Every year of Alex Deford’s life was hard. But the eighth—her last-was hardest of all. While her friends were attending third grade, Alex was shuttling in and out of the hospital, forced to undergo painful “therapy” daily in a vain attempt to counteract the cystic fibrosis that was squeezing the air from her lungs and the life from her tiny body. Despite this, until the very end, she found the energy to protect her loved ones from the sadness that was consuming them. In this final excerpt from Alex: The Life of a Child, which is being published this week by The Viking Press, her father, a journalist, writes about Alex’s last few months.
Alex finally got out of the hospital and was able, officially, to finish the second grade, but by now she was so far behind that we started having Marlayne Schaeffer, who had been Alex’s dance teacher, come in and tutor her. Alex was, as ever, conscientious, but it was growing more difficult for her to sustain any effort.
“Sometimes,” Marlayne remembers, “she was obviously just so tired, but other times I came to realize that she was only being gracious when she said that, that she was really just in great pain, but didn’t want to burden me with that knowledge.”
By now, even when Alex was not, for the moment, sick, we were on edge, poised, never far from trauma. Every day there was a crisis atmosphere, for she would so often plan something simple—to go see a movie, have a friend visit—and it would have to be canceled at the very last minute because she showed a high fever. Sometimes I thought that, no matter how many ways she could get sick, it would be a broken heart that would kill her. By now the emotional deprivations were growing as great as the physical.
As the summer wore on, the pain increased and Alex had to be denied so much that even her spirits began to flag. A few months before, she had initiated a conversation about the general subject of illnesses, why some people get them and others don’t. That was about as close as she had ever come to cursing her luck. But even then she hadn’t approached the matter directly. Instead, the question she posed was, “What is the worst disease in the world?”
We discussed the matter for a while. On the one hand, I didn’t want to give Alex’s disease short shrift and make light of what she suffered; but on the other hand, neither did I want to make cystic fibrosis sound so bad that it would depress her. Finally we came to an agreement that the worst disease of all would be one that left you completely paralyzed. There had been a boy from South America in the Yale-New Haven Hospital who could hardly move anything but his eyelids, and he obviously had left a great impression on Alex. “Don’t you think that would be the worst?” I asked.
She thought for a time, and nodded. But then, very quickly, she looked directly at me. “Then what’s the second worst?” she asked.
I couldn’t walk any more tightropes that day. “Well, what do you think, Princess?”
“Oh, I think I know,” she said, and she only smiled at me for trying to be kind.
By summertime, though, Alex no longer felt she had to be evasive about such matters. She had more pain all the time and hated the nose prongs that she had to sleep with now so that she could get more oxygen. It was obvious that she would soon have to go back to the hospital; in fact, we postponed it for a week or so in order to allow her to make the first day of third grade.
There was a point beyond which even Alex’s goodwill was tested, and that was reached regularly now, especially when we did therapy. Obviously, no one is going to enjoy being turned this way and that while somebody pounds on you, but Alex was as good at accepting that as anyone you could imagine. When she did complain, it was more in the nature of any kid trying to get away with something, like Chris asking why he had to eat carrots or why he couldn’t stay up later. So it was: Why do we have to do therapy now? Can’t we skip this one? Let’s finish it later. But really for the first time in any sustained way, that summer Alex began to complain about the very nature of the therapy. Soon, and almost every time, she was screaming at Carol or me: “You’re hurting me, Mother!” “Please, Daddy, stop now, please, please. This hurts!”
But she was able to go to school that first day, and I was waiting at home when she got off the bus and began to struggle up the driveway. I ran out to meet her and, under the pretext of hugging her, picked her up and carried her the rest of the way in. Then we sat down and discussed all the things any parent would want to know about the first day of school: Where was your desk? How did you like your teacher? Did you meet any new friends? And Alex answered them all with excitement and enthusiasm. I doubted that she could possibly last out the school year, but here we were talking about a grade, about a spring that would surely never come for her.
And yet she wanted and planned to be a part of her third grade. “Daddy,” she said, “do I really have to go in the hospital tomorrow? Please.”
“Oh come on, Alex, you—”
“I won’t argue about my therapy. I promise. Please, don’t make me.”
“You’re not being fair, Alex. You know you really were supposed to go in a few days ago, and we kept you out just so you could go to school today.”
“I have to go?”
“Yes, Princess, you have to. Don’t get mad at me.”
She nodded then, and came over and sat in my lap. “Can I tell you something then?”
“But I don’t think you’ll like it.”
“Well, try me.”
“Okay. I’ve stopped praying, Daddy. I mean, I’ve stopped praying for a cure…a cure for my disease.”
