by Frank Deford
Alex visited the aquarium at Old Mystic, Connecticut (featuring Alex the Whale; but he’s a boy Alex), and she went to Williamsburg, where, best of all she enjoyed learning about how eighteenth-century ladies used their fans to send amorous messages to their beaus. She saw the Old Man of the Mountain up in New Hampshire and she saw Miss America crowned at Convention Hall in Atlantic City one of the years I was a judge. She went to Florida and saw alligator farms, a snake farm, the Monkey Jungle, the Waltzing Waters, and Cypress Gardens. Plus Disney World and some neat motels. She saw the sights in Washington, D.C., and once she even got out of the country. That was in March of 1979 when some friends of ours, Ann and Harvey Clapp, invited us to stay with them in St. Croix.
So Alex did see and do a lot for a little girl who barely lived eight years.
Inevitably, though, there were many things we never did manage to do. Like a circus. Like Hawaii. That was the ultimate. Alex always dreamed of Hawaii. It was far enough away and different enough to be exotic, but it was American, televised all the time. Hawaii is a most practical fantasy. Besides, above all else in the world, Alex loved dancing, and so hula was right up her alley. When she was five years old and I traveled there, I brought her back leis and a hula skirt, and she loved to dress up in them. Alex dreamed of Hawaii. In her happiest times alone, playing with her dolls, the dolls were taking trips to Hawaii. Or they had just arrived back, all suntanned. Certainly she never permitted any dolls to die in Hawaii. Alex would say that when she was grown up and didn’t have to do therapy anymore, “When they have a cure for my disease, when I’m free, I think maybe I’ll live in Hawaii.” She had that uppermost in her mind.
Of course, Hawaii was a long way and a lot of money from Connecticut, and so I never led her down the garden path when it came to Hawaii. In fact, what I started to promise Alex was that when they did find a cure for cystic fibrosis, I would take the whole family on the next plane to Honolulu, and we would stand on the beach at Waikiki and toast in champagne.
“You mean I could have champagne even though I’m not a lady?” she said.
“Alex, the day they find the cure, you can drink champagne or anything you want anywhere you want.”
And Alex would even tell people that, that she had an extra lot to look forward to, because when they found the cure for her disease, she wasn’t just going to stop doing therapy and stop taking medicines and all that, she was going to Hawaii too.
Then when the Clapps invited us to St. Croix we had a terrific time, and Carol and I could point out to Alex that St. Croix was a tropical island just like Hawaii. So, when we came back home I started thinking, Alex loved that so much and she wants to go to Hawaii so much, next year we will all go to Hawaii, and never mind how much it costs.
Well, thank God, I never came right out and told Alex that. In May, only a few weeks after we got back from St. Croix, she had to go back into the hospital, and that time it was more serious than ever before. She deteriorated quickly after that, and there never was another spring or another chance to go to Hawaii.
Well, at least not while Alex was alive. But just before the next Christmas, 1980, Carol and Chris and I did go to Hawaii. And we went largely because of Alex, which made it especially hard for us. I cried, not only because Alex wasn’t in Hawaii, which was the one place on the face of the earth where she always wanted to go, but because the rest of us were there—and we were there for the very reason that she had died.
I kept telling myself not to feel guilty. There was nothing more I could do for Alex. I had given her all the love I could, everything I was capable of. But still, that was only a bunch of rational stuff. She had wanted so much to do that one thing, to go to Hawaii, and I put it off and put it off, and soon enough there was no way we could get there together.
And what worries me is that Heaven might end up to be the same elusive sort of thing.
Chapter 10
School buses are always the most painful of reminders. At once they remind me of Alex then and make me consider where she would be now.
When an adult dies, even when one dies fairly young, I think we accept that person forever as an ageless adult. If John dies when he is twenty-five, I don’t think people look at his best buddies years later and conjure up John, too, as balding and overweight and hopelessly middle-aged. With children it’s different. Alex was eight when she died, and while I cannot, in my wildest dreams, conceive of her as a grown woman, the opposite does apply.
I see her friends getting older, I see her with them, and at the same time I am crying out that they must stop. Please, please! Each time I see Wendy or Aimee or any of them appearing older it hurts me more, for they are the most direct links I have with Alex, they are the contemporary connection. Only slowly, inexorably, they are walking away from Alex, the whole cohort of them. Alex is forever eight, and now they are eleven, then twelve, soon thirteen, and then sweet sixteen and twenty-one, and each day they grow older, Alex turns more into memories.
I can hardly remember myself at eight; how are we expected to remember anybody else at eight years old? “My God,” Carol said the other day, apologizing in some way, “I’m having trouble remembering how she talked. I don’t really remember how she sounded anymore.”
