Melanie, Bird with a Broken Wing

Beth Harry

• Editore: Brookes Publishing
• Anno: 2013
• ISBN:
  9781598572872
• Argomento: Éducation
• Categoria: Éducation inclusive

Gripping, raw, and beautiful, this book reveals the struggles and rewards of caring for a child with severe disability and helps professionals work more sensitively and effectively with families of children with special needs. Written with grace and candor by special education professional Beth Harry, the book chronicles the life of her daughter, Melanie, who was born with a rare form of cerebral palsy and died less than 6 years later.

Captivating the reader from page one, Dr. Harry illuminates the full spectrum of her parenting experiences—from the day her "little bird" came into the world to the day she left. Readers will come away with a deep understanding of

• the complex emotions that parents experience as they adjust to life with a child who has special needs
• the practical and emotional aspects of supporting a child with feeding difficulties, vision impairment, and limited motor skills
• the joy parents experience when their child begins to communicate and make personal connections
• the lasting impact a professional's words can have on a parent, and the need to provide positive support that allows a child to reach her full potential
• the services, therapies, and interventions that improved Melanie's quality of life-and how they've changed since her story began in the 1970s

Ideal for use as a supplemental text in courses for preservice early interventionists, early childhood special educators, special educators, and health professionals, this book gives readers an unforgettable inside look at what families experience when their child has a disability—and how to meet their needs as their child grows. And, a Reader's Guide is included! Perfect for use in the classroom or in book clubs, the thought-provoking discussion questions help professionals absorb the book's lessons and apply them to everyday practice with families.

Eye-opening and inspiring, Melanie, Bird with a Broken Wing will leave a lasting impression and will, as Dr. Harry urges, prepare readers "to believe the messages of their hearts as they make professional decisions."

Chapter 1

WITH A WHIMPER

Clive said that his first moments of fear came when he saw the ash-gray color of her skin. My senses were not so sharp; having no idea of what a newborn baby should look like, I thought her strange but beautiful.

They said, “It's a girl!” But I felt no surprise, only a quiet fulfillment at receiving confirmation of what I had known all along. The doctor laid her on my stomach, and while he cut the cord that for 9 awesome months had bound her to me, I fondled the tiny down-covered head.

Suddenly, I realized that we were all waiting, and someone said something about a cry. After an interminable moment, there was a small sound. There was relief in the room, but I said, “That was a cry?”

And they said, “Yes, it's okay,” and, I believe, some other reassuring comments. But my moment for fear had come, for I knew that my baby's first sound had been scarcely a whimper. The next shock was her weight. Four and a half pounds seemed very little for a full-term baby, but as I was wheeled out of the delivery room, I allowed myself to be comforted by the doctor's assurance that “the baby's fine.” For the next hour or so, Clive and I talked. I have no recollection of what we said. Then he left, and I slept.

Later that night, on his return, it was Clive who said, “Where is she? I want to see her,” and went directly to the nursery. I felt no inclination to see her, yet I do not recall being aware of harboring any specific fear or sense of her being in danger.

I can only surmise that the fear had gone underground, for the next afternoon, almost 24 hours after her birth, I had made no attempt to see my baby. My friend Ann arrived, her eyes filling with joyful tears at the news that I had my much-longed-for daughter. It was then that I finally roused myself and went to the nursery.

She was more beautiful than I had remembered, with no fat or baby wrinkles to hide or distort the delicately chiseled nose, mouth, and high wide cheekbones. Her face was exquisite, but around the tiny neck hung layers of thin loose skin such as one might expect in an old woman. Her body was perfectly formed and in proportion to the tiny head, and her skin, by then benefiting from the incubator's oxygen, a rich, dark brown.