I didn’t protest. I just shook my head in understanding. “I can see why.”
“Sure. You’re always way down in the dumps whenever you have to go back in the hospital. It’s tough for you now. I know. Is it okay with you if I keep on praying?”
She hugged me and said that was all right. We held each other for a long time then, and when I cried, I was quick to whisper to her that I was just so sad that she had to leave her school and go back into the hospital. Finally, when she pulled away from me, she said: “Daddy, do you remember that time we talked about the worst disease of all?”
“Yeah, I remember.”
“It’s cystic fibrosis, isn’t it?”
“Yeah, I guess it is,” I said.
“I thought so,” Alex said, and we both nodded and cried some more. “See, Daddy, I’d pray if I could see something, just something, but”—and just then she happened to glance down at her fingers. “Daddy, look at my fingers now. They’re even worser.” They were clubbed from lack of oxygen.
I took them and kissed them and held them so that she wouldn’t have to see them and be reminded.
“You know Crissy?” she asked after a while.
“You mean the other little girl in the hospital with CF?”
“Sure, I remember Crissy. She was nice.”
“Do you think she’ll be in the hospital this time too?”
“Oh, I just don’t know, Alex.”
“I think she probably will be,” Alex said. “She’s got this disease real bad too. Me and Crissy have it worse, don’t we? She has real bad fingers too.”
“Yeah, I know,” I said. “Some kids with CF don’t have it so bad. Some of them really just have problems with their stomachs.”
Alex’s eyes widened at that. I guess I’d never told her that before. “Oh, they’re so lucky, Daddy,” she said. “They’re so lucky.”
“Yeah,” I said, agreeing that it sure was lucky just to be a little bit incurable.
“But I’ll die,” Alex said. It was the first time I had ever heard her say anything like that. And it was a statement, too. She had obviously worked this out so that she would be presenting the matter, not asking me about it.
“Well, sure,” I said. I’d been prepared for this for a long time. “You’ll die sometime. But I’ll die too. If there’s one thing we all do, it’s die.”
“But you’ll be real old,” she said.
“Not necessarily. I mean, I could die in an accident anytime.”
Alex threw her arms around my neck. “Oh, my little Daddy, that would be so unfair.”
“Unfair?” I said. Unfair is just what she said.
“You don’t have a disease, Daddy. You shouldn’t have to die till you’re real old.” And then she hugged me as hard as she could.
Alex already understood that her time was fading, and there was much she must do for herself. Just before her lung collapsed late in September, we had traveled to Baltimore to visit my parents and help celebrate my mother’s birthday. It was a grand family occasion, because my brother Mac, who is Alex’s godfather, was also there with his family: his wife, Zehra, and their little son, Benjie. This was extra special, because Mac spent a great deal of time abroad. At the time he was a Foreign Service officer, and now he’s with Merrill Lynch’s international division.
He’s been stationed in the far corners of the world: Jordan, Korea, Argentina, Vietnam; he met Zehra when he was posted to Jidda, Saudi Arabia. She’s Turkish, and Alex was always especially taken by Zehra, exotic and sweet. And so on this trip Alex cornered Zehra while she was straightening up in a bedroom at my parents’ house.
“Zehra,” Alex said, “I want to ask you something.”
“Yes, of course, what is it?”
“Is there a God?”
Zehra was, to say the least, staggered. Among other things, she’s a Moslem, and the last thing she wanted was to start leading this little Christian astray. “Well, I think so,” Zehra ventured.
“How do you know?” Alex asked.
“I don’t know. I just feel sure there is. I talk to Him when I need Him.”
“You do? How?”
“You know, Alex, praying.”
“Oh,” she said. “I do that too. Do you think He’d listen to me?”
“I think He listens to everybody,” Zehra said, and nervously she started puttering about again. Alex sat down on the floor and watched her in silence. Zehra didn’t understand that Alex had carefully selected her for these questions. She was both a good friend and family, and Alex liked her, so she could ask Zehra the questions she wouldn’t dare ask Carol or me. After a while Alex spoke again. “Zehra?”
“How do you die?”
Zehra stopped her cleaning up and turned to face Alex. She would deal directly, the best she could. “It’s mostly just like going to sleep,” Zehra said. “All of a sudden, though, you aren’t in your own house. You’re in God’s house.”
“That’s in Heaven.”
Alex thought about that for a while. “Are there toys there?”
“Oh yes, lots and lots.”
“But it would be awfully lonely without your family, wouldn’t it?” Alex said. There was no doubt from the way she said that, that it would be lonely because she would surely be going first.
“Oh, no, Alex, everyone will be there soon enough,” Zehra said.
