The Child Who Never Grew

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 their 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.

I can speak with detachment of it now, for it is over. I have learned my lesson. But it is interesting to me and may be of some small importance to some, merely as a process, to speak of learning how to live with sorrow that cannot be removed. Let me speak of it so, then.

The first phase of this process was disastrous and disorganizing. As I said, there was no more joy left in anything. All human relationships became meaningless. Everything became meaningless. I took no more pleasure in the things I had enjoyed before; landscapes, flowers, music were empty. Indeed, I could not bear to hear music at all. It was years before I could listen to music. Even after the learning process had gone very far, and my spirit had become nearly reconciled through understanding, I could not hear music. I did my work during this time: I saw that my house was neat and clean, I cut flowers for the vases, I planned the gardens and tended my roses, and arranged for meals to be properly served. We had guests and I did my duty in the community. But none of it meant anything. My hands performed their routine. The hours when I really lived were when I was alone with my child. When I was safely alone I could let sorrow have its way, and in utter rebellion against fate my spirit spent its energy. Yet I tried to conceal my weeping from my child because she stared at me and laughed. It was this uncomprehending laughter which always and finally crushed my heart.

I do not know when the turn came, nor why. It came somehow out of myself. People were kind enough, but no help came from anyone. Perhaps that was my own fault. Perhaps I made my surface too smooth and natural so that no one could see beneath it. Partly that, perhaps, and partly it was, too, because people shrink from penetrating surfaces. Only those who know inescapable sorrow know what I mean.

It was in those days that I learned to distinguish between the two kinds of people in the world: those who have known inescapable sorrow and those who have not. For there are basically two kinds of sorrows: those which can be assuaged and those which cannot be. The death of parents is sad, for they cannot be replaced, but it is not inescapable sorrow. It is natural sorrow, that which one must expect in the normal course of life. The crippling of one’s body, irremediably, is an inescapable sorrow. It has to be lived with; and more than that, it has to be used for some other sort of life than that planned in health. The sorrows which can be assuaged are those which life can cover and heal. Those which cannot be assuaged are those which change life itself and in a way themselves make life. Sorrows that can die can be assuaged, but living sorrow is never assuaged. It is a stone thrown into the stream, as Browning put it, and the water must divide itself and accommodate itself, for it cannot remove the stone.

I learned at last, merely by watching faces and by listening to voices, to know when I had found someone who knew what it was to live with sorrow that could not be ended. It was surprising and sad to discover how many such persons there were and to find how often the quality I discerned came from just such a sorrow as my own. It did not comfort me, for I could not rejoice in the knowledge that others had the same burden that I had, but it made me realize that others had learned how to live with it, and so could I. I suppose that was the beginning of the turn. For the despair into which I had sunk when I realized that nothing could be done for the child and that she would live on and on had become a morass into which I could easily have sunk into uselessness. Despair so profound and absorbing poisons the whole system and destroys thought and energy.

My own natural health, too, I suppose, had something to do with it. I saw that the sun rose and set, that the seasons came and went, that my garden bloomed and that upon the streets the people passed and laughter could be heard.

At any rate, the process of accommodation began. The first step was acceptance of what was. Perhaps it was consciously taken in a day. Perhaps there was a single moment in which I actually said to myself. “This thing is unchangeable, it will not leave me, no one can help me, I must accept it.” But practically the step had to be taken many times. I slipped into the morass over and over again. The sight of a neighbor’s normal little daughter talking and doing the things my child could never do was enough to send me down. But I learned not to stay down. I came up again and learned to say, “This is my life and I have to live it.”

Having to live a life, it seemed rational as time went on to try to enjoy what I could in that life. Music was still too close to me, but there were other things I could enjoy — books, I remember, were first. Flowers, I think, came next. I began to care, mildly, about my roses. It all began, I remember, in a sort of wonder that such doings went on as they had before, and then a realization that what had happened to me had changed nothing except myself.

Yet life did not really begin again until necessity drove me to think what I ought to do about the child’s life. There were certain practical things that could and should be done. Was I to keep her with me, or should she find a home among children of her own kind? Would she be happier with me or with them? Had there been security in her life with me, I would have felt it best to keep her with me, for I did not believe that anyone could understand her as well as I did, or do for her what I could. Moreover, I had given her birth and she was my responsibility.

It was then that the solitary place in which she stood became apparent to me. The world is not shaped for the helpless. If I should die too young, what would become of her? We were living in China. The best that could be expected was that she would be taken to our country, the United States, and put into an institution. There, alone, she would have to make the adjustment of being without me and without her loving Chinese nurse and all that had meant home to her. She might not be able to make such an adjustment alone. Certainly she would not be able to understand why it had to be, and the puzzle and grief might disturb her beyond control. It came to me then that it would be best for her to make the adjustment while I lived, while I could help. She could gradually change her roots from this home in a new one, knowing that I was near and would come to see her again and again.

Upon this matter of her future security alone I made my decision. It was hastened, perhaps, by a situation peculiar to my life: that China was upset by civil wars and revolutions. I think my decision took its final shape on a certain day, of which I have written elsewhere, when a horde of communist soldiers forced Americans and other foreigners out of their homes, killed some of them and compelled the rest of us to hide for our lives. A kindly Chinese gave us the shelter of her little thatched hut, and there through that long day I faced death with all my family. But it was of my child that I thought most. If the moment of death came, I must contrive to have her killed first. I could not leave her in the hands of wild soldiers.

This situation, as I say, was peculiar, and of no moment to those for whom I write this story. But the essential question remains the same for all of us who have these children who never grow up. We have to think beyond our own lives for them.

