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  Alex

  The Life of a Child

  Frank Deford

  FOREWORD

  The life of Alexandra Deford is a story of courage and sadness … it’s about a young girl’s battle with cystic fibrosis, the number one genetic killer of children.

  The events in Alex’s lifetime, are captured by her author-father, Frank Deford, chairman of the board of the Cystic Fibrosis Foundation, in this heartwarming book.

  While the toll of cystic fibrosis is tragic, the story of Alex is a story of hope … in that one day children won’t die of this fatal disease.

  In a dynamic sequence of events that spanned the fall of 1985, genetic scientists made amazing advances towards finding the cystic fibrosis gene. Scientists successfully narrowed the search for the fatal gene from the body’s billions of pieces of genetic materials (DNA) to less than one-tenth of one percent of the body’s total DNA. This research breakthrough brings the promise of finding a cure and new research treatments for cystic fibrosis. Thus making cystic fibrosis the “polio of the 80’s.”

  As you will read in this book, Alex had a dream that one day her disease would be cured. Thanks to supporters of the CF Foundation, her wish isn’t that far away. There is still much to be done before that happy day, but Alex can rest assured that it will be done!

  Dear Scarlet,

  Now, when you’re old enough

  to read this, you will know

  all about Alex.…

  Alex barely lived eight years. That’s not long at all. Why, looking back, it seems as if it took her much longer than that just to die. The dying seemed to take forever. But still, even for all that, for all the time I had to prepare myself, when the end finally came, I wouldn’t let it. At the last, I denied that Alex could die. We knew she was going to die, knew she had to, knew there was no hope, even knew it was best. But still, I started telling myself that it was a couple weeks away.

  It’s different, a child dying. It isn’t just that children are supposed to keep on living. Imagine being eight years old and dead. It isn’t just what everybody always says either—that a child dying is unnatural. It’s much more than that. Old people die with achievements, memories. Children die with opportunities, dreams. They carry the hopes of all of us when they go off. Probably a child’s death is more intolerable for us than for the child. Keep it two weeks away and you have some chance.

  Carol and I were actually sitting downstairs, talking about it before going to bed, being straightforward and adult, at precisely that moment when Alex began to die in earnest. “Two weeks,” I said. “I feel now she’s got about two weeks to go.”

  “Yes, that’s just about what I think,” Carol said. “Probably sometime in February.”

  “Yeah, I want to spend more time with Chris, getting him ready for it. I think I’ll have a long talk with him on Sunday.”

  And that was the instant when Alex called out. She had been asleep, but she awoke in pain, unable to breathe. “Help me! Help me!” she cried.

  Carol sprang to her feet and dashed up the stairs. I didn’t move. I knew what Alex needed and that Carol could provide that, as best she could. Help me! Help me!—it was a part of our lives by then. But this time was different as well. I knew that straightaway, as sure as Carol felt it too. It would not be two weeks after all.

  It was not even a day. Alex died in her bed the next afternoon, in my arms, holding her mother’s hands.

  Later, a doctor came and signed the death certificate, which is filed somewhere, and then the people from the funeral parlor. Carol asked them and our friends to wait in another part of the house, and then I picked up Alex from her bed and carried her out of her room and down the stairs for the last time. Carol and Chris walked with me, with Alex. We left together as a family of four.

  That night, by myself, I retraced my steps out the front door. It was incredibly bright out. That was not just my imagination. There was not a cloud to block out a single star; the whole sky positively sparkled. I heard later that it had something to do with the moon and a unique atmospheric condition. Possibly; believe what you will. I only saw that it was extraordinary and was sure that it must have something to do with Alex. And so I walked about, staring up at those starry heavens, where she was spending her first night.

  And, as I walked, I poured out a bottle of root beer on the lawn all around our house. I don’t ever remember Alex caring for root beer one way or the other, but, for some reason, she had asked me, that morning, to go out and get her some. How odd that felt, to go to the store. There were all these other people in the store, going on about their lives, buying things, standing in line, living a Saturday. Alex died on a Saturday. It was so strange, what went on in my mind. I kept thinking there must be something wrong with everybody else in the store, because they weren’t buying root beer for a child of theirs, dying back at the house, a few blocks away.

  So that’s why I had the root beer bottle that night, walking around the house, pouring it out. Alex had only managed a few sips before she died, and I’d bought her a whole quart bottle. Or a liter. Quart or liter. I don’t remember whether there were liters yet, in January 1980. But, anyway, there was a lot left, and I couldn’t just put it back in the refrigerator, next to the milk and the orange juice. So, it was in the manner of some consecration that I walked about, spreading what was left of the root beer upon the earth where Alex had played.

  It was bitter cold and still, the way most winter’s nights with clear skies are, and now, finished emptying the bottle, looking up one more time, I suddenly remembered one of my father’s favorite quotations, from Shakespeare. He had recited it to me when I was a boy. It was Juliet, talking of her love:

  When he shall die,

  Take him and cut him out in little stars,

  And he will make the face of heav’n so fine

  That all the world will be in love with Night

  And pay no worship to the garish Sun.