“You too?” Alex said. “Mac and Benjie? Grandmommy and Granddaddy?”
“Everybody. But before they do get there, you can always look out through a window in Heaven and see everyone down here that you love and you miss.”
“Sure you can, Alex. Or otherwise it wouldn’t be Heaven.”
Alex thought about that for a moment, and then she got up and thanked Zehra and left her there to finish cleaning up.
The first time Alex’s lung collapsed—a pneumothorax, it is called—she was given a large dosage of painkiller, and it really knocked her out; she slept for hours and was groggy many more. Thereafter, even though she was frightened of pain, she seemed more frightened that she might never wake up, and so she told the doctors only to give her a local.
We did not know it at the time, but this would be the last occasion when Alex would—could—have the tubes inserted to reinflate her lung. Carol and I and Alex feared that it would keep happening, again and again, the final cruel indignity, but what we did not know was that, after this time, Tom Dolan, her wonderful doctor, doubted that her body could stand the trauma of another cut. There was so little left of her.
And so I carried Alex into her treatment room. By then she had prepared herself fairly well, but as soon as she saw that stark table where she was to lie and receive her shot and her incision, she stiffened, and she was the little girl again. “No, not yet! Not yet!” she cried, and she clung to me as tight as ever she had.
I remember noticing that both nurses turned away from us at that moment, because, for all they might see, day after day in a hospital, there was such an awful intimacy to Alex’s gesture that they could not bear to intrude on us. I only held Alex and tried to comfort her more.
And, in time, when composed herself, she said: “All ready now.” And so she was.
So I started to lay her down where they would cut her open. And in that moment I could not hold back any longer; one tear fell from all those welling in my eyes. And Alex saw it, saw my face as I bent to put her down. Softer but urgently, she cried out: “Wait!” We all thought she was only delaying the operation again, but instead, so gently, so dearly, she reached up, and with an angel’s touch, swept the tear from my face.
I will never know such sweetness again in all my life.
“Oh, my little Daddy, I’m so sorry,” is what she said.
One nurse turned and bowed her head and began to sob. The other could not even stay in the room. She ran off to compose herself. It was some time before we could get going again.
First, they put all this pumpkin-colored soap over where Alex was to be cut in the chest. I held her hand. Then they brought out the needle, a huge horse needle. I squeezed her hand, and she squeezed mine back, harder, harder, as they jammed it deeper into her. She cried. And then they started to cut her. Can you imagine what it is like to be with your child when they are cutting open her chest?
And all for nothing, too. I knew that. It wasn’t really going to do any good. It wasn’t going to save her. It might not even help her. All we knew for sure was that it would hurt her. But it had to be done. It had to be done, so I held my baby’s hand, and the doctor cut through the orange goo as if she were a jack-o’-lantern being sliced up for Halloween, and then he brushed away the blood, stuck a tube in her, sat back and said, “Okay.”
“It’s over,” I said.
Alex said: “Thank you, Daddy.”
Later, Barbara Arends, her favorite nurse, told me: “Alex wasn’t that specific about finding out what was happening to her until after the chest tubes.” But at that point Alex seemed to grasp the utter hopelessness of her plight. And yet, how unfair it was, that as she could not live life like the rest of us, neither could she even talk of death to those closest to her. You see, in many ways she felt she had to protect us—her family—more than we her.
Alex knew. Barbara recalls episodes when Carol was especially upset and morose and Alex would then purposely act her worst, very fresh and bratty, so that her mother’s emotions would be diverted and she would grow annoyed at Alex, rather than sad. One time Barbara remembers that Carol was fixing Alex’s hair, fighting to hold back the tears as she made her dying child pretty. Alex suddenly started making such a nuisance of herself and Carol finally got so irritated that she said, “Alex, if you don’t stop acting like this, I’m going to leave this room.”
And Alex immediately did one more exasperating thing, which left Carol with no alternative but to storm off 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 that I didn’t want her around, it would’ve hurt her. This was best for her. I’ll be all right when she comes back.”
A few days after that she was released from Yale-New Haven for the last time. It was Dec. 15, 1979, the day before my 41st birthday.
“There’s no more I can do for her,” Tom Dolan told me. “She knows that, too. Some kids, when they sense that, they 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 the hospital, 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, “Goodbye,” and threw her arms around her. To Cyd Slotoroff (her good friend who played guitar for the kids) alone, the night before, in her room, Alex said, “Goodbye 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 or Daddy because it’ll upset them.”
