The Child Who Never Grew

I

I HAVE BEEN A long time making up my mind to write this story. It is a true one, and that makes it hard to tell. Several reasons have helped me to reach the point this morning, after an hour or so of walking through the winter woods, when I have finally resolved that the time has come for the story to be told. Some of the reasons are in the many letters which I have received over the years from parents with a child like mine. They write to ask me what to do. When I answer I can only tell them what I have done. They ask two things of me: first, what they shall do for their children; and, second, how shall they bear the sorrow of having such a child?

The first question I can answer, but the second is difficult indeed, for endurance of inescapable sorrow is something which has to be learned alone. And only to endure is not enough. Endurance can be a harsh and bitter root in one’s life, bearing poisonous and gloomy fruit, destroying other lives. Endurance is only the beginning. There must be acceptance and the knowledge that sorrow fully accepted brings its own gifts. For there is an alchemy in sorrow. It can be transmuted into wisdom, which, if it does not bring joy, can yet bring happiness.

The final reason for setting down this story is that I want my child’s life to be of use in her generation. She is one who has never grown mentally beyond her early childhood, therefore she is forever a child, although in years she is old enough now to have been married and to have children of her own — my grandchildren who will never be.

The first cry from my heart, when I knew that she would never be anything but a child, was the age-old cry that we all make before inevitable sorrow: “Why must this happen to me?” To this there could be no answer and there was none. When I knew at last that there could never be an answer, my own resolve shaped into the determination to make meaning out of the meaningless, and so provide the answer, though it was of my own making. I resolved that my child, whose natural gifts were obviously unusual, even though they were never to find experience, was not to be wasted. If she could not make the contribution she should have made to her generation through her genius for music, if her healthy body was never to bear fruit, if her strong energies were not to be creatively used, then the very facts of her condition, her existence as it was and is today, must be of use to human beings. In one way, if not the other, her life must count. To know that it was not wasted might assuage what could not be prevented or cured.

This resolve did not come to me immediately. I grew toward it, but once I had reached it I have held to it through all the years of her life. I have let it work in quiet ways, dreading the cold eyes of the curious. Now, today, I will forget those whom I dread, who, after all, are very few. I will remember the many who are kind, who will understand my purpose in telling this story, who will want to help to fulfill this purpose because it is their purpose too.

I am always moved, with grateful wonder, by the goodness of people. For the few who are prying or meanly critical, for the very few who rejoice in the grief of others, there are the thousands who are kind. I have come to believe that the natural human heart is good, and I have observed that this goodness is found in all varieties of people, and that it can and does prevail in spite of other corruptions. This human goodness alone provides hope enough for the world.

I have sometimes wondered, as the years passed, whether the moment would come when I might feel that my purpose for my child must include the telling of her story. I dreaded this, and do dread it. Nevertheless, the time has come. For there is afoot in our country a great new movement to help all children like her. It is too late, of course, for her to be helped, but it is not too late for many little ones, and surely for others yet to be born. For we are beginning to understand the importance and the significance of the mentally retarded person in our human society. Almost one person in every hundred is or will be mentally retarded,¹ and of these the majority are retarded from non-inherited causes. The old stigma of “something in the family” is all too often unjust.

The total number of retarded children is not large in proportion to the whole population, and yet it is enough to cause trouble everywhere. Homes are unhappy, parents distraught, schoolrooms confused by the presence of these who for no fault of their own are as they are. As parents die or cannot care for them, as teachers give them up, these children drift helplessly into the world, creating havoc wherever they go. They become the tools of those more clever; they are the hopeless juvenile delinquents; they fall into criminal ways because they know not what they do. And all they do is in innocence, for of God’s many children these are the most innocent.

I rejoice in the dawn of a better understanding of such children, for the public attitude until now has been a sorely mistaken one. Parents have been bewildered and ashamed when their child is backward, when he cannot learn in school, when perhaps he cannot even learn to talk. It has been a misfortune to be hidden. Neighbors whisper that so-and-so’s child is “not right.” The family is taught to try to pretend that poor Harry or Susie is only slow. The shame of the parents infects all the children and sorrow spreads its blight. The child himself, poor little one, feels, though he cannot comprehend, his own inferiority. He lives in surrounding gloom. His mother cannot smile when she looks at him, and his father looks away at the sight of him. In spite of their tender love for him — for the honor of the human heart, it can passionately protect the helpless creature who is its cross — the child understands enough to know that there is something unfortunate about him. His shadow falls before him, wherever he goes.