So, the school buses are the worst. They rattle down the street, beyond the lawn in front of my office window. They never stop near our house. The neighborhood kids all gather down at the corner of Devon Road, out of my sight. The last couple years, when Alex was weaker, the bus drivers, without being asked, started letting her off right in front of our house. She would struggle down the steps—that last step off any school bus is a monster for any kid—catch her breath, and then amble up the driveway to the house, reviewing what she was going to tell Carol or me about her adventures at school that day. Sometimes, in good weather, I would wait outside behind an azalea bush, and jump out at her. If the kids on the bus could see this buffoonery—from a certified father!—it would absolutely mortify Alex. “Oh, Daddy, please don’t embarrass me like that,” she would say.
Alex’s very first bus ever came at 8:15 A.M., Tuesday, the seventh of September, 1976. A whole throng of neighborhood children were there, Chris, the veteran, included, and rookies Aimee and Wendy too, and Carol was there to send Alex off, but still she clambered up the steps with a great deal of trepidation. However, the instant the cord was cut, she pranced to her seat and was fine. This was a common brand of behavior for Alex, even on occasions when she was somewhat experienced in the adventure. “Alex, why do you act like this?”
“Oh, Daddy, that’s what being shy is.”
Miss Linder was Alex’s kindergarten teacher at Greens Farms Elementary. In her first report she found Alex “cooperative, conscientious and well-mannered.” There was some good news and some bad news. “Occasionally, she holds her flashcards in an upside down or backwards position.… Alex also has been working with Mrs. Ikard in an adaptive physical education program. Mrs. Ikard reports that Alex tries very hard and is showing progress.”
This latter was a nice teacherese way of saying that Alex was hopelessly uncoordinated. It took her forever to learn to put on her underpants or to hold a pencil. When she first got on a tricycle, she promptly fell off and wouldn’t dare remount for months. Alex was, quite simply, a klutz. That Chris happens to be well coordinated made it ironic, and it would have been otherwise inconsequential, except for one thing.
Cystic fibrosis is one of the rare diseases from which females suffer worse than males. Beginning about the age of seven or eight, girls die at a faster rate. Nobody can explain this disparity, but most doctors suspect that whatever physiological factors may be at play, cultural conditioning is even more important. Little boys—even little boys with CF—tend to go out and play ball games, rough-house, run around and build up their lungs in those ways. Little girls—probably especially little girls with CF—dress up, play with dolls, and lead a more sedentary existence. Their lungs aren’t tested.
It doesn’t m
atter all that much. Not in the long run. It wouldn’t have saved Alex if she had swum the English Channel. Still, we kept wishing that she would want to be more athletic. Who knows? It might have been just enough to have kept her alive until the time when they would knock out pseudomonas, and then …
Anyway, Carol did get Alex going to a dance class. It was run by a lovely young woman named Marlayne Schaeffer, who later was to help tutor Alex in her regular schoolwork. The dance class—styled authoritatively as ballet by Alex—was her delight, and, surely, the first time in her life that she really enjoyed something physical. She was relatively proficient at it, too; she had great confidence in her body when she was dancing, and that had an impact on all the rest of her. “I never saw a child come out of herself so quickly as Alex did,” Marlayne told Carol. “At first she was a little inhibited, but then she would get this lovely look on her face just watching the others dance.”
Slowly, Alex became more venturesome. For once in her life she found out that she could make her body obey, make it work, and that enthralled her. It proved that she wasn’t as uncoordinated as she and the rest of us all thought. I came to believe, in fact, that if she had put an equivalent effort into bike riding or swimming or throwing a ball, she could have become proficient at those too. But dance was the only physical activity she ever threw herself into, and I’m sure now it was that same selective instinct of hers. Alex understood that time was short for her, and that she had to choose.
While she was still healthy enough, dance gave Alex her favorite creative outlet. She enjoyed it most, too, when Marlayne introduced props into the activity—scarves to whirl about, bright objects to brandish. Then Alex could even prevail as a performer over the girls who could dance physically better than she.
When Alex did her creating by herself, away from classrooms and dance studios and other people, she called it imaginating. That was her word; her best word, I think. Alex was a big fan of Beverly Sills, and she even came to feel some identification with her, because Carol told Alex about how Beverly Sills had a daughter who was deaf, who had never been able to hear her own mother’s beautiful voice. And one evening, when Carol visited Alex in the hospital, there she was alone in her room, watching Beverly Sills in La Traviata on television.
“But Alex,” Carol said, “don’t you have trouble understanding what’s going on, since you don’t know what any of the words mean?”
“Oh, no, Mother. It’s better this way, because then I can make it all up. I’m just having a good time imaginating.”
Like some witch doctor who wears a mask to help conjure up friendly spirits, Alex liked to assist the pure imaginating by wearing special costumes. Almost all little girls like to dress up, I know, but Alex made a fetish of it. Her everyday costume included large earrings, many bracelets, a (perennial) scarf in her hair, plus a long gown of some sort, simulated or real.
Sometimes Alex would just make up stuff out of the blue, as with the flowers cum tutus. Other times, like most artists, she would borrow from the world around her, as when she gave therapy to her dolls. One time, after she had witnessed a christening at church, I came into her room to find her, fully bedecked as usual in earrings and scarves, but portraying a minister. She had constructed an altar and had a doll there. “What are you doing, Alex?”
