IV pole the whole time. But it had all just sort of happened, it was spontaneous, and then Alex realized that this was it, this was her last dance performance before a crowd, and she would give them a great show. And that’s what she did.”
A few days after that Alex was released from Yale-New Haven Hospital for the last time. It was December 15, 1979, the day before my forty-first birthday.
“There’s no more I can do for her,” Tom Dolan told me. “She knows that, too. Some kids, when they sense that, give up on the doctor right away, but Alex hasn’t. She’s never blamed me for her disease. She’s a wonderful child. I just pray for all of you that she lives some time past Christmas, because I’ve seen families where the child died over the holidays, and then, every Christmas after that was ruined for them.”
Always before, when she left Fitkin 5, Alex would laugh and say something like this to Barbara: “Okay, I’ll see you the next time they make me come back to this stupid old place.” But this time, before Barbara knew what hit her, Alex said only, “Good-bye,” and threw her arms around her. To Cyd, alone, the night before, in her room, Alex said, “Good-bye forever,” and then, to a new nurse, one she liked but hadn’t grown that close to, Alex was almost matter of fact, “I’m going home to die now,” she said, “but don’t you tell my Mommy and Daddy because it’ll upset them.”
Of course, Carol called me and told me that Alex was coming home, but Carol and Chris pretended that I hadn’t been advised of the good news. So when I came back from my trip that evening Alex was hidden in a closet, and I made a big to-do of saying loudly, “Well, let me get a quick bite, and then I’ll go up to the hospital to see Alex.” And at that, of course, she popped out of the closet, cried out, “I love you,” and hurried across the room to me, her arms flung open wide.
I can still visualize that so clearly, Alex running those few steps—running!—her face shining with joy, her laughter forming hope and wishes and prayer, all three, and I grabbed her and kissed her and held her as high as I could, as if she might really be a seagull drifting away, into the fog.
Chapter 22
Carol took Alex over to school. She was so excited at that. It had been, after all, a wish. Not the real one, you understand, but a wish all the same. The whole Greens Farms Elementary School cheered Alex, and her own third-grade classmates surrounded her so that “we were squashing her,” Aimee told me, and Mrs. Beasley had to cry out happily. “Come on now, back up from Alex. You don’t want to hug all the health out of her.” It was a happy, happy time, and Alex kept recounting those moments to me.
Of health, there was precious little left. Her face was drawn and pale, dominated by the blackness of her mouth and her eyes. Carol said to me, “It almost seems now as if her whole face is eyes.” Alex had to sleep much of the time, and though once she had fought not to have to wear her nose prongs, now she welcomed them for the additional oxygen and comfort they brought her. Increasingly, she had to sleep in what almost amounted to a sitting position, propped up on piles of pillows, leaning forward on Tink, her big cuddly round lamb. Apparently, this posture helped open up her chest for an iota more of air. “You see, Daddy, when you have CF, you must sit up like this or you get all scrooged up,” Alex explained to me patiently, as if she were telling me how to play a game or put on a boot.
As always, Chris would start off the night sleeping next to her, but from then on, alternately, Carol or I would come in, move Chris back to his bed, and take his place next to Alex. Her breathing was so labored that it was actually difficult for me to sleep with all the commotion, and, listening, I was sure that it must hurt her just to breathe. Her knees were all swollen up from her “just arthritis,” and when I rubbed her back, her spine jutted out so that it seemed as if the bones must soon break through the skin. Her liver condition had worsened, and God only knows what else. This cursed disease. This evil monster. Not even Alex worried anymore about her fingers.
The worst was when suddenly Alex couldn’t get any air at all, and she would shoot up in bed, crying,” Help me! Help me!” And it was all the more horrible that there wasn’t really anything we could do when that happened. Mostly we would just run to her and console her.
“What can I do, darling?”
“Just hold me tight when I finish coughing.”