Now, thank God, the shadow lifts. Wise men and women are beginning to reason that it is only common sense to accept the mentally retarded person as part of the human family, and to educate him in the things he can do, so that he may be happy in himself and useful to society. That this may be done, the primary work of research must progress as it never has. We must somehow discover why it is that so many people do not develop mentally to their full capacity. There must be remediable causes and certainly there are preventable causes. We know, for example, that if a women has German measles in the first three months of pregnancy, her child may be born mentally defective, but we do not know why. We must know why. The Mongoloid child can appear in any family. He is really an unfinished child and is usually a first or last child. We must find out what conditions in the mother cause this child.² It is not necessary that children be born never to grow to their fullest selves. The windows are opened, at last, upon this dark corner of human life and the light shines upon the children’s faces and into the hearts of their parents.

That my child, therefore, may have some small share in creating this new light, I tell her story. She cannot know what she does, but I who am her mother will do it for her and in her name, that others like her may have the benefits of a fuller knowledge, a better understanding. It will not be easy to tell it all truthfully, but it is of no use to tell it otherwise. Perhaps when it is finished there will be comfort because it is told for a high purpose.

I must go back into the early years of my young womanhood — no, even before that. When I was a little girl myself, not more than seven years old, living in China, I had an awakening of the spirit. Until then I suppose I was the usual selfish creature, thinking of play and of nothing else except having my own way. I had few children to play with and one of my dear friends was a gay young American woman, who lived for a very short time next door to us. She was married, and during the few months she was our neighbor she had a baby girl born to her. It was my first experience of an American baby and of all the tender care that the average American baby gets.

Every morning I was the attendant at the bath. I poured the water and warmed the towel and handed the mother the little garments, one by one. I was allowed a moment of my own, when the fair-haired blue-eyed little baby, smelling sweetly of soap and freshness, was put into my arms. That was the height of the day for me. I can remember even now, even after I have held so many babies in my arms, babies of many colors and races, the joy of that first little one. I might have grieved very much when the transient neighbors went their way, had not my own little sister been born, fortunately, that same spring in the heart of the vast old city on the Yangtze River which was then my home. I busied myself mightily about our own baby. My mother was desperately ill after the birth, and the chief care of the baby fell upon our old Chinese amah and me. I was so happy I did not know how near my mother was to death.

I have begun this story so long ago because I can see now that I loved my child long before she was born. I wanted children of my own, as most woman do, but I think my intense love of life added depth to natural longing. Something certainly I learned from the Chinese, who value children above all else in life. The Chinese love children for their own sakes and beyond. Children mean the continuity of human life, and human life is wonderful and precious. I absorbed the atmosphere in which I was reared.

My child was born in the height of my young womanhood. I was full of strength and vigor and the enjoyment of life. My life lay in places which might seem strange to my fellow Americans but which were not strange to me. My home then was outside a small mud-walled town in North China. From my windows I looked over miles of flat farm land, green with wheat and sorghum in the summer, and in the winter the color of dust. Springtimes were loveliest, for above the young green wheat mirages shimmered. We had neither lakes nor mountains near, but the mirages brought them to us. They hung like fantastic dreams above the horizon. It was difficult to believe that they were not real.

Like every young woman, I had many dreams. There were books that I wanted to write when I had lived enough to know life. Life I had always wanted in plenty and overflowing, and I think, looking back, that I always ran to meet it. Certainly I always wanted children. So when I knew my first child was to be born, one year in the spring, my joy rose to the height of my dreams. I did not know then that there was to be only one. I did not think of such a possibility. Everything had always gone well with me, all my life. I was one of the fortunately born. I took good fortune for granted. I saw my house full of children.

