by Frank Deford
“Carol was near tears now, but there was more anger than sadness. ‘This beautiful little thing,’ she said—and she snapped that off. ‘This beautiful, gorgeous child in her Valentine dress, spitting up blood.’
“‘I know.’
“‘My God. My baby, spitting up blood.’
“I don’t remember what I did. I only know that it wasn’t much. I didn’t know what to do. I only knew I must try and be strong and cool, for to go along with Carol would only make it seem all the worse. I did not know how to help her, I did not know what to do for her. And if I could not help her then, at that moment, then how will I ever be able to comfort anyone, ever, in my life? But that is the way this thing is. So all I can do is keep on thinking about Alex, about what a brave, majestic little thing she is. Just her; never mind me or Carol or Chris or anybody else. Still, beyond that, there must be some way for us to honor life through the prism of her meaning.”
Chapter 16
The last really big birthday party Alex had was her seventh, on October 30, 1978, in the autumn of her second-grade year. She always had great birthday parties, because she was born the day before Halloween, and everybody had costumes on hand and was ready for a good time. Chris pointed out to me, on this occasion, that Halloween and Valentine’s Day would make better holidays from school than some of the “boring” ones we officially have, and I agreed with him.
For her party Alex looked terrific, really smashing, in a brown dress with white trim, her hair caught up in a bun. Very sophisticated. She was quite the little coquette now, flirting shamelessly with me all the time. She even invited her two favorite boys to her party. One was Jonah, Tina Crawford’s son, who was too close a family connection to be a certified love interest; the other was Stephen Baker, who was always identified as “my boyfriend,” even though I never did quite get Stephen’s intentions clear.
But never mind Stephen. Alex looked like a knockout to me, on this, her seventh birthday. Her face was fashionably thin, still quite beautiful. In the photographs of that day you have to look deep into her eyes and know what you are searching for to see what is there, to guess what is coming. I remember so well taking those pictures. Chaucer was hanging around, so we posed Alex with him. He’s a Sealyham terrier, and he had been a very frisky fellow who could sit up on his rear end just as easy as you please, and for minutes at a time (as long as he thought food was in the offing). But he was eleven years old then, too old to cut that kind of mustard anymore. Besides, Chaucer had had a bad habit of going out in the street, so he got run over every now and again, which also cut down on his hijinks. Carol had hit him the year before in the driveway, on his birthday.
But he was still so cute, a picture-book dog, and it was a matching picture-book autumn day, so we posed Alex with Chaucer, amid the glorious leaves. And then, just as I prepared to push the button again, very casually Alex said, “Just a second, Daddy. I have to cough first.”
And she took a long time doing that, embarrassed at the fuss she caused. Understand, Alex wouldn’t just cough. It would turn into a horrible gag, going on and on, as the mucus blocked her breathing. This happened more and more often, every day. She hated it so. After she died, one of her friends, Maura Frigon, wrote us: “Alex did not use her sickness to have people like her. Whenever she coughed someone would go get her a tissue. And whenever she coughed the class would say are you all right and she would say I’m all right.”
Alex coughed an extra special large amount at her party that day because she laughed a lot. Carol had fixed up the most incredible bunch of fun and games, one with strings running all around, like a giant spider-web. To get the prize, the children had to take their own string and go under it and around it and everywhere. But by then, whenever Alex enjoyed herself the most and laughed, she coughed. That was the damnedest irony of them all, that her greatest joys could trigger the worst inside of her.
This is what another classmate wrote to us about Alex:
When Alex and I were riding in my mother’s car going to the Beardsley Park Zoo on a Nursery School class trip and she was coughing so much my mother kept calling back to her to see if she was okay and Alex was trying to make my mother feel better.
Sincerely,
Emily S. Girard
P.S. The capital “S” stands for Susan.
One day, when I was away, Wendy and Alex were drawing pictures in my office, and when Alex left the room, Wendy took another piece of paper, and with the crayons, she wrote this, and left it for me.
The life about Alex Deford
by Wendy
Alex Deford has a duzes but she is the kindest
and nice little girl.
And she also drew a picture of Alex sitting in a chair.
Actually, Alex seldom wanted to be Alex at that time. She went through a phase when she wanted to be “Alexandra.” Occasionally she would even take the effort to sign herself the complete Alexandra. She could write script by then. Here are some of the things that Alexandra wrote, in the second grade, at Brownies, or in the hospital. Generally you can tell the ones she wrote at the hospital because they appeared, corrected, in the ward newspaper.
[The italics indicate form questions.]
Once upon a time there lived a flower. She was very sad. [Picture of sad flower with blonde hair.] But then she saw a handsome man. [Happy flower with mustachioed handsome flower.]
What would you wish to be?