To be honest, I really don’t think that Alex believed in Santa Claus anymore. On the other hand, I also don’t think she saw any sense in getting deeply involved in that issue. I think, when you’re a child dying, it is quite enough worrying about God and all that, without making too much of a fuss over Santa Claus. Besides, Alex knew this was going to be her last Christmas, so why not keep the string intact? She let herself go on believing. And she wrote a letter asking for a puppy.
Chris and I went down to the pet store and bought the puppy, making arrangements to have it stay there until Christmas. Then, the last day before classes let out for vacation, Carol took Alex over to school. She was so excited at that. The whole Greens Farms Elementary School cheered her, and her own third-grade classmates surrounded her so that “we were squashing her,” Aimee, one of her best friends, 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 as if her whole face is eyes.” Alex had to sleep much of the time, and where 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 now, 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.
The worst was when suddenly she 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.”
It was four days before Christmas when Carol said, “I think we had better bring that puppy home today.”
At first I didn’t want to. I wanted to think that at least we could make every effort to have a Christmas as typical as possible, and also I thought of all those awful newspaper Wirephotos I had seen through the years, of Christmas trees set up in August and September for some child who would not live till Christmas. “Let’s wait, please,” I said. But I slept with Alex that night, and it was a frightening experience, so when I got up the next morning, first thing, I wrote her a note from Santa, explaining that the puppy was getting lonely at the North Pole, and he and Mrs. Claus and the elves and the reindeer—everybody—had discussed it, and they thought it would be a good idea to bring him down to Westport a few days early so that he could be with an especially good little girl.
It was all worth it. We named the little thing Buffalo, and even when we put him on her lap, and he rolled all around and nipped at her and made her cough from all the action, it seemed a fair price to pay. On Christmas Eve, Alex said she thought she ought to write Santa a thank-you note when he came back with the regular Christmas bounty. She left it down by the tree. It said: “Dear Santa, Thank you for the puppy. Here’s some milk and cookies for you. Love, Alex xoxoxxxxxoooxxxx” Alex usually wrote at greater length. Then I noticed these initials down at the bottom of the letter: “AD:cmd”. Chris had written the note for her. She had grown too weak own to write out a few lines.
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.
Our good friend 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, 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 she tucked Alex in, Tina 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.
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.”
“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?”
“Sometimes I think soon there’ll be nothing left of me, nothing at all, and then I’ll just float away.”
“Float away?” Tina asked.
“Yeah, like a leaf in the wind, or maybe a balloon—phffff. Maybe I’ll just float oft like a balloon. Just like that.” And Alex sighed again. “You know what’s really scary?”
“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 Chris again. And you know what else is scary, Tina?”
“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.
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 now the compressor didn’t even bother me when I slept in with Alex, but this night 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, so finally, around 3:30, 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 7 before I awoke. I went downstairs to feed the dogs, and there—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—he was sleeping at a friend’s house down the street—but now, around 8, Alex began stirring, and we phoned and asked that Chris be brought back right away. He still wasn’t certain what the 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 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 pro-pare 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, Chris, my Chris!” They chatted for a while, and then Alex saw how hard it was for him, and she suggested that he go play. She was right. I don’t think it would have been good for a 10-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 to 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 he would come in and tell her all the mundane boyish things he’d been doing for the past hour or so.
Alex would doze off now and then. Midway through the morning she asked me to go out and get her root beer. By the time I got back from the store, she had drifted off again. 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 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—it would be 1186.5 hours or 1238.2, or whatever. Now, when I looked, the total figures read 1306 and something.
Right away it came to me: 13s. Double 13s are coming up. The raven, now this. Alex will die when this machine reaches 1313 hours. I calculated that to be around 2:30 in the afternoon.
I don’t want to die today,” Alex said then. She wasn’t being difficult. She knew she was going to die. She just said she didn’t want to die today.
Carol said, “You know, Alex, when you die, you can see God and talk to Him, and you can tell Him all about us. And we will always be together, all four of us, because you’ll keep an eye on us, and then we’ll meet again in Heaven.”
Alex took that all in, turning it over in her mind. She understood perfectly now, but still, right to the last, I suppose, she didn’t want to absolutely, completely admit the whole truth.
And then, as the day wore on, as the last of her life got away from her, Alex spoke less and less of anything. She was often uncomfortable and occasionally there were moments of unbearable agony, but they were brief, thank God, and never again did she suffer sustained periods of great pain, as she had the night before. Still, increasingly, it was difficult for her to make the effort to talk, and so mostly now she only listened.
Carol took charge. She began to review Alex’s life. I joined in. We never orchestrated this; we never plotted it. It just came naturally. After that, we only really talked with Alex of two things: her life, and what we could guess of death. It didn’t seem to be the time for small talk, when your child was dying.