She lay in her glass cubicle like a fragile china doll, her movements slight and her breathing imperceptible, and as I watched her, fear closed an icy hand around my heart. It was not until that night, however, that my fear became specific. I went to the nursery just as one of the midwives was trying to feed her, and I was taken aback at the sight of the diminutive little creature lying passively as the nurse tried to get drops of milk into her mouth from a tiny pipette. I watched, my terror rising, as I saw that the drops seemed to collect in her mouth and then dribble back out, and that, in a matter of minutes, the little forehead had taken on a purplish-gray hue. The nurse explained that the baby could not do without the artificial oxygen supply for more than a few minutes and put her back into the incubator, saying that she would have to try again later.

I left the nursery, moving as through a nightmare. All I knew was that my baby was frighteningly weak, could scarcely breathe by herself, could not suck, and apparently could not even swallow!

As I woke the next morning, I knew that fear had taken over; no longer a vague sense of something being wrong, it had hardened into a lump that seemed to sit at the very center of my being, and I knew then I was fearful for myself, fearful of the painful reality that I saw standing in front of me waiting to be grappled with. I could not do it! I could not cope with this!

I went to the nursery, and there she was, beautiful and still, and the words that filled my mind remain one of my most terrible memories: You are beautiful, but if you're going to hang around and give me trouble, I'd rather you died.

The words left my mind as quickly as they had entered, but I knew that they reflected a seed of resentment deep within me.

Chapter 2

MELANIE

That was Wednesday morning, and I knew the pediatrician had been called in the night before, but we had, until then, been given no word of what might be wrong with the baby. We had decided to call her Melanie, but I kept referring to her as the baby. It was Clive who said, “Well, she's got a name now, let's use it!” And for him, from then on, she was Melanie. I knew only that she was not whom I had expected.

Finally I learned that my obstetrician would be coming to discuss the pediatrician's opinion with me, and he arrived that night, gentle and sober faced (up to that point he had been reassuring, almost jovial: “Baby's fine, just small”). His opening and parting words are the ones that remain with me verbatim. “Dr. McDowall's not happy about the baby,” and “I know, it's worrying.”

In between those two comments he talked, with a gentleness I had not expected from him, about the fact that she was underweight and underdeveloped for a full-term baby, with apparently immature respiratory and feeding systems, but that as she gained strength, these would probably improve. She was certainly weak, and it was too soon to attempt a prognosis. He spoke in a very general vein.

I can remember asking two questions: whether her brain might be damaged and whether there was danger of her becoming blind as a result of too much oxygen in the incubator. To the first, he replied that it was too soon to tell but that there could be that possibility. Insofar as she seemed generally underdeveloped, he said that this could possibly also be true of her brain development but that I should try not to worry about that yet. To the second question, he was very reassuring, explaining that he had just personally checked the oxygen-regulating system of the incubator, that it was correctly set, and that the oxygen-induced blindness of which I had heard was a phenomenon common to the early days of incubators before babies' oxygen requirements were properly understood.

Looking back, I realize that this conversation was, in fact, a preparation session for more painful news that would have to come later. It was an effective preparation, and it was kindly done.

The rest of that week is hazy in my memory. During the days I was exhausted and, at nights, wakeful in spite of the sedatives they gave me at bedtime. My bed was by the window, and I slept with the curtains open so as to see the outline of the hills whenever I opened my eyes. Their silhouette imprinted itself indelibly on my memory, and the words of the ancient psalmist filled my mind nightly as the hills became for me a symbol of the strength I would need in the days ahead: “I will lift up mine eyes unto the hills, from whence cometh my help, my help cometh from the Lord, who made Heaven and earth.” (Psalm 121:1–2)

Chapter 3

EMPTY HANDS

Ican think of no experience more disappointing than returning home empty-handed after giving birth to a baby. After 9 months of waiting, hoping, and fantasizing, a woman suddenly empty-bellied reaches aching arms outward to relieve the womb of its burden, and—nothing.

Of course this overstates my case: a woman whose baby has died is precisely in this situation. My baby was simply left behind for a while. Yet I felt robbed, cheated by my own body. The body I had always loved, enjoyed, and trusted to do its work efficiently and with ease had inexplicably let me down. I was to go home with an empty womb, empty hands, and a heart filled with fear.