I remember so well the first time my little girl and I saw each other. It was a warm mild morning in March. A Chinese friend had brought me a pot of budding plum blossoms the day before, and a spray of them had opened. That was the first thing I saw when I came out of the ether. The next thing was my baby’s face. The young Chinese nurse had wrapped her in a pink blanket and she held her up for me to see. Mine was a pretty baby, unusually so. Her features were clear, her eyes even then, it seemed to me, wise and calm. She looked at me and I at her with mutual comprehension and I laughed.

I remember I said to the nurse, “Doesn’t she look very wise for her age?” She was then less than an hour old.

“She does, indeed,” the nurse declared. “And she is beautiful too. There is a special purpose for this child.”

How often have I thought of those words! I thought of them proudly at first, as the child grew, always healthy, always good. I remember when she was two months old that an old friend saw her the first time. The child had never seen a man with a black mustache before and she stared for a moment and then drew down her little mouth to weep, though some pride kept her from actual tears.

“Extraordinary,” my friend said, “She knows already what is strange to her.”

I remember when she was only a month older that she lay in her little basket upon the sun deck of a ship. I had taken her there for the morning air as we traveled. The people who promenaded upon the deck stopped often to look at her, and my pride grew as they spoke of her unusual beauty and of the intelligence of her deep blue eyes.

I do not know where or at what moment the growth of her intelligence stopped, nor to this day do we know why it did. There was nothing in my family to make me fear that my child might be one of those who do not grow. Indeed, I was fortunate in my own ancestry on both sides. My father’s family was distinguished for achievement in languages and letters, and my mother’s family was a cultivated one. On her father’s side my child had a sturdy ancestry, which had occasionally produced persons of distinction. I had no fears of any sort — indeed, I was almost too innocent of fear. I had seen in my youth only one defective child, the little son of a missionary, and he had made no impression on me beyond one of love and pity. Of Chinese children of the sort I had seen none. There seem to be few, and such as there are remain at home, carefully tended. Perhaps, too, they die young. At any rate, no young mother could have been less prepared than I for what was to come.

My little daughter’s body continued its healthy progress. We had left North China by then, and were living in Nanking, which, next to Peking, perhaps, is China’s richest city in history and humanity. Though my home was inside the city walls, it was still country living. Our house was surrounded by lawn and gardens, a bamboo grove and great trees. When the city walls were built, centuries ago, enough land was enclosed so that if the city were besieged, the people would not starve. Our compound was surrounded by farms and fish ponds.

It was a pleasant and healthy home for a child. She was still beautiful, as she would be to this day were the light of the mind behind her features. I think I was the last to perceive that something was wrong. She was my first child, and I had no close comparison to make with others. She was three years old when I first began to wonder.

For at three she did not yet talk. Now that my adopted babies have taught me so much, I realize that speech comes as naturally to the normal child as breathing. He does not need to be taught to talk — he talks as he grows. He hears words without knowing it and day by day increases the means of conveying his widening thoughts. Still, I became uneasy. In the midst of my pleasant surroundings, in all the fresh interest of a new period in Chinese history when the Nationalist government was setting itself up with such promise, I found life exciting and good. Yet I can remember my growing uneasiness about my child. She looked so well, her cheeks pink, her hair straight and blond, her eyes the clear blue of health. Why then did speech delay!

I remember asking friends about their children, and voicing my new anxiety about my child. Their replies were comforting, too comforting. They told me that children talked at different ages, that a child growing up in the house with other children learned more quickly than an only child. They spoke all the empty words of assurance that friends, meaning well, will use, and I believed them. Afterward, when I knew the whole tragic truth, I asked them if they had no knowledge then of what had befallen my child. I found that they did have, that they had guessed and surmised and that the older ones even knew, but that they shrank from telling me.

To this day I cannot understand their shrinking. For to me truth is so much dearer than any comforting falsehood, so much kinder in its clean-cutting edge than fencing and evasion, that the better a friend is the more he must use truth. There is value in the quick and necessary wound. Thus my child was nearly four years old before I discovered for myself that her mind had stopped growing. To all of us there comes the hour of awakening to sad truth. Sometimes the whole awakening comes at once and in a moment. To others, like myself, it came in parts slowly. I was reluctant and unbelieving until the last.

It began one summer at a seashore in China, where the waves come in gently even in time of storm. It had been a mild and pleasant summer, shore set against mountains. I spent the mornings with my child on the beach and in the afternoons sometimes we went riding along the valleys on the small gray donkeys which stood for hire at the edge of the beach.