Christmas, of course, was especially hard. On the night of the twenty-third some carolers came by. Prominent among them was Joan McFarland, a professional singer Alex knew and adored, and she was absolutely, thrilled that a real pro had come to her house. Sure, it wasn’t Bobby Vinton, but it was a terrific Christmas present. I held Alex up to the window at the front door, and she was so transfixed by Joan and the other carolers that she didn’t notice my crying. Oh, she probably did. But she didn’t say anything. It was such a lovely scene, classic Christmas, the carolers bundled up against the cold, carrying candles, singing hymns. Carol and Chris stood at either side of me, and I held Alex in my arms.
Alex went to bed, happily exhausted, soon after the carolers left, and the next day was Christmas Eve, 1979. It rained. We came very close to a perfect white Christmas, but it was to be one of those peculiar winters when the temperature always got just over freezing so it rained every time it was supposed to snow.
In the afternoon we went to the children’s carol service at our church, Christ and Holy Trinity. Alex had a new dress to wear: a bright red skirt, with a white blouse and a red string tie. It was very fancy, very feminine, and she adored it. Carol had also bought her a brand new pair of patent leather shoes. Christmas Eve was one of the few times Alex wore those shoes, and she had to be carried so much, even when she had shoes on, that when we went in to see her at the funeral home for the last time, before we closed the coffin up, I noticed that the shoes were hardly scuffed on the soles.
Alex got very tired during the carol service, but she came to life again for her favorite part. There was a créche up by the altar, and every year Bruce Shipman, the assistant pastor, would call children up from the congregation, one by one, to put the Christmas figurines in place—starting with the bit players, the donkeys and shepherds, then moving on up to the stars. Alex had been especially delighted the Christmas before when Father Shipman had chosen her to put Mary in the créche.
So when Father Shipman called for volunteers, Alex whispered to me, “I’m not going to raise my hand, Daddy. I’ve missed so many Sunday schools in the hospital that it wouldn’t be fair.” I didn’t press the point, and we sat quietly and watched other children waving their hands and marching up. But at last, when it came to the final figurine, the Angel—after Baby Jesus Himself—Father Shipman ignored all the remaining petitioners, pointed to Alex, and called out her name.
Whatever reservations she may originally have had about playing a part in the ceremony vanished. She beamed, popped right up, marched smartly to the créche, took the Angel from Father Shipman,
and put it in its assigned place, looking down on the whole scene. Of course, as she came back to her seat, all I could think was that the next time Alex came down the aisle of this church, it would be in a box.
She explained things to me when she got back to her seat. “It’s sort of like a guardian angel, Daddy,” she said. “I thought it was okay for me to do the guardian angel, don’t you?”
“Oh, absolutely.”
Merry Christmas, 1979! We opened all our stockings together in Carol’s and my bed, and afterward I stumbled downstairs, barely able to see through my tears, to light the tree. All I kept thinking was that this would be the last Christmas that I would ever have Santa Claus in my house, and this would be the last Christmas that I would ever have a daughter. It was, of course, perfectly foolish and masochistic to go around—to go out of my way—thinking things like that, but that was how I was. I couldn’t help myself, and now I’m not sorry. I think Alex is more vivid to me because I punished myself with her every last this and her every last that.
We gave Alex a special gift that Christmas. Chris had discovered this puppy down at the nearest pet store. It was a little Lhasa Apso. We wrote a note from Santa explaining that the puppy was getting lonely at the North Pole, that he and Mrs. Claus and the elves and reindeer—everybody—wanted Alex to have hime. It was all worth it. We named the little thing Buffalo, and even when we put him on her lap and he rolled around and nipped at her and made her cough from all the action, it seemed a fair price to pay.
Alex herself had specifically requested a microscope (along with the usual array of pretty clothes and accessories, dolls and jewelry). I have no idea whatsoever why she wanted a microscope—it was hardly her kind of thing—but that was her heart’s desire, and, so, naturally, we got her a microscope. That Christmas, if Alex had asked for hand grenades and poisonous snakes, we would have gotten her the finest hand grenades and poisonous snakes available.