  Much as I loved to hear my father say that, I could never really visualize the imagery until that night, when I could see Alex up there, cut out in all those stars. So that is the way the day ended when my child died. I said good night to the stars, put the root beer empty in the trash, and went back into the house where the three of us lived.

  Chapter 1

  Even now, so long after she died, even now it’s still difficult to go through all the little objects of her life that she left behind. There is not that much that a child leaves, and Alex lived such a short time: small parts of 1971 and 1980, and all of 1972 through 1979, inclusive. She was born, diagnosed, lived all she could, and died before there was time for her to be laden with all the formal artifacts—letters and numbers and citations and all that grown-up bric-a-brac that comes with adult convention and ceremony. But there is not that much for a child. Why, some stranger coming across Alex’s stuff would think she must have spent most of her life drawing.

  What possesses us to hold onto these cream-colored papers our children scrawl on? I go through sheet after sheet that she attacked with crayons when she was only in nursery school. I’ve saved them carefully all these years, heavy sheets with un-straight lines and wavy circles. “That’s absolutely beautiful, Alex.… What is it?”

  Pause. Young children never have the foggiest notion what they might have drawn. They have drawn un-straight lines and wavy circles. But they humor us. “That’s a car.” Or, “That’s Captain Kangaroo talking on the telephone in his pajamas.” And then we rave at their imagination.

  Reviewing her work, I can see that Alex d
id begin to develop some specialties in the art line as she got older: houses (always with smoke curling out of chimneys), bunny rabbits and dogs (you could tell them apart because bunny rabbits were the ones in spring), flowers and trees, both more resembling lollipops, and rainbows. Usually across the top was a ribbon of blue, the sky.

  This is, all in all, a very happy collection of items she chose to celebrate, but I am reluctant, even now, to draw any conclusions. When our son, Chris, was in nursery school, we received a very solemn phone call from the teacher asking if we could please come and see her. It was extremely important. Worse, when Carol and I arrived, panicky parents, there was a child psychologist who had been called in too. He was obviously deeply troubled, and he and the teacher both tiptoed around, asking a lot of careful questions about our home life. It was soon apparent to me, too, that the psychologist was annoyed that we wouldn’t admit to any traumas, beatings, or orgies at our house. Finally, he sprung the trap on us. He brought out a drawing Chris had done on the cream-colored paper. It was of a huge, clawed, fanged monster, spitting bullets and fire alike. Terrific picture; best he had ever done. Also, the monster was stepping on a house. Whose house, asked the psychologist. My house, said Chris. The implications were clear. What did I think, the psychologist asked me.

  I said I thought that a monster movie Chris had seen the other evening on television had made a considerable impression on him.

  I still have that drawing, too. And all of those that Alex did. Even if they don’t mean anything, there isn’t much you can save that your child did, even when it’s important to you, even when you know she’ll die and won’t ever obtain all the official clutter that grown-ups do. Of course, there are home movies and a lot of snapshots. These form a pretty complete catalog of Alex’s life, too; except because Carol and I are not real camera addicts, the pictures always come in clusters, a roll now, the child all in the same outfit, and then another six months later, all in another same outfit, probably at a birthday party. And, naturally, nobody ever had any flashbulbs at the right moment. The guilt is overwhelming when you have a child who dies. Even now I say to myself, at least, at least you could have had the flashbulbs.

  I have a few recordings of Alex’s voice, too, starting when she was almost three, in the fall of 1974, and periodically after. I would sit Chris and Alex down and ask them a few simple questions, and they would respond the best they could, between giggles. What do you like to do best, Alex? “Play house.” What do you like to wear? “Long dresses.” Mostly they were more interested in hearing themselves played back than in anything they might say. In fact, best of all for them was when the formal interview was finished and I would permit them to make optional noises into the microphone. Also, one whole interview I later erased by mistake. And I always forgot the damn flashbulbs. And then, all of a sudden, she’s just gone; there’s no more.

  The last thing I have of Alex on tape is a recording she made with me one soft, shining day the summer before she died. She loved the silly messages I would make up for my telephone answering machine; I would put on an accent or work up a little bit—instead of just saying please leave your name and number. Alex pleaded with me to include her in the act the next time I made up a message, and so one day, when she was depressed because she had just found out that she had to go back into the hospital, I created a new routine with a good part for her, and we practiced it.

  When someone called up and the phone machine went on, the caller heard the shower running. In fact, it really was the shower running, although I’m not sure it sounded like that. Anyway, then Alex came on the microphone, crying out, “Oh, it’s the telephone, Dad.”

  And then I said, “Hey, I’m sorry, all the Defords are in the shower here, but if you’ll just leave your name and your number and any message when you hear the beep, after I get out and get dried off and put some baby powder on, I’ll call you right back, okay?”

  And then the caller heard the shower running again, until just before the beep when Alex yelled, “Pass the soap, Mom!”

  She adored doing that with me, and when she had to return to the hospital, we would call back to the house so she could hear herself on the phone machine. “Pass the soap, Mom!”

  Alex had a great sense of humor, she loved to act, and I still enjoy going back and listening to that message (I saved it on tape), because, silly as it is, it has charm and life, and those are the memories I want of her.