The child had now begun to talk, only a little, but still enough to quiet my fears for the moment. It must be remembered that I was wholly inexperienced in such children. Now my eyes can find in any crowd the child like mine. I see him first of all and then I see the mother, trying to smile, trying to speak to the child gaily, her gaiety a screen to hide him from the others. But then I did not see even my own child as she really was, I read meaning into her gestures and into the few broken words. “She doesn’t talk because she gets everything she wants without it,” a friend complained. So I tried to teach my child to ask for a thing first. She seemed not to understand.

I must have been more anxious than I knew, however, for I remember I went one day to hear an American visiting pediatrician give a lecture on the preschool child, and as I listened to her I realized that something was very wrong indeed with my child. The doctor pointed out signs of danger which I had not understood. The slowness to walk, the slowness to talk, and then when the child could walk, the increasing restlessness which took the form of constant running hither and thither, were all danger signs. What I had taken to be the vitality of a splendid body I saw now might be the super energy of a mind that had not kept control of the body.

After the meeting was over, I remember, I asked the doctor to come and see my child. She promised to come the next day. I told no one of my growing fear and through that sleepless night I went over and over in my mind all the good signs, the things the child could do: that she could feed herself; that she could put on her clothes, though not fasten buttons; that she liked to look at picture books; that she understood so much more than she could say. But I did not want false comfort. I wanted now and quickly the whole truth.

The doctor came the next day and sat a long time watching my child, and then she shook her head, “Something is wrong,” she said, “I do not know what it is. You must have a consultation of doctors. Let them tell you, if they know.”

She pointed out to me the danger signs I had not seen, or would not see. The child’s span of attention was very short indeed, far shorter than it should have been at her age. Much of her fleet light running had no purpose — it was merely motion. Her eyes, so pure in their blue, were blank when one gazed into their depths. They did not hold or respond. They were changeless. Something was very wrong.

I thanked her and she went away. Thinking it over, I saw there was no reason why a stranger should stay to tell me more. Perhaps she knew no more. There is no task more difficult than to tell a parent that the beloved child will never grow to be an adult. I have done it sometimes since, and I have not allowed myself to shrink from it, but it has been hard. The heart can break more than once.

The doctors met the next day. I can still see the scene as though it took place before my eyes now. The house had a wide veranda, facing the sea. It was a glorious morning, and the sea was violet blue and calm except for the gentle white surf at the coast. The child had been with her Chinese nurse playing on the sand and wading in the water. I called and they came up the path between the bamboos. In spite of my terror, I was proud of my child as she stood before the doctors. She had on a little white swimming suit and her firm sun-browned body was strong and beautiful. In one hand she held her pail and shovel and in the other a white shell.

“She looks well enough,” one of the doctors murmured.

Then they began to ask questions. I answered them with all the honesty I had. Nothing but honesty would do now. As they listened they watched and they began to see. The shell dropped from her hand and she did not pick it up. Her head drooped. The oldest doctor, who had known my parents, lifted her to his knee and began to test her reflexes. They were weak — almost nonexistent.

The doctors were kind men and I begged them to tell me what they thought and then tell me what to do. I think they were honest in their wish to do this. But they did not know what was wrong or, whatever was wrong, how to cure it. I sat in silence and watched the child. I began to feel that they were agreed that development had stopped in the child, but did not know why. There were so few physical symptoms — only the ones I have mentioned. They plied me with questions about the child’s past, about her illnesses: had she ever had a high temperature, had she ever had a fall? There had been nothing. She had been sound from her birth and so cared for that she had never been hurt.

“You must take her to America,” they told me at last. “There the doctors may know what is wrong. We can only say there is something wrong.”

Then began that long journey which parents of such children know so well. I have talked with many of them since and it is always the same. Driven by the conviction that there must be someone who can cure, we take our children over the surface of the whole earth, seeking the one who can heal. We spend all the money we have and we borrow until there is no one else to lend. We go to doctors good and bad, to anyone, for only a wisp of hope. We are gouged by unscrupulous men who make money from our terror, but now and again we meet those saints who, seeing the terror and guessing the empty purse, will take nothing for their advice, since they cannot heal.