I wish I was a kitten in a buttercup. Alex Deford
When do you feel good?
I feel good about myself when I help someone and there happy about it. Alex Deford
I went to Williamsburg. I saw the colonel pepl. I saw the Guvinr’s palis. I saw the black-Smith. I saw a lady macing wigs. I saw the capitl where they made the laws, ladys wor long dress with howps. I like them.
My position in the family. I’m the littlest one in my family. I don’t like being the littlest because I have to go to bed earlier than my brother who is ten years old.
Sometimes I like to play with my dolls and pretend that my dolls are smaller than me. [I never understood that, and forgot to ask Alex to explain it to me. I think if I had, she would have made up an answer, the way kids always do about their inexplicable drawings.]
My Christmas List
I what som new dress.
I what som books.
I what some games
I what some ballet posters
I what some jewelry.
I what some mariyonhets
I what some long undrwear
I what som scarves
Love Alexandra
I woke up and I was twelve feet tall. I got out of bed and broke through the ceiling. Then I couldn’t find any clothes that fit me. So I took my sheet off my bed and wrapped it around me. It was a nice view out of the roof of my house.
What are you thankful for?
I am thankful for me and every things Around me. [The accompanying picture was the better part of this, showing a little girl, obviously Alex, with a cartoon balloon coming out of her mouth. It said: “I love me.”]
ALL ABOUT ME
The Other Me. What Do you do when you’re not in school?
I like to dance and sing and put on shows for my Mom and Dad.
I think a good friend should be [and here were the choices]:
cute funny rich nice
[Alex had underlined nice.]
Why?
Who whants a mean friend.
Thinking Ahead.
What will I be when I’m 23?
I’ll be a scientist and I’ll be a enveter and go to the moon.
What will I be when I’m 43?
I’ll see other children growing up and seeing new things.
What will I do when I’m 62?
I’ll chat on the phone a long, long time like my Nana does.
If I’m alive at 95 …
They’ll have a new inventians. I’ll sit in my old rocking chair.
WHEN I’M GROWN UP I hope I w
ill be:
1.—a dancer
2.—a singer
3.—actress
4.—pritty
5.—rich
6.—smart
7.—good grades
You get THREE WISHES! Think carefully. This could change your life.
1. I wish I could have a cure for my disease.
[Dutifully, Alexandra also put down two other wishes.]
Chapter 17
One day, as it turned out, almost exactly a year before she died, Carol took Alex into New York. It was a very special occasion, because Alex was one of my two cystic fibrosis patients appearing in a television commercial. She didn’t have to do much—there were no lines for her—but she loved being a real genuine certified actress—in New York, near Broadway, no less!—and she played very well to the crowds.
The commercial was shot downtown, in Washington Square, and then Carol took Alex to lunch at a little restaurant in Greenwich Village. Even if Alex didn’t care much about eating, she loved to go to restaurants—the fancier the better. Afterward they went uptown to Central Park and the zoo. It was a brisk day, but bright in the sun, and comfortable if you could keep moving along with someone you loved.
“It was a very special day—the commercial and all that,” Carol told me later. “And I guess, looking back, that it was the last day like that Alex and I ever had. A whole day treat together, a trip somewhere, just the two of us. So I remember it especially vividly. No, it wasn’t the last ‘good’ day she had, but it’s one I can visualize so clearly because it was so special. Alex was at her cutest, her cheeks all red, her hair in the braids I loved. We walked a lot, downtown, all over the zoo. Walked! I remember that so clearly. She was still able to walk some.”
In only a few months, though, by May, the final decline had really set in. That was when Cyd Slotoroff first met Alex. Cyd never saw anything but the worst. There was not much to the last eight months of Alex’s existence except pain and doubt. How Alex kept going, without losing faith and love, is the greatest wonder of her life. Sometimes I think that she was kept alive as long as she was to prove all that she was.
A few months after Alex died Cyd wrote a song called “Child of the Stars.” When she introduces it at concerts, she says, “I’m privileged to work with kids in a hospital. I’ve learned a lot from many of these children, but one little girl I met taught me more about life than anyone, and this is for her.” And then Cyd sings:
Child of the stars,
I know you’re free now.
Child of the stars,
You came and you’re gone now,
Gone to a new home—
You didn’t stay long.
Peace in your eyes,
You saw with your heart.
Gentle and wise,
Drew lightness from dark,
Opening, though knowing soon
You’d be called away.
And I, I carry you on
In my heart and in my song.