This was what overwhelmed me on my last night in the maternity clinic—the next day I would go home without my baby. All week, I had been outwardly calm, but my tears were rising. Venus, the midwife in charge, came to sit with me and said, “We know you're brave, we can see that, but there's also a time for tears.” It had been years since I had cried in someone's arms (like most adults, I had learned to prefer crying alone), but her kindness released me, and that night, I wept like a child in her mother's arms.

So on Saturday morning Clive came for me and we went home. Clive's niece, Paula, had come to stay with me for a few days, and I think she was taken aback to find me on the edge of panic.

I was on the edge of panic. Panda, whom Clive always referred to as “that hell of a mad dog,” rushed to greet me and threw his paws against my stomach; I screamed in terror at the silly dog whose attempt at friendliness I perceived as a hostile threat to my disillusioned and vulnerable body.

For me, the most effective way of controlling fear has been to put it into words and to speak those words aloud, if only to myself. It is as if the spoken word gives form to a chaotic jumble of fears and offers a sense of control, however illusory, over a disordered world. Fortunately, I had people I felt I could talk to. Clive's niece, Paula, was one of the first people to whom I expressed what fears I was aware of, and I believe it was in an early conversation with her that I first expressed the feeling that I could cope with just about any problem my baby might have except mental retardation—the possibility of that seemed the most devastating of all.

In those early days, it was more difficult to talk to Clive about specific fears, probably for two reasons. First, I felt a reluctance to burden him further, knowing that he too was carrying his bundle of fears within him and struggling to keep them under control. Second, I respected his method of gaining control (almost opposite to mine), by appearing to keep his fears at bay until the extent of their reality becomes clear—that is, he preferred not to openly discuss fears while they were at the speculative state, but to wait until he knew exactly what he needed to be afraid of and then decide how to act. How different people can be from each other! For him, it was the possibility of action that brought a feeling of control; for me, it was the spoken awareness of whatever haunted me.

So in those days, Clive and I discussed mainly the practical, day-to-day issues of our situation, and there were many of these.

On the night I returned home, Clive went back to the maternity clinic to see how Melanie was and was told that tube feeding had been started since none of the normal methods of feeding Melanie had worked so far. This first conjured up for me a vision of endless feet of tubing attached to a bedside drip, such as one sees on the medical soap operas on television, and which, at a later date I would actually see administered to Melanie. But the distinction was soon made between such intravenous tube feeding and this much simpler method of tube feeding of which I would also, at a later date, gain firsthand experience.

Beth and Melanie at 2 weeks with feeding tube

This turned out to be the insertion of a tiny polythene tube into the nose, down the esophagus, and into the stomach, the outer end of this tube reaching only as far as the baby's cheekbone and secured above her upper lip with a strip or two of tape. Nevertheless, it was a frightening sight—the strip of tape seeming to cover half the miniature face, and the very idea of such an artificial method of feeding emphasized the terrible inadequacy of this baby's feeding system.

But that night also brought cheering news, that although she was still being kept in the incubator for extra warmth, the artificial oxygen supply had been withdrawn, and Melanie was now breathing the same air as the rest of us! I was encouraged and went to sleep with my first recognizable touch of hope.

Chapter 4

THE SWEET BIRD

The next morning, Sunday, marked the beginning of the most difficult period of my life up to that time: a period characterized by anxiety such as I had never imagined and an indecipherable mixture of hope and hopelessness.

Mornings were the worst—waking with a jolt into the cavern of anxiety that had become my world and surfacing only to encounter an onslaught of chaotic fears posing as reasonable questions: Was Melanie all right? What kind of night might she have had? Would they be able to take the tube out today? Would she have gained an ounce in weight? Would they say she might soon be able to come home? Then, fumbling my way through morning rituals in order to arrive at the only moment that mattered—seeing Melanie, seeing her alive and beautiful, and maybe, just maybe, a fraction stronger than the day before.

Besides visiting Melanie, there was one other activity that held any meaning for me—the struggle to produce breast milk for her. In the maternity clinic, my milk supply had started well, and I had been much encouraged by the midwives' emphasis on breast feeding and by their assurance that Melanie would receive whatever milk I could produce. So with the help of a little hand pump and two or three books on breast feeding, I embarked on a schedule of pumping and pumping and pumping!