“Can’t you see, Daddy? I’m bap-a-tizing.”
Another favorite activity was “doing commercials,” with the bathroom mirror serving as TV screen. She could ad lib, too. Here’s what Jake Weinstock wrote in class shortly after Alex died:
Things I Remeber With Alex
At a cookout last year I was playing ping-pong with Nicky and Alex was watching and I made a bad serve and the ball hit Alex and she fell on the floor like she was knocked out.
Not bad. Whenever Alex was asked to write down the things that she would like to be when she grew up, she would always put “Dancer” first and “Actress” second. I think she fancied herself as a dancer first because then she could dream that if ever she did grow up, she would be able to whirl about endlessly and gracefully, never having to stop and pause for breath, to excuse herself and sit down to catch up.
When she was in Marlayne’s dance class and she had to stop for a while, Alex would not, even then, moan or whine. She would not upset the ballet that way. It was not the dance’s fault that she could not go on; it was her disease’s fault, and she understood that. So she would just sit down until she could catch her breath, all the while smiling and laughing at all the lucky little girls still out there dancing. And she would imaginate too.
A few months after Alex died, Marlayne and the other dancers in her local troupe, which was known as Kinetikos, put on a show at the YMCA, where dance classes were held in Westport. Afterward, all of them—Marlayne and Cindy Bernier, Lindy Gibb and Joan Chess—dedicated something to Alex. It was their own perfect idea: a huge old trunk, as much like a pirate’s treasure chest as could be found. And inside it were all sorts of old clothes and costumes that kids could put on whenever they felt like it. A portrait of Alex hung over the chest, watching. And it was called “The Imaginating Trunk.”
Alex’s memorial at Greens Farms School is a little section of the common room, which has been named “Alex’s Corner.” Bright rainbow letters, posted high, label it as such. There is a desk there, with Alex’s smiling picture on it, some books and games and puzzles, and a few bean-bag chairs of green and yellow, so that any child has a place to go and relax and find a moment’s peace.
As Alex got sicker and weaker, she couldn’t run around at recess. And that upset her. Recess. Remember when you were a child? It’s universal and timeless: What’s your favorite subject?
Recess.
So that separated her more than ever. She would hang back, watching all the other kids scampering around, scrambling over the jungle gyms. The teachers would come over and talk to Alex, try and divert her, but they never had much success. Recess was the one time, it seemed, when even Alex would feel sorry for herself.
And so that is why the school decided to construct Alex’s Corner, because whenever there is another sick child like Alex, or if only for a day or two some little girl or boy can’t go out for recess, at least they’ll have a place where they can go and find some peace and maybe even imaginate if they want to.
Chapter 11
It was barely a month after Alex first climbed onto her school bus that she had to leave school and go back into the hospital, for the first time since the crisis in her infancy. There was no denying that the decline had set in. I certainly didn’t know that there were barely three years left in her life, but I understood enough of the situation to write: “How cruel is this? One day you send your baby off to kindergarten, to start her school, and the next day you take her to the hospital to begin to die.”
The timetable was to be a simple one, too. At first, Alex would go in every six months for ten-day treatments. There was never any urgency then: When would it be convenient for Alex to go in sometime soon? But before long those periods between visits began to shorten, and eventually the time in the hospital began to lengthen, too. In the end, all we prayed was that she might be able to come home and die. That’s the way it went. That is what a progressive disease is. It’s an odd use of the word, isn’t it?
If there was a saving grace in those early, ten-day hospital sojourns, it was that they were as smooth as a child could expect. Essentially, all the doctors did was to give Alex antibiotics intravenously instead of orally, as she normally took them at home. This constant, concentrated dosage fought the pseudomonas in her lungs more effectively, and, we hoped, made her stronger. Weighing her was the climax of every day. “Alex gained a half pound!” Carol would cry out to me, as if we had just won the lottery.
But once the IV was in place, lodged in one of the veins on the back of her hand—left first, then right—Alex’s existence in the hospital was quite routine. Yale-New Haven is a teaching hospital, so invariably interns came by to study her, and
there would be periodic X rays and visits by Tom Dolan and his associates in the CF clinic, but these things were all pretty cursory. Most of the time Alex could watch television, read, work at some activity in her room, or get involved in the little hospital school or with the crafts program.
On that first visit, in October of 1976, Carol slept over for the first couple of nights on a cot next to Alex’s bed. This was not an uncommon procedure for kids new to the hospital, but, obviously, it wasn’t something Carol could do every night. We tried to be tough about sleeping over with her, and, in fact, we could pretty much measure Alex’s mood by whether or not she dwelled on the subject. The sadder and more unpleasant things were, the more she would beg Carol to stay the night. I had lied at first and told her they did not allow daddies to sleep over, and Alex bought that for a while, but eventually she started pleading with me, too.