by Frank Deford
Whatever the reason, Alex’s spoken vocabulary, her whole comprehension, moved leaps and bounds beyond the primitive block letters she was carving out at school. I was fascinated one time when Alex started off on a careful explanation of the Save the Whale campaign, including an analysis of how this affected U.S.-Japanese relations. What was especially amusing was that Alex’s friend Wendy was on hand, playing some normal six-year-old’s game with Alex, and when her friend launched into this sophisticated discussion, Wendy looked at her, utterly baffled, as if spirits or demons had suddenly infested Alex.
Whenever possible, Alex would throw in big words: “Oh, Mother”—for some reason, she always preferred the more formal title for Carol, while reserving the diminutive for me—“you look so attractive tonight, just positively glamorous.”
Telephones confound most children, like Chris. They are so taken in by the apparatus, the mechanical marvel, that it throws them off, and they are intimidated nearly to speechlessness. On the phone, for example, Chris rarely used anything but the word good. “How are you, Chris?”
“Good.”
“How’s everything at school?”
“Good.”
“How’re your friends?”
“Good.”
“Did you know the world is coming to an end?”
“Good.”
But Alex, who never gave a hoot about things—how they worked or were spelled or how to keep them neat—never let the telephone get in the way of a good conversation. In fact, since it made her grown-up on the one hand and encouraged imaginating on the other, she was more than comfortable with the device and always conducted long, intelligent conversations with it. Then, as soon as she put the receiver down, she would toddle off, a five-year-old little girl again, sucking on the same corner of her little pink “blankie,” clasping her Cher doll.
Anyway, while we were in Japan and Hong Kong, Alex dictated a couple of letters to us through Tina. They showed a normal preoccupation with missing us, but also an unusual fear that we might be harmed. Here is the first one:
Dear Mother and Daddy,
You are darlings and I love you. I hope you are having a good rest and a nice vacation. I hope God takes care of you and brings you home safely. My room is tidy. It really is. I did my chores, and I love you.
Alex
Separation from us never troubled Chris so much, but perhaps Alex heightened his anxieties that one time. By chance, she had a difficult spell, coughing up a lot of mucus—what she always called “yukky,” a very apt word that she borrowed from “Sesame Street.” Also, Chris caught on that Tina was familiar with cystic fibrosis and he asked her a lot of questions he had never asked Carol or me, or that he had nervously deflected whenever we had tried to bring the subject up with him. Where does this disease come from? How long will Alex have to do therapy? What would happen if she stopped taking her medicines? How come I didn’t get it? That sort of thing.
That Sunday afternoon, Tina sat down at my typewriter to tell us some of this. “Christian is a child caught between the emotions of an eight-year-old and having the fragile understanding of what life is about. He becomes, even transcends, Alex’s struggle: supportive, loving, the tender snuggling with her during her therapy to comfort and soothe; the wave of concern when she starts coughing; his gaze attends all her movements then, and his eyes say how much he’d like to do so much for her. His relationship with Alex is not just as a ‘brother’ in the ordinary sensed—there is no fighting, no picking on her—just a word now and then to knock her down. But then, he is the first to pick her back up.”
Exactly as Tina was writing this, she heard noises and a commotion down the street. A neighborhood high-school senior, Jeff Brown, who was especially well known to Chris because his brother Marc was one of Chris’s best friends, had come around a corner too fast on his new motorcycle and slammed into a tree. Tina ran out, and the boy literally died in her arms.
Naturally, this affected both children greatly, although in different ways. Jeff’s death made Chris face that subject for the first time. He was confused and despairing. Tina went back to my typewriter the next day and wrote: “Chris sobbed in our arms all afternoon and evening. He asked me: ‘But where does life go? What happens when someone dies?’ We talked about God, heaven and souls. Then Christian said: ‘You know, the saddest thing is that Jeff was too young to die. It goes so fast. All I can do now is remember Jeff.”
Chapter 14
And so we lived, Alex lived. Up early, inhalation and therapy in front of the TV. Television was diverting and made the time more tolerable, although seldom would Alex agree with Carol or me on what we should watch during therapy. Later on, at evening therapy, quiz shows proved to be something of a happy medium—if they put a gun to your head would you choose “The Joker Is Wild” or “The Gong Show”?—but mostly Alex’s choices lay between uplifting children’s fare—“Sesame Street,” “The Electric Company,” “The Magic Garden”—and adult junk reruns, notably “I Dream of Jeannie” or “Gilligan’s Island.” It would be a besmirching of Alex’s memory to reveal which of the two categories she preferred.
Sometimes, of course, we would do the therapy without TV, just talking or perhaps listening to records. After Alex saw Annie we bought her the cast album, and pretty soon she had virtually the whole score memorized. Alex would sing it all with a child’s battery microphone—or “mokraphone,” as she always called it.