You are shining true,
You are shining through me.…
That May of 1979, when Cyd first met Alex, she was only beginning to die. Alex had to stay in the hospital over Memorial Day, and I was away on an assignment, so Carol went up to Yale-New Haven for the hospital’s holiday picnic. It was a real picnic, too. Except for the few children who were attached to machines, they managed to get all the kids outside on the lawn. There were balloons, party food, and clown makeup, and the local television station had a crew come over and get everybody on tape for the evening news. Alex was in sort of a wheelchair, Cyd was playing her favorite songs and the kids were singing along, but Alex barely raised her head, even when Cyd sang something like “Ship in the Harbor,” which she adored. Alex was still coming to grips with the fact that, despite it all, she had declined to another, lower level.
Always before, no matter how poorly off she was when she came into the hospital, Alex could be revived by the ten days there, by the rest and antibiotics. But this time she had to stay in for at least an extra week, and so many new things had gone wrong that it was impossible for her to be restored. Along with all the usual ailments involving her lungs and pancreas, Alex also began to suffer from a weakened heart, liver problems, arthritis, regular high fever, and pneumonia. There was so much wrong that some things just got lost in the shuffle. Various medicines would cause Alex uncomfortable (and unattractive) chapping around her lips, the sort of ailment that would normally make parents alarmed and solicitous. God forgive me, I can actually remember being short with Alex once when she brought the subject up. It was like her old complaints about apple sauce, almost as if she didn’t have the right to bitch about a relatively minor ailment the way everyone healthy did.
Or, to put it in perspective, and in her own terms, one day the next fall, when Alex was sicker still, she’d somehow managed to escape the hospital for a few days and come back to her school. Her class was going somewhere, marching down the hall—the way all third-graders everywhere march down the hall—but Alex fell quickly behind. Mrs. Beasley dropped back to offer her some help, but Alex only shook her head and apologized that she had caused all this attention. “I’m sorry,” she said, “it’s just my arthritis.”
I don’t know how she carried on. I doubt that she ever topped forty pounds. I don’t see how a person so thin could have the room to have so much wrong inside.
“Poor, dear Alex is so much worse. The decline has been swift. I would know that simply from the way the nurses talk to me now. Alex realizes herself, too, if only because she is in pain so much of the time. When she comes home, whenever, she’ll have to sleep with an oxygen device, prongs stuck into her nose, and already I wonder whether prolonging her life is worth it from here on. I would guess she has another year or so, maybe even two, but she is so weak now that her life has become precarious. Could she survive any new crisis today? I doubt it.
“I am down to hoping for a miracle now, and I know Carol understands that too. She has been so depressed lately, and now the summer is coming. The summers always seem to be the worst for her, when she doesn’t have school and schoolwork to escape to. Then it just seems that she never gets away from it, that cystic fibrosis simply overwhelms her. Last summer was practically the ruin of us. We’ll have to try even harder to make the best of this one.
“Alex and I discussed the tooth fairy tonight, and inflation vis-à-vis that particular occupation. Of course, she’s very tooth conscious now, without hers. Gee, she’s so cute. And still, through it all, she continues to trust in the beauty of life. What is this child made of that she can be robbed of everything but pain, and yet sit there and laugh with me about the tooth fairy?
“I suppose that is why, if it is just a matter of keeping her alive, I would be hard pressed to want her to struggle on. Or am I only being selfish when I think that? Do I just want this awful thing resolved so that I can drive a car without crying again, so that I can find some peace, so that I can get on about my life? I don’t know. God, I don’t. I only know one thing for sure, that we have had this extraordinary little creature with us for seven years of joy, and I fear it must only be all diminishing returns from here on in. I think it would be best for God to take her now, while she can still dwell on the tooth fairy.”
Chapter 18
By the summertime, 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, to get more oxygen. By August it was obvious that she would soon have to go back to the hospital, and, in fact, we postponed it for a week or so 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 came to be reached regularly, especially when we did therapy. Obviously, no one enjoys being turned this way and that, upside down and sideways, for an hour or more every day, while somebody pounds on her, but Alex was as good at accepting that as anyone you could imagine. When she did complain, it was more in the natur
e 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 almost every time she was screaming at Carol or me. “You’re hurting me, Mother!” Please, Daddy, stop now, please, please. This hurts!”
When we finally told Alex that she would have to go back in the hospital right after school started, she fell to still lower depths. Carol took her out and bought her some new clothes, but it didn’t help much. That was probably the worst time for Alex, because I believe now—looking back—that was when she finally came fully to grips with reality. She understood it all, at last. The only thing left was to play it out. I surely don’t know myself, but I suspect that the hard part is to learn to embrace death, as Alex was doing in those months; it’s easier, when the time comes, for death merely to embrace you.
But Alex 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 on the pretense 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 all the questions with the most incredible excitement and enthusiasm. Even in my most optimistic projections of her longevity, I doubted that she could possibly last out the school year, but here we were talking about a school year, about a grade, about a spring that would surely never come for her.
And yet Alex 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.”