Pump as I might, the milk supply dwindled from day to day, but I kept at it despite pessimistic comments from my obstetrician and active discouragement from the pediatrician (with whom up to then I conversed only by phone). I understood that there was little hope of the supply keeping up without the stimulation of the baby's sucking and in light of my state of anxiety (how I worked at relaxing!). What I did not understand, and I think the pediatrician did, was that the baby would probably never be able to suck well enough to stimulate an adequate supply.

But even if I had known this, I would have kept on pumping as though my life depended on it. I knew even then that I was doing this more for myself than for Melanie. There was the hope of contributing to her health, at least to the easing of her already poorly functioning bowels, but I knew that the amount of milk I was producing was not enough to be really effective. What I was really contributing to was my own sanity or, to be more precise, the maintenance of my self-image.

My self-confidence, normally pretty secure, had been dealt an unexpected blow: It had never occurred to me that I would be anything but a successful mother. True, conception had proved more difficult than I had expected, and after a hemorrhage at 10 weeks, my pregnancy had seemed shaky for a couple of months—the uterus growing very slowly, they said. But as soon as the baby started moving, I had put all the fears behind me and had plunged my whole being into the joy of carrying, protecting, and nourishing new life. I would be the natural mother—loving and confident—through one of life's most complex yet simple experiences. After all, wasn't I well equipped for motherhood? At 30, I felt myself moving surely into a phase of consolidation. My master's degree behind me, I was professionally and socially selfassured and inwardly self-accepting, and life seemed mine for the taking. I was in love with life and never doubted that life would forever be in love with me!

Now, in the space of a week, it was becoming evident that life, or my self, had let me down; things were not going according to plan, and a feeling of failure, an unfamiliar feeling for me, was beginning to set in. How could this be? Reproduction is one of life's givens, one of life's most basic activities; yet I had produced something less than perfect—a beautiful little weakling, a flawed and inadequate version of myself.

Surely the least I could do now was produce a modicum of nourishment for this little creature. And so I pumped and pumped!

Besides the presumably therapeutic value of this activity, there was the obvious fact that it gave me something to do. So I quickly established a daily routine; arriving at the clinic by 8:00 a.m., I would spend 2–4 hours in the nursery, admiring, holding, talking to, and inwardly weeping for my beautiful baby, Melanie. How the nurses put up with my continual presence in their small nursery for 8 weeks I cannot imagine. But they were unbelievably kind and encouraged me to develop confidence in my ability to handle Melanie and to relate to her, always providing me with a breast pump and bottle to express some milk while I was there.

Afternoons were spent at home, resting and doing my 3- to 4-hourly milk expression and reading anything I could get my hands on that related to childbirth, infant development, birth defects, parental attitudes, and so on. By 5:00 or 6:00 p.m., my anxiety level would have worked its way up again, and after a rushed supper Clive and I would set out to the clinic for anything from half an hour to 2 hours.

So my days were a rising and falling wave of anxiety and relief—anxiety that mounted steadily as long as I was away from Melanie and receded for as long as she was within my reach. There seemed to be no other concern in life but Melanie.

Clive was my rock from day to day, listening with patience to my recounting of every movement she had made, every sound, every ounce of milk consumed, and every ounce of weight gained or, as was often the case, lost. He was not as comfortable as I in the maternity clinic, surrounded by new mothers and smiling, chattering grandparents and fathers, and naturally was reluctant to take advantage of the privilege of spending time inside the nursery where there were normally only mothers, nurses, and newborn infants. So he spent his time there quietly watching Melanie through the nursery window and, whenever she was within earshot, whistling at her. It was this whistle that, some 7 months later, would finally elicit Melanie's first smile.

While Clive and I struggled within ourselves, Melanie fought to get a hold on life. Somehow, we never doubted that she would continue to live; yet her hold on life was tenuous, marginal, and as Clive ke...