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.]
II
WHAT I AM WRITING is no unique experience. It is one common to many parents. Every retarded child means a stricken, heartsick family. I meet often nowadays with parents’ organizations, parents of mentally deficient children who are coming together in their deep need for mutual comfort and support. Most of them are young people and how my heart aches for them! I know every step of their road to Calvary.
“The schools won’t take our children,” one of them said to me the other day. “The neighbors don’t want them around. The other children are mean to them. What shall we do? Where can we go? Our child is still a human being. He is still an American citizen. He has some rights, hasn’t he? So have we, haven’t we? It’s not a crime to have a child like ours.”
No, it is not a crime, but people—teachers in schools, neighbors—can behave as though it were. You who have had a mentally deficient child know all that I mean.
When the inevitable knowledge was forced upon me that my child would never be as other children are, I found myself with two problems, both, it seemed to me, intolerable. The first was the question of her future. How does one safeguard a child who may live to be physically very old and will always be helpless? Her life would in all likelihood outlast my own. We come of long-lived stock, and though I might live to be old myself, I was borne down by grief and she had no burdens on her happy, childish mind. Worry and anxiety would never touch her. What if she lived to be even older than I? Who would care for her then? Yet there was a strange comfort in her happiness. As I watched her at play, myself so sorrowful, it came to me that this child would pass through life as the angels live in Heaven. The difficulties of existence would never be hers. She would not know that she was different from other children. The joys and irresponsibilities of childhood would be hers forever. My task was only to guarantee her safety, food and shelter—and kindness.
Yes, I have learned as the years passed to be intensely grateful for the fact that my child has no knowledge of herself. If it had to be that she could not be a fully developed human being, then I am glad she has remained a real child. The pitiful ones are those who know dimly that they are not as others are. I have seen them, too, and have heard them say humbly, “I know I’m dumb,” or, “I know I’m nuts,” or “I can’t never git married because I’m queer.” They do not fully understand even what they say, poor children, but they know enough to suffer.
Thank God my child has not been one of these! She has been able to enjoy sunshine and rain, she loves to skate and ride a tricycle, she finds pleasure in dolls and toy dishes and a sand pile. She likes to run on a beach and play in the waves. Above all is her never-failing joy in music. She finds her calm and resource in listening, hour after hour, to her records. The gift that is hidden in her shows itself in the still ecstasy with which she listens to the great symphonies, her lips smiling, her eyes gazing off into what distance I do not know.
She has her preferences for certain kinds of music. Church music, especially hymns, make her weep, and she cannot listen to them. I know how she feels. There is something infinitely pathetic in that chorus of wavering human voices raised to the God in Whom, not seeing, they must needs trust. She dislikes intensely all crooning and cheap rhythms, and in general popular music of all sorts. If someone puts on a jazz record, she seems in an agony. “No, no,” she will say. “I don’t like it.” It must be taken not only from the phonograph, but away out of the room. But she will listen to all the great old music with endless delight. When she was at home this last summer she heard Beethoven’s Fifth Symphony through entirely, sitting motionless beside the instrument. When it was finished she wanted it all over again. Her taste is unerring. By some instinct, too, she knows each one of her own large collection of records. I do not know how, since she cannot read, but she can distinguish each record from the others and will search until she finds the one that suits her mood.
I put this down because it is one of the compensations, and parents of other children like her ought to know that there are such compensations. These little children find their joys. I know one little boy—I say “little,” and yet he is a grown man in body—who gets creative pleasure from his collection of brightly colored rags. He sorts them over and over again, rejoicing in their hues and textures. He is never wearied of them. The parent learns to be grateful that pleasure finds its expression, if not in ways that benefit the world, at least in ways that satisfy and enrich the child. Quantitatively, of course, there is a difference between the bright rags and a box of paints that an artist uses. But qualitatively the two are the same to the boy and to the artist. Both find the same spiritual satisfaction.
To parents I say first that if you discover that your child cannot be normal, be glad he is below the possibility of knowing his own condition. The burden of life has been removed from him and it rests only upon you, who can learn how to bear it.
To learn how to bear the inevitable sorrow is not easily done. I can look back on it now, the lesson learned, and see the steps; but when I was taking them they were hard indeed, each apparently insurmountable. For in addition to the practical problem of how to protect the child’s life, which may last beyond the parent’s, there is the problem of one’s own self in misery. All the brightness of life is gone, all the pride in parenthood. There is more than pride gone, there is an actual sense of one’s life being cut off in the child. The stream of the generations is stopped. Death would be far easier to bear, for death is final. What was is no more. How often did I cry out in my heart that it would be better if my child died! If that shocks you who have not known, it will not shock those who do know. I would have welcomed death for my child and would still welcome it, for then she would be finally safe.
It is inevitable that one ponders much on this matter of a kindly death. Every now and again I see in the newspapers the report of a man or woman who has put to death a mentally defective child. My heart goes out to such a one. I understand the love and despair which prompted the act. There is not only the despair that descends when the inevitable makes itself known, but there is the increasing despair of every day. For each day that makes clear that the child is only as he was yesterday drives the despair deeper, and there are besides the difficulties of care for such a child, the endless round of duties that seem to bear no fruit, tending a body that will be no more than a body however long it lives, gazing into the dull eyes that respond with no lively look, helping the fumbling hands—all these drive deeper the despair. And added to the despair is the terror and the question, “Who will do this in case I do not live?”
And yet I know that the parents of whom I read do wrong when they take to themselves a right which is not theirs and end the physical lives of th
eir children. In love they may do it, and yet it is wrong. There is a sacred quality of life which none of us can fathom. All peoples feel it, for in all societies it is considered a sin for one human being to kill another for a reason of his own. Society decrees death for certain crimes, but the innocent may not be killed, and there is none more innocent than these children who never grow up. Murder remains murder. Were the right to kill a child put into a parent’s hands, the effect would be evil indeed in our world. Were the right to kill any innocent person assumed by society, the effect would be monstrous. For first it might be only the helpless children who were killed, but then it might seem right to kill the helpless old; and then the conscience would become so dulled that prejudice would give the right to kill, and persons of a certain color or creed might be destroyed. The only safety is to reject completely the possibility of death as a means of ending any innocent life, however useless. The damage is not to the one who is killed, but to the one who kills. Euthanasia is a long, smooth-sounding word, and it conceals its danger as long smooth words do, but the danger is there, nevertheless.
It would be evasion, however, if I pretended that it was easy to accept the inevitable. For the sake of others who are walking that stony road, I will say that my inner rebellion lasted for many years. My common sense, my convictions of duty, all told me that I must not let the disaster spoil my own life or those of relatives and friends. But common sense and duty cannot always prevail when the heart is broken. My compromise was to learn to act on the surface as much like my usual self as possible, to talk, to laugh, to seem to take an interest in what went on. Underneath the rebellion burned, and tears flowed the moment I was alone. This surface acting kept me, of course, from having any real contact with other people. Doubtless they felt the surface bright and shallow, and were perhaps repelled by something hard and cold beneath which they could not reach. Yet it was necessary to maintain the surface, for it was my own protection, too. It was not possible to share with anyone in those years my inner state.
The Child Who Never Grew (nonfiction) Page 5