So I came and went, too, over the surface of the earth, gradually losing hope and yet never quite losing it, for no doctor said firmly that the child could never be healed. There were always the last hesitant words, “I don’t want to say it is hopeless”; and so I kept hoping, in the way parents have.

It was getting harder all the time for another reason. The child was older and bigger and her broken speech and babyish ways were conspicuous. I had no sense of shame for myself. I had grown up among the Chinese, who take any human infirmity for what it is. Blind people, the lame, the halt, the tongue-tied, the deformed — during my life in China I had seen that all came and went among others and were accepted for themselves. Their infirmities were not ignored. Sometimes they were even made the cause of nicknames.

For example, Little Cripple was a playmate of my own early childhood, a boy with a twisted leg. According to our western notions, it would have been cruel to call him by his deformity. But the Chinese did not mean it so. That was the way he was, literally, and his twisted leg was part of himself. There was some sort of catharsis even for the boy in this taking for granted an affliction. Somehow it was easier than the careful ignoring of my American friends. The sufferer did not feel any need to hide himself. There he was, as he was, and everybody knew him. It was better than any sweet pretending that he was like everybody else.

More than this, the Chinese believed that since Heaven ordains, it was a person’s fate to be whatever he was and it was neither his fault nor his family’s. They believed, too, with a sort of human tenderness, that if a person were handicapped in one way, there were compensations, also provided by Heaven. Thus a blind person was always treated with respect and even sometimes with fear, for it was thought he had a perception far beyond mere seeing.

All the years my child and I had lived among the Chinese we had breathed this frank atmosphere. My Chinese friends discussed my child with me easily as they discussed their own. But they were not experienced enough to know what was wrong or even that it was wrong. “The eyes of her wisdom are not yet opened,” was the way they put it. “For some persons wisdom comes early and for others late — be patient.” This was what they told me. When we walked on the narrow winding streets of our old city no one noticed when she stopped reasonlessly to clap her hands or if, without reason, she began to dance. Yes, the Chinese were kind to my child and to me. If they did notice her, it was only to smile at what they took to be her pleasure, and they laughed with her.

It was on the streets of Shanghai that I first learned that people were not all so kind. Two young American women walked along the street, newcomers from my own country, I suppose, by their smart garments. They stared at my child and when we had passed one of them said to the other, “The kid is nuts.” It was the first time I had ever heard the slang phrase and I did not know what it meant. I had to ask someone before I knew. Truth can be put into brutal words. From that day I began to shield my child.

There is no use in giving the details of the long, sorrowful journey. We crossed the sea and we went everywhere, to child clinics, to gland specialists, to psychologists. I know now that it was all no use. There was no hope from the first — there never had been any. I do not blame those men and women for not telling me so — not altogether. I suppose some of them knew, but perhaps they didn’t. At any rate, the end of each conference was to send us on to someone else, perhaps a thousand miles away.

One famous gland specialist gave me considerable hope, and we undertook a year-long treatment with dosages of gland medicine. It did my child no good, and yet I do not regret it, for from what I learned that year I was able to save another child who really needed the treatment a few years later. I saw a little boy who at four was still crawling on his hands and knees and I recognized in his symptoms — the dry skin and hair, the pallid flesh, the big ungainly weak body, the retarded mind — the need for thyroid treatment. I did not know his mother very well, but remembering the silence of my friends, I went to her and told her what I thought. There was a long moment when her flushed face showed me her inner struggle. She did not want to know — and yet she knew she must know. I went away, but afterward she did take the child to the gland specialist and he was able to help the boy become normal. That boy was not really mentally retarded. He was suffering from a thyroid deficiency. Years later the mother and I met on different soil and she thanked me for that past day. But it took courage to speak. It always does.

The end of the journey for my child and me came one winter’s day in Rochester, Minnesota. We had been sent finally to the Mayo Clinic, and day after day we had spent in the endless and meticulous detail of complete examination. My confidence had grown as the process went on. Surely so much study, so much knowledge, would tell me the truth and what to do with it.