It became apparent, too, as time went on, that my little daughter should find her own companions. The friends who came and went in my home could never be her friends. Kind and pitying as they were, they felt the child a strain upon them and they in turn were a strain upon her and upon me. It became clear indeed that I must seek and find her world and put her in it.

Again an incident, very slight in itself, crystallized my thinking. We had some American neighbors in our big Chinese community, and one of the neighbors had a little girl just the age of mine. They had gone to each other’s parties. One day, however, the other little girl, having come over to play, was prattling as little girls will, and she said, “My mamma says don’t have your poor little girl any more to my party, and so I can’t ever have her next time.”

Next time, indeed, the invitation did not come. The great separation had begun. I realized then that I must find another world for my child, one where she would not be despised and rejected, one where she could find her own level and have friends and affection, understanding and appreciation. I decided that day to find the right institution for her.

I might mention another circumstance peculiar to my situation. When I told one or two of my closest Chinese friends what I had decided upon, they were very much perturbed. Chinese do not believe in institutions. They feel that the helpless, young and old, should be cared for by the family, reasoning, and quite truly, that no stranger, however kind, can be trusted to be as kind as the family. There are no homes for the old in China, no orphanages except those started through western influence, no places for the insane or for the mentally defective. Such persons are cared for entirely at home, as long as they live. My Chinese friends therefore thought me very cruel to consider letting my child leave home. In vain I explained to them that the American family was not like theirs. The Chinese home is stable and it continues in the same house from generation to generation. All generations live under the same roof and are mutually responsible for and to one another. It is true that such a family home is ideal for the care of the helpless.

They could not believe that I had no such home even in my native land. My relatives were strange to me, since I had grown up far from them, and certainly they could not be expected to look after my helpless child were I to die. Moreover, they lived in separate homes of their own. They would consider it an imposition to have my child left in their care. Ours is an individualistic society, indeed, and the state must do for the individual what family does in the older civilizations. It was hard to explain this to my Chinese friends, and hard not be moved by their appeals to me to keep the child with me.

The decision made, the next question was how it was to be done, and then when. I had found out enough to know that the sort of place I wanted my child to live in would cost money that I did not have. There was no one to pay for this except myself. I must myself devise means to do what I wanted to do for my child.

I am speaking now entirely about myself, and I realize that what I did cannot always be done. The fact is I had never considered money from the days when I first began to earn my own living, at least in part, when I was seventeen years old and in college. Independence had taught me that the important thing was to know what I wanted. Then I could always find means to get it. This habit of mine held. I decided that when the time came I would return to my country and search for the place which could become my child’s home.

There is infinite relief in a decision. It provides a goal. A guiding rope was flung into the morass and I clung to it and dragged myself out of despair day by day, as the goal became more clear to me. Knowing what I was going to do and thinking how to do it did not heal the inescapable sorrow, but it helped me to live with it. I ceased to use all my spiritual energies in rebellion. I did not ask why so continually. The real secret of it was that I began to stop thinking of myself and my sorrow and began to think only of my child. This meant that I was not struggling against life, but slowly and sometimes blindly coming into accord with it. So long as I centered in myself, life was unbearable. When I shifted that center even a little, I began to understand that sorrow could be borne, not easily but possibly.

I felt, however, that before I let my child leave me I ought to try her abilities for myself and learn to know her thoroughly, so that I could make the best possible choice of her future home. For this I decided to take a year, during which all my time, aside from family essentials, would be spent with her. I would try to teach her to read, to write, to distinguish colors and, since she loved music, to learn notes and to sing little songs. Whether she could do this I did not know. It was as important for me to know if she could not as to know if she could.

In a curious way I was helped here by what was taking place in China. The rowdy capture of Nanking by the new revolutionary forces had compelled all white people to leave the city for a period. It was in early spring that the capture took place, and we went to Japan for a peaceful summer in the beautiful green mountains above the seaport of Nagasaki. It was a happy summer in its way. We lived in a small Japanese house in the woods, and bereft of possessions and responsibilities, it was a return to nature. For me, after the hard years, it was a time of healing. I knew no one except the friendly Japanese fisherfolk who came to sell crabs and fish at early morning. My child could run about as she liked, while I did my primitive housekeeping. I cooked on a charcoal brazier as the Japanese women did, and we lived upon rice and fish and fruit.

I shall pause here for a little gift of thanks to the Japanese people I met in those pleasant months of enforced holiday. Later in the summer I decided to take advantage of idleness and to make a journey through Japan. With my child I made that journey, traveling third class by day on the trains, both to save money and to meet the average Japanese people. We ate the little lunches we bought from vendors at the station, small clean wooden boxes packed with compartments of rice, pickles and fish, and my child for the first time in her life had fresh pasteurized milk, hot and in sealed bottles.

At night we left the train and slept in clean little village inns where we saw only Japanese faces. We left our shoes at the doorway, and deft Japanese maids put slippers on our feet and led us to a hot bath and then to our room. Then the evening meal was served in lacquered wooden bowls, a chicken or beef broth, eggs, fish, rice and tea. Afterward the spotless soft quilts were brought from the wall closets, and spread on the clean matting floor for us. I woke often in the night to gaze into a dim moonlit garden, perhaps only a few feet square, which somehow suggested, nevertheless, space and infinity. It is the Japanese genius. Everywhere we met with kindness and courtesy. There was no sign that anyone saw my child as strange. She was accepted for what she was and most tenderly treated. That brought healing too.

In the late autumn, before