Often during therapy Alex and I just chatted, too, so I imagine we spent more time talking during therapy than many fathers and their young daughters ever do. Once, as I was pounding on her, I idly asked Alex what she wanted to be when she grew up. She answered—and rather quickly, obviously having mulled this over before: “A princess.”
“Hey, that’s a good choice,” I said. “Fine career. Good working conditions, terrific fringe benefits. Real nice line of work.” And then I turned Alex into the next position, sideways, and started pounding another part of her chest.
The conversation soon left my mind, but, a few months later when we were doing therapy, Alex suddenly announced she had thought about it some more, and, when she grew up, “I’d like to be Nadia Comaneci.” This was, obviously, shortly after the 1976 Olympics; Alex was just turning five.
“Hey, that’s a good idea,” I said. “You’d be very famous, it would be healthy and exciting, and there’ll certainly be an opening in that line by the time you grow up.” She smiled, and soon I shifted her into a new position, one of the most uncomfortable ones, head down, as I pounded the sides of her chest. “But, Alex, why did you change your mind? The last time we talked about this you said you wanted to be a princess when you grew up.”
“Well,” Alex said, “I’ve thought about that, Daddy, and I decided I can’t ever be a princess.”
“Why?”
“Because I never heard of any princess having cystic fibrosis.”
My heart bounced up into my mouth, but I managed to carry on. “Oh, look, Alex, I wouldn’t worry about that,” I said. “There’s probably lots and lots of princesses, all over, who have cystic fibrosis, but you’ve just never heard about them. They probably just take their medicines and do their therapy so well that they’re getting better all the time, so you don’t hear about their CF.”
She mulled that over for a few seconds, then shook her head. “No, Daddy, I just couldn’t be a princess.”
“Why?”
And this time she twisted her face up and around to look at me as best she could. And she said, “No, Daddy, I couldn’t ever be a princess because my crown would fall off all the time whenever I did my therapy.”
And she had me. I just returned to pounding her, trying not to cry out loud.
Then, each time after therapy came all the pills, the apple sauce, the agonizing meals, pleading with her to take another bite—please just one more, half a bite, a nibble, anything. And, as Alex got older she would tire more easily, struggling to breathe, and we would try and get her to take n
aps. But often she fought that, too, because none of her friends took naps, and she didn’t want to be different. More and more, and quite naturally as she grew older, Alex worried about being one of the girls. Going into the hospital always produced the additional concern that her friends would forget her while she was away.
Of course, and God bless them, it worked the opposite way. When Alex had to be hospitalized, the teachers always arranged class projects, everybody writing her cards and letters, taping messages to her, drawing her pictures, making up games for her. Then, when she did return, they welcomed her back with the truest affection. In the final couple of years, I would also make it a point on my visits to the hospital to take Alex down the hall, where she could call a school friend from the pay phones.
Alex’s internal medications were kept in see-through plastic bags that hung from a pole, with the tubes going down into the needle stuck into her hand. The pole—we just called it her IV pole—was on a little stand, with rollers, so that she could be mobile and wheel it about the ward. Whenever I came to the hospital, I would have Alex step up on the little stand, a couple inches off the floor, and I would push her around. We’d go all over the ward, into the playroom, in to see her friends, and then down the hall by the cafeteria to the pay phones, where she could call long distance back to Westport, to Wendy or Aimee, Robin or Tammie.
I don’t care what excuses they give, it is sinful that hospitals don’t figure out a way to let young patients’ friends visit them—especially the kids who must go in regularly, or for long spells. Whatever infectious germs Alex might have picked up from her little pals would have been compensated a hundred times over by the psychological benefits such visits would have given her.
At midyear of her first-grade year, Mrs. Peggy Rabut, Alex’s teacher, wrote this report. “Alex’s plucky spirit is a fine example to all of us. Her cheery greeting each morning, her enthusiasm for all our projects and activities, and her willingness to help herself as much as possible are an inspiration. It is a privilege to have Alex in our midst.”
Already, the kids, too, were beginning to understand how game Alex was, and how lacking in self-pity. A classmate who was far from being Alex’s best friend wrote this to us after she died:
This is what I remember of ALEX. Alex always smiled. Even if she was in pane. She always was nice to you. She meant so much to me and now she is gone. Gone till the day we die. She was always happy. And every day that she was alive was a bleasing. Alex was almost never frowning. She was never mean. She did not use her sickness to make people like her. Everone liked Alex because she was Alex. And she was so loveaboale. She made Many Happy Wishes.
Carrie Wanamaker
Sometimes I think Alex cared so much for everything around her because she sensed that it was all she would have—that her elementary school would be junior high and high school and college, as well as her job, her husband, and her family—everything outside of the home she lived in for all her life. She embraced school with a passion, desperate to take it all in, pulling the others along as she did. After Alex died, Mrs. Rabut wrote us of that first-grade year:
I feel very blessed to have been touched by Alex’s life. The year she was in my class was probably the most memorable in my teaching career. It was a group of children who expressed love and consideration beyond what one normally expects from children of that age. There was a unifying force at work, and at the time, my only explanation was Alex. She commanded such respect on the part of her classmates by her determination to participate in every activity, to be as self-sufficient as possible, and to make the most of every minute of her day. We will all miss her—but in another sense, she will always be part of our lives a—shining example of courage, joy and hope.
