Alex Read online

  Of course, it hurts when anyone you love dies. But when it is a child who dies—when it is your child—as the grief fades naturally, there still remains that vacuum, and it is replaced by anger. More fury is growing within me that Alex never had her fair chance. I didn’t have time to be mad when she was dying; there was no room for that then. But now …

  Then, too, the trouble with people who give so much, as Alex did, is that when they leave you there is so much more that they take away with themselves. And what makes it hardest of all with Alex is that she was so extraordinary, so special, that she has become a sort of ideal for me. Believe me, this is not just some sad and biased father talking. The teacher who was my adviser in high school, A. J. Downs, wrote me after she died: “Before we got too smart for our own good, we called people like Alex saints.” Imagine yourself trying to live up to an eight-year-old child. It’s very disorienting.

  Cyd Slotoroff is a young woman, a pediatric music specialist, who entertained the children in the ward at Yale-New Haven Hospital, where Alex spent so much time. Cyd played the guitar and sang along, doing many of her own songs. She symbolizes many of the adults with whom Alex became friends. Cyd says:

  “I would feel selfish when I’d come to the ward and spend so much time alone with Alex. It wasn’t only that she was my favorite child; it was just that there was no place else I’d rather be than with her. Alex was inspiring. I always felt honored just to be in her presence. Why couldn’t we all be this way? She was so full inside, felt things so deeply, and she really came to affect my life. She was the most extraordinary child I ever met.” Cyd stopped and paused.

  “No, that’s not quite right. You know that—Alex wasn’t ever just a child. However old she was, she was just a human being.

  “And more than that. You know, I never talked to Alex about God or anything religious, but she was the most spiritual person I ever met. I was driving along in my car—this was right after she died—and it was a beautiful clear day. The sky was so blue, and all of a sudden it seemed as if Alex’s presence had expanded and filled everything. She had been released. I’d never felt anything like that before, any time in my life.

  “God, what a blessing that child was! What a gift!”

  And sometimes it is something like that for me, too. I say, I’m sorry I did that, Alex. Or, I’m sorry I can’t be as good as you, Alex. Or sometimes I think, what would Alex want me to do here? What would she expect me to do? It frightens me most that I will meet some great test in my life—maybe one for my life, as she did—and I will not be able to do as well as my little baby girl did.

  Chapter 3

  For a few months there, right after Alex was born, I thought I had just about everything a man could want, at least in a textbook kind of way. I thought surely somebody from either the Census Bureau or the Department of American Dreams was going to get wind of me and come by and take publicity pictures. I had a job I loved, a career, a future, a house in the suburbs, and a VW bug and Ford Country Squire station wagon. I had a fluffy white dog named Chaucer who could sit up and beg, and a color television set that got good reception—eight VHF channels. I had a beautiful wife and a handsome, bright little son and heir, and, then, a daughter too. At the least, I thought someone should bring out a souvenir deck of cards featuring us, with a picture of the station wagon on one card, the dog sitting up and begging on another, me on a face card (probably the king of hearts), and so on.

  Alex was the icing on the cake. Imagine getting your boy and your girl, just like that, in that order, exactly like in the comic strips. For a variety of reasons, everybody in the family especially wanted a girl, too. There hadn’t been a female born in the Deford family in sixty-seven years, not since 1904. I was one of three brothers; I’d never even had a little girl around the house. And after I got my pal, Chris, Carol so much wanted a daughter to fuss over and dress up and talk to. She was ecstatic when Alex was born.

  That was October 30, 1971, shortly after dawn broke. They came out and told me that I had a fine, healthy daughter. I jotted it down in the margin of the page in the magazine that I was reading over and over: blue eyes; nineteen and a half inches long; five pounds, ten and three-fourths ounces. Alex had the same color eyes as her brother—although they would change to brown as she grew older—and she was only a half inch shorter than he had been, but, curiously, she weighed almost two pounds less than Chris had. Siblings usually weigh in about the same, so the disparity probably should have alerted someone. But it didn’t. She just seemed a fine, healthy girl.

  Only she wasn’t. Alex was, right from the start, sick all the time. She ate voraciously, but food went right through her and she couldn’t put on any weight. Besides, she always seemed to have colds and ear infections. But I didn’t take it very seriously. The hospital had certified her healthy, so, certainly, nothing could be terribly wrong. The pediatrician finally said it was “failure to thrive,” but even that didn’t alarm me. I’d never been sick in my life, never been hospitalized except to have my tonsils out, and probably, deep inside, I harbored some intolerance against sick people. The way I saw it, Alex was probably just a slow learner at health, the way some kids are later at walking or talking.

  Carol, however, grew increasingly worried; as the weeks went along, she could not ignore the fact that the baby just never seemed to come around, never quite got right, even though there wasn’t one thing you could put your finger on. At that time, too, we both set a lot more store in hospitals and doctors. Then, on Washington’s birthday, 1972, when Alex was almost four months old, Carol’s father had a stroke and died. The day he was buried it snowed and was bitter cold, and when we returned from the funeral, the woman who had kept Alex for the day told us she was truly concerned about the baby. Alex was horribly pale, her eyes blank. Even to me, it was obvious she had never been so sick, so we went directly to the emergency ward of the nearest hospital, in Danbury. The doctor on duty examined Alex and said she certainly did have herself a little cold. He gave us a prescription that cost $1.69. I remember that very well. Even in 1972 I didn’t know there were any prescribed medicines in existence that only cost $1.69.