So we brought up as many people that Alex knew and loved as we could recall. We talked of the things she had done with them, and of the joys she had given them, and they her. We talked of all the places she had been and all the wonderful things we had done together. We talked about her school and about her room and her house and the dogs Chaucer and Buffalo, and we even talked about the hospital and all her friends there. We talked about all the things Alex liked. What was her favorite song of all? She gave that some serious consideration and finally decided that it was I Don’t Wanna Play House, by Tammy Wynette. I went downstairs and found it and put it on her record player. Then we talked about the Broadway shows she had seen, and Benny Hill, who made her laugh, and all the dancing that she loved. Well, what we talked about was love. Love, love, love, Alex. We kept saying it.
And then we talked some about Heaven, too, about God and souls and angels. Carol told Alex that angels didn’t have cystic fibrosis, so they can dance and play among the clouds in Heaven, all day, every day, and Alex smiled and managed to say yes, she already knew that, that she even had it on good authority that some angels wore tutus.
“Tutus!” said Carol. “Why some angels wear tutus just like that shiny one you have with all the sequins.”
“Really?” Alex managed to say.
“Oh, yeah. Angels can get whatever kinds of tutus they want.”
Alex nodded, and then she smiled. “Mother?” she said.
“What about wings?”
“Well, all angels have wings.”
“I mean, will I get mine right away?”
“The first day,” Carol said. “And then you can always be our guardian angel and watch over us.”
And once more Alex smiled at us. But soon, again, those bursts of pain in her chest began to strike her, and she rose up from where she lay, her head on Tink, crying out to us. So often we had heard this, but now it seemed even more anguished, more shrill. Perhaps, I suppose, because she was afraid that this time the pain would also include death in the bad bargain.
Not long after that Alex became passive. When her brother came again around 2 o’clock, she forced her eyes open as soon as she heard him coming up the stairs, and that was when she said, for the last time: “I love you, Chris.”
That slight effort, to turn and speak, cost her so much, though, that when, shortly afterward, she wanted another sip of root beer, she could ask for it only by turning her head toward the glass and signaling for it with her eyes. Carol held the straw to her lips, and Alex managed a sip. And, for thanks, one more smile. That was her last smile. She wasn’t ever able to muster one again. Finally, the cystic fibrosis had even taken the smiles out of Alex. Now, every conceivable effort had to be given over to breathing. She was so worn down, poor thing. Carol and I held her, first one of us, then the other. We kept telling Alex about love. That constituted the conversation.
About 20 minutes past 2, the hour counter on the back of the oxygen compressor turned to 1313. About a half hour later, Alex suddenly shot up. There was no cry this time, no energy left for that, but instead, there was upon her little face such a shocked expression, her eyes so full and wide, that both Carol and I were sure that this must be the end.
I believe it was meant to be, too. But something held Alex with us for just a little more. She had never wanted to be left out of anything, and yet she was robbed of so much of life that I think she was at least determined, as much as possible, to see what it would be like when she died. She found out it was like this: She fell onto my chest, and Carol clutched her hands and told her how much we loved her and always would.
So that is how I die: in my father’s arms, my mother holding my hands. That is how.
So Alex knew now. In time she lay back on Tink.
She just lay there, and I reached under her gown and rubbed her back. Oh God, the backbone stuck out so. You could hardly believe it, it was so far out. Skin and bones. That was all that cystic fibrosis had left of her now.
A few minutes passed. There was nothing Carol and I could tell each other, even with our eyes. We were quiet now. Suddenly, Alex bolted up again. I would have known, without any doubt, that this was death in all its power, but there had been the false alarm shortly before. Alex fell forward on my chest, her little body tumbling over my right leg, which was crooked up on the bed. Carol took her hands once again and, exactly as before, told her how much we loved her and what a wonderful person she was.
And this time, Alex raised up and away from me, but slowly, with purpose, not jerked by any pain or any forces but her own, until she was almost fully sitting up, somehow supporting herself, and she looked directly at us, her eyes shifting from her mother to her father, so that both of us felt them boring into us.
I’m sorry, but this is how a child dies.
I can see those eyes, this moment, still. I see them constantly. But I could never describe them properly for what they meant, what they told. They were just absolutely wide open, so that even in death a little light could come in, and what they seemed to say was: Can you believe it, Daddy? Can you believe it, Mother? It’s really happening. Right now. Right now, I die.
Oh, and how they also seemed to call to us with such unbelievable love.
And, at that, still just as open, they were also blank. The life had floated away, free. Alex’s body stayed up for an instant or two more, but she was already up therewith God.