Chapter 15
On February 20, 1978, when Alex was going on six and a half, in the middle of the first grade, I wrote this:
“Alex went back to the hospital today. We had hoped so much that she could avoid that till the spring. She is the poster child in Connecticut for the Foundation and she has a big date in New Haven early in March with the Aetna World Cup. Aetna has made CF the official charity of the World Cup, largely because the Association of Tennis Professionals has honored the Foundation the same way—and that all came about because some of the tennis guys knew about Alex. So it really is her big time. She’s going to get all dressed up and present the trophies, and she is already looking forward to the occasion—and the exposure, too! It’s on TV, even if it is just public TV. But the most exciting other thing she’s done as poster child is pose with a ninety-year-old man for a newspaper photo for a CF golf tournament, so this is a big step up.
“Also, just before the World Cup, we’re all going down to Florida for a few days, where I’m working on a baseball story, and we certainly didn’t want Alex to miss out on that, so we decided we better send her up to Yale-New Haven today, to get her regular ten-day treatment out of the way.
“Maybe it’s just that we didn’t have as much time to prepare ourselves for this hospitalization, as we usually do. Maybe it’s just that we’re all down because it’s the middle of an especially bad winter. Maybe it’s just the accumulation of a lot of things. But, whatever, Alex’s leaving upset Chris so much this morning, more than he ever would have let on in any traditional way. His behavior was so manic, so hyper—and it was even anti-Alex in some respects. That covered his fear, I guess.
“I think Chris well understands the implications of his sister’s disease, even if he might never literally comprehend exactly what it means when I use the word incurable. Death is such a difficult concept for any child to deal with. But then, I suspect the same of Alex’s own even younger mind. If you told her flat out: Alex, incurable means this, that you are going to get worse and worse, there will be more pain and less of a normal life, and nothing—nothing!—can be done for you, and you must die very young without having a life to plan or knowing the simple joys of growing up in this world; well, if you told her all that, point-blank, and drove it home, she would surely break up on the spot.
“But the thing is, I know that she already knows all that. Yes, she senses it quite well, I’m sure—and then she goes on, managing nonetheless, somehow filtering only some of that comprehension into her everyday mind.
“Now, we’ve known all along that soon enough there would be one more major step down for Alex, but when it does happen, you are never prepared for the harshness of the inevitable. So it is now. And what madness, too. Now get this: the problem this time was signaled by Alex bleeding internally from doing her therapy. The bleeding itself was really not so bad, so crucial. It was just some little vessels bursting somewhere because of all the pounding. But it means that for the vessels to heal, for no more of them to burst, we wouldn’t be able to do the therapy. And if we can’t do the therapy, the mucus will settle and collect, and the goddamned pseudomonas will spread.
“And here is the extra irony: As soon as we stopped doing the therapy, Alex started putting on weight. Talk about insanity. This cursed disease is the Devil’s own, and all the worse for me that it is my child who has it and not me.
“When Alex first bled the other day, it scared her so. Blood! And honestly, even I wasn’t prepared for that. As sophisticated as she is, too, in these matters, I didn’t know whether she was only a little girl for the moment—‘Blood! My Blood!’—or whether she was merely frightened that it was something new and unpredictable that she had to contend with. We had not prepared her for blood. Nobody had told us to look out for blood.
“The next day Alex told me that she was convinced this must mean the beginning of the end of her cystic fibrosis. How’s that? I asked. Well, she explained, the blood had obviously replaced the yukky, and tomorrow or the next day, there would just be spit to replace the blood. Spit is what she said. Spit. I tried to tell her, as gently as I could, that I hadn’t heard anything about that and possibly that wasn’t the case, and she nodded, sadly. It had seemed like a good idea. Then I went away to
cry.
“Carol bought Alex a new dress for Valentine’s Day. It’s white with red trim. Alex adored it and wore it constantly. Then, a couple of days ago, she had it on and she was parading all about the house with her ‘mokraphone,’ singing and dancing. That was when the blood came up again.
“She called out. It was a horrible yell. I was in my office, and it pierced me. I jumped up and ran to Alex but Carol had already reached her. I stopped in my tracks. The blood was all over, worse than it had ever been. Alex had dropped her mokraphone and was catching the blood in her hands, crying in fear, shaking.
“This destroyed Carol more than anything that has happened before. Oh, she was very controlled with Alex, very nurselike. She took care of the situation, calmed Alex down, even made sure to get her into another bright new dress-up dress, wipe the blood off the mokraphone, and give her that back. Alex didn’t have the heart for that anymore, though, and only went off to her room with her dolls. So Carol came in to see me. I was just staring out the window at the snow—the white snow, like a white dress without blood on it.