  That, as much as anything, assured us that Alex was going to be fine in another day or two.

  But the next day, even with the $1.69 wonder drug, she grew worse. Luckily, by then Carol had begun to question the infallibility of medical personnel. It would take me a while longer. Carol took Alex to her regular pediatrician, and this time he diagnosed a serious case of double pneumonia and immediately admitted her to Danbury Hospital. One of the doctors who examined her there thought she showed the classic symptoms of cystic fibrosis and decided to test for that. Since 1953 there has been a special examination for the disease, which is known as “the sweat test,” and while we were waiting for the results, I went to the encyclopedia and read about this cystic fibrosis. To me, at that point, it was one of those vague diseases you hear about now and then, sounding like some kind of clinging vine or a guy who kicks field goals with the side of his foot for the Kansas City Chiefs. I was very glad when the sweat test came back indisputably negative, because I had read that cystic fibrosis was fatal. Of course, I was not all that surprised; certainly no child of mine was going to have a fatal disease.

  Then, after the weekend—hospitals just limp along on weekends, like the peacetime army or railroads—the hospital got around to doing all sorts of other tests on Alex. Soon enough, though, it was apparent that the doctors were really just fishing around. One day they were checking kidneys, the next day the brain.

  It was Carol who finally had the good sense to say, “Frank, we’ve got to get Alex out of here.” Carol is the one with the wise head in the family, although most people might not immediately appreciate this inasmuch as she is so pretty. She is a dead ringer for the actress Linda Evans, who has become very famous recently as the star of “Dynasty,” one of those prime-time soap operas where everybody is devious and scheming. But Carol’s character is not at all that
of Linda Evans’s TV milieu. She is clever, but direct.

  We took Alex out of Danbury Hospital. Since she had defied diagnosis, we decided we had to go to the place everybody recommended, Children’s Hospital in Boston. Even then, in 1972, Arabs were taking their children there. My uncle, who was a physician in Hartford, knew the chief of staff at Children’s and made the arrangements. The volunteer fire department in the little town where we lived then—Redding, Connecticut—took Alex and Carol up in the town ambulance, for free. I drove to Boston, stopping in Rhode Island to drop Chris off with Carol’s sister, his Aunt Gail. He was still a couple months short of his third birthday, couldn’t appreciate the distressing situation, and, in fact, rather enjoyed the adventure of a visit to his cousins.

  Everything was finally getting all straightened out. It was under control. Alex was going to get the medicine she needed for whatever she had and be just fine, ever after.

  And, in fact, by the time I arrived at Children’s, she had already been diagnosed.

  She had cystic fibrosis.

  There was no question. She had it. She had cystic fibrosis. They had just botched the sweat test at Danbury.

  So, there it was. And things were moving very fast. The doctor called us into his office, and, after some consoling small talk, he spoke very frankly. I appreciated that. He told us he was sorry, but Alex would surely not live more than a few more days.

  “There is no chance?” Carol asked.

  “Yes, some. But very little. I don’t want to mislead you,” he said. “If by some … miracle, your baby is able to survive this crisis, I’m afraid that so much damage has been done to her lungs—so much deterioration—that we could never expect any sort of real recovery. At best, then, I don’t believe she can live beyond two years.”

  He paused and let that sink in. Neither Carol nor I said anything; there wasn’t anything to say. That was that.

  Then the doctor leaned back in his chair. He wasn’t just thinking. I could see that he was trying to decide whether or not he should tell us something. After a while, he decided he would, and he brought himself forward again, closer. “I know you don’t know me,” he began, “but this may be some consolation. My wife and I lost a child once too. And she gave us a great deal of love and joy before she died, and that made it much harder for us. But the point is: We survived. We went on. You see—I’m here. And you’ll go on too. It’ll be horrible. But you will overcome this.”

  We thanked the doctor for those words, but, at the moment, I don’t think they registered. It was only with time that I came to understand them, and appreciate them. There was, however, something symbolic about that encounter, because, as the years passed, I was surprised to learn how many parents have lost children. There are more than you would imagine. But they are something of an underground, and you don’t hear much about them, I guess, unless you find yourself in the same situation.

  I think many of us have convinced ourselves that children don’t die anymore, not in the latter half of the twentieth century, not in the United States of America, and certainly not in the suburbs. No, never in the suburbs. But some children still do die, despite what we tell ourselves, and this makes it all the more confounding for us when an Alex confronts us with her dying and her death. It is almost as if she had no business doing that to us.

  Chapter 4

  The doctor asked us next how we felt about keeping Alex alive if all hope ran out, if it were merely a matter of prolonging physical life. This was not difficult for us to deal with; neither of us wanted her kept alive without purpose. Besides, I think I had already begun to think of Alex as being dead.