  And I remember too what fun Alex and I had doing it. In fact, when we finished making the tape we were having so much fun that she asked me what I was going to do next, and when I said I didn’t have anything special planned, she said we ought to do something else together, and I said sure, fine, what, and she thought awhile, and finally she just said, “Laugh.”

  And I agreed that was a fine idea. Alex was always a great laugher. After she died, when the children in her class wrote remembrances of her, an unusual number wrote about times she had laughed. Their recollections were about evenly divided between her courage and her laughter, as a matter of fact. She laughed so well it left an impression. For example, Jake Weinstock wrote: “One time in school last year, Stephen Baker made Alex laugh so hard that she fell in my arms and then she laughed even harder. Then we all laughed.”

  And so then Alex and I laughed. Unfortunately, at that point, late in her life, it was difficult for her to laugh without coughing and starting to choke. So she made sure she laughed gently, and I laughed extra hard, for both of us. Then she came over, sat in my lap, and this is what she said: “Oh, Daddy, wouldn’t this have been great?”

  That is what she said, exactly. She didn’t say, “Hasn’t this been great?” Or, “Isn’t this great?” She said, “Oh, Daddy, wouldn’t this have been great?” Alex meant her whole life, if only she hadn’t been sick.

  I just said, “Yes,” and after we hugged each other, she left the room, because, I knew, she wanted to let me cry alone. Alex knew by then that, if I cried in front of her, I would worry about upsetting her, and she didn’t want to burden me that way. She was the only one dying.

  Chapter 2

  So we do have a few words of Alex’s left, preserved on tape. And I remember very well, too, the last words Alex spoke. She said, “I love you, Chris,” when her brother came into her room to say good-bye to her. After that, after Chris left, Alex was too exhausted even to whisper and only talked to Carol and me with her eyes.

  Actually, too, she didn’t quite say, “I love you, Chris”; as always, she said, “I love you, Chrish.” This is what she called her brother. Say it out loud, and you will see why. If you say “Christopher”—which is what most people called Chris are officially named—there is a solid break between the “Chris-” and the “-topher.” But our Chris is a Christian, and going from the “Chris” to the “-tian” requires the bridge of an sh sound, so that spelled phonetically, it is more properly Chrishtian, and therefore, in the diminutive, it really should be Chrish.

  Alex started calling her brother that when she was about four years old. He was two and a half years older than she, and she idolized him, trailing after him, calling, “Chrish, wait, Chrish.…” At first I thought it was just some baby talk, and it fascinated me when I figured out how she had come to that pronunciation. It is an insignificant thing, to be sure, but I point it out to show that Alex really did have the most incredible ear, as well as a gift for mimicry to go with it. My mother is from Virginia, and once, after visiting my parents for a few days, Alex came back with an absolutely perfect southern accent. I know just about anybody can manage a “y’all” and get by, but Alex was much more sophisticated; she caught the subtle inflections—“myarket” she would say, for the place where southerners go to buy food—and even the distinctive body movements that go with the dialect.

  There was always an irony to Alex. She was, on the one hand, utterly vulnerable, helpless against this disease that was destroying her day by day, and yet she was, often, quite cool—even professional, I would say�
�in the way she conducted herself as a patient, as a victim. If she must be a victim, then she would be good at that. This is what made it so much harder for Carol and me, even as it made us prouder. Of all the people surrounding Alex, none played a role in the drama of her dying nearly so well as she played hers. And hers, of course, was the most difficult. Imagine knowing how, as a child, to go about dying. She never made any mistakes in that line. And it was, assuredly, not a matter of innocence either.

  Her doctor, Tom Dolan, used to say that Alex was “seven, going on twenty-eight,” and often with grownups a very discernible part of her made her their peer. I don’t mean she was some woman-child, like a growing girl on the cusp of maturity who is never quite sure where she stands. Not that; but, uncannily, Alex always understood that something in her was already a woman, and she became what she had to be in the proper place. I think some of this came simply from being around adults more than other children, because she was so often in the hospital. But I think some of it was her secret, too. Alex sensed that she was going to die long before she truly understood it, and that made her special. Perhaps just that is what put her closer to God. I don’t know.

  Sometimes, when I went out with Alex, just the two of us, I really felt as if I was going along with a little person, a contemporary. In comparable circumstances with Chris, even though we might have more in common—two guys going to a ball game or something—no matter what, I always knew I was with my son. Alex mixed things up. She even took to calling me “my little Daddy” that last couple years. There was nothing rational in that—I’m not even physically little—but sometimes I thought it was really quite apt, that I was more her little thing than she mine.

  People ask me, how can you do this, write about her, go through the anguish all over again? And that is a fair question. I am so sick of crying. It goes on and on. And it’s strange in a way, because I thought I managed very well at the end. Why, it was supposed to be so difficult, but nobody ever told me quite how easy dying is, when it isn’t you dying. No, the trouble is more afterward; it’s the missing that’s so hard. And this makes me miss Alex all the more, sifting through the drawings, seeing her face in the photographs, seeing her move on the screen, reading the things she wrote or people wrote about her, listening to her on tape. Pass the soap, Mom!