We went at last into the office of the head of the children’s department. It was evening and almost everybody had gone home. The big building was silent and empty. Outside the window I saw only darkness. My little girl was very tired and I remember she leaned her head against me and began to cry silently, and I took her upon my lap and held her close while I listened. The doctor was kind and good. I can see him still, a tall, rather young man, his eyes gentle and his manner slow as though he did not want anyone to be hurried or anxious. He held in his hand the reports sent in from all the departments where my child had been examined, and he made his diagnosis. Much of it was good. All the physical parts were excellent. My child had been born with a fine body.

There were other things good too. She had certain remarkable abilities, especially in music. There were signs of an unusual personality struggling against some sort of handicap. But — the mind was severely retarded.

I asked the question that I asked now every day of my life: “Why?”

He shook his head. “I don’t know. Somewhere along the way, before birth or after, growth stopped.”

He did not hurry me, and I sat on, still holding the child. Any parent who has been through such an hour knows that monstrous ache of the heart which becomes physical and permeates muscle and bone.

“Is it hopeless?” I asked him.

Kind man, he could not bear to say that it was. Perhaps be was not really sure. At least he would not say he was sure. “I think I would not give up trying,” was what he finally said.

That was all. He was anxious to get home and there was no more reason to stay. He had done all he could. So again my child and I went out of the doctor’s office and walked down the wide empty hall. The day was over and I had to think what to do next.

Now came the moment for which I shall be grateful as long as I live. I suppose to be told that my child could be well would have meant a gratitude still higher; but that being impossible, I have to thank a man who came quietly out of an empty room as I passed. He was a small, inconspicuous person, spectacled, a German by looks and accent. I had seen him in the head doctor’s office once or twice. He had, in fact, brought in the sheaf of reports and then had gone away without speaking. I had seen him but without attention, although now I recognized him.

He came out almost stealthily and beckoned to me to follow him into the empty room. I went in, half bewildered, my child clinging to my hand. He began to speak quickly in his broken English, his voice almost harsh, his eyes sternly upon mine.

“Did he tell you the child might be cured?” he demanded.

“He — he didn’t say she could not,” I stammered.

“Listen to what I tell you!” he commanded. “I tell you, madame, the child can never be normal. Do not deceive yourself. You will wear out your life and beggar your family unless you give up hope and face the truth. She will never be well — do you hear me? I know — I have seen these children. Americans are all too soft. I am not soft. It is better to be hard, so that you can know what to do. This child will be a burden on you all your life. Get ready to bear that burden. She will never be able to speak properly. She will never be able to read or write, she will never be more than about four years old, at best. Prepare yourself, madame! Above all, do not let her absorb you. Find a place where she can be happy and leave her there and live your own life. I tell you the truth for your own sake.”

I can remember these words exactly as he spoke them. I suppose the shock photographed them upon my memory. I remember, too, exactly how he looked, a little man, shorter than I, his face pale, a small, clipped black mustache under which his lips were grim. He looked cruel, but I know he was not. I know now that he suffered while he spoke. He believed in the truth.

I don’t know what I said or even if I said anything. I remember walking down the endless hall again alone with the child. I cannot describe my feelings. Anyone who has been through such moments will know, and those who have not cannot know, whatever words I might use. Perhaps the best way to put it is that I felt as though I were bleeding inwardly and desperately. The child, glad to be free, began capering and dancing, and when she saw my face twisted with weeping, she laughed.

It was all a long time ago and yet it will never be over as long as I live. That hour is with me still.

I did not stop trying, of course, in spite of what the little German had said, but I think I knew in my heart from that moment on that he was right and that there was no hope. I was able to accept the final verdict when it came because I had already accepted it before, though unconsciously, and I took my child home again to China. I shall forever be grateful to him, whose name I do not even know. He cut the wound deep, but it was clean and quick. I was brought at once face to face with the inevitable.

¹[Current estimates are that about three people in every hundred have mental retardation.]

²[“Mongolism” was the accepted term for Down syndrome when The Child Who Never Grew was first published. Today it is known that the condition is caused by the presence of an extra twenty-first chromosome in a child’s cells, although what causes that extra chromosome is not fully understood. We do know that early or late birth order does not predispose a child to Down syndrome, and that it can develop as the result of both maternal and paternal factors.]