  There just didn’t seem to be any other attitude to fall back on—safely, anyway. Alex was so sick, and also, I was so frightened. Here she was—this hideous, scrawny little mess. Her eyes filled up her whole face, and even then, going into her fifth month of life, she weighed barely a pound more than she had when she was born. There was nothing there, no place even for them to stick the needles. Finally, in desperation, they did find one vein they thought they could use. It was on her head, though, and the only way they could hold the IV in was by taping a paper cup from the cafeteria to her shaven skull. Somehow, this held the needle. It also gave Alex a crazy resemblance to that little kid in the old Coca-Cola advertisements, the one who wore a bottle cap for a hat.

  I didn’t know Alex yet. She was still so young, and, of course, she had always been sick. I guess that was the blessing. What frightened me was that she would survive this, and then I would get to know her, and then, then she would die and hurt me. That scared me more than the possibility that she might die immediately. I remember lying in the bed next to Carol that night, talking about this, about what we would do if Alex died. That would be God’s will. If she lived to die some other time, it would be my distress. I fell off to sleep, praying that God’s will be done.

  In the next couple days, Alex did not do what she was supposed to—she did not die. In fact, she stabilized to the point that they moved her off the aisle. In the infants’ ward the cribs were moved around all the time, with the most critical cases placed on the aisle, where they could be best monitored. When Alex had first come in, after the sweat test, they had put her on the aisle, right in the center of things, but then, after a few days, when she did not die, they moved her down the row a crib or two.

  We would come by and stare at her. She would stare back, and I assume she recognized us. Once I said, out loud, “Alex, are you going to die?” She didn’t look any better. She was still this scarecrow of a child, seven pounds of bones, but for the first time it seemed that there was some shadow of expression on her face. It was not only a mask of pain and doubt.

  A couple days later, when I came to the hospital first thing in the morning, Alex’s crib had been moved back to the aisle. She didn’t look any worse—the IV was still sticking out of her head, taped onto that crazy brown cafeteria cup—but I knew something must have gone wrong, or they wouldn’t have moved her back out to the aisle.

  The nurse came by then. She was the first of many I learned to appreciate. I said, “Miss Sarr, what’s the matter with Alex now?”

  “Oh, nothing, Mr. Deford,” she replied, and rather gaily.

  “But you’ve moved Alex back here, back out to the aisle.”

  “I must tell you about that,” she said. “A couple of the other nurses and I were comparing notes, and we all agreed that there was something special about your baby.” She looked down at Alex and smiled. Alex seemed to be looking back, checking things out. “As sick as Alex is, we discovered that she really didn’t like it when we moved her crib off the aisle and down the row. She obviously liked it much better right here, where she could see everybody walking by, be right in the middle of all the activity. Her condition really started to decline when we moved her over there. So last night we decided we better get her back here, on the aisle, and she’s much better now.”

  I was struck dumb. When Miss Sarr moved on, I cried for Alex—for her—for the first time. Oh, I’d cried before about this. I’m one of those people who cry all the time. I cry at weddings. I cry when people lose on TV quiz shows. I cry when people win on TV quiz shows. But I had never actually cried for Alex before, for her chances. But then … to understand that this little thing cared that much for life, even if she didn’t know anything for certain about it except that it hurt all the time. From then on I wanted her to live, because Alex had become a whole, real person.

  I never let myself hide behind God’s will again either. Other things of God’s were suddenly more important to me: I wanted so much for Alex to see flowers. I don’t know why this mattered all of a sudden, but it did. When she was born, at the end of October, all the flowers were gone, and it just didn’t seem right that she should die before she ever saw anything bright and fine and lovely, instead of the inside of a crib, the dark and cold of winter, and needles and pain.

  A couple days later I went back home and tried to start up a working
life again. Chris stayed in Rhode Island, and Carol moved in with her cousin Jane in Boston. In Redding it was just me and the dog, Chaucer, who could sit up and beg. It was still bitter cold, but oil was not a big deal then, so I turned up the heat and lit a fire to boot, fed Chaucer, had a couple of bourbons, and then wrote a letter. It said:

  March 6, 1972

  Dear Alexandra,

  I write this for myself, really, and not to you, but for you and me both.

  Someday, years from now, I will give you this—perhaps when you marry or when you have your first child.

  It is late now, and I am tired. I just came back here, to your first home, in Redding, Connecticut, from Boston, where you are still in the hospital, and where they say you might yet die. But if I can pray for one thing in my life, it is that you will be back here soon, before spring comes, and then you will grow up smart and clever and pretty and happy, and strong and healthy too.

  You must see spring, Alex. And the next spring, and the one after. And you will always have the advantage over everyone else because each spring will be more glorious to you because each spring will find you better.

  And one best spring, when the cold goes away, and the wind blows over the fresh green grass, and the robins bring our dreams back, then you will be well. And then you and I will walk on the clover and peer through the dogwood back to 1972, and laugh together that ever I worried that you might not come home, and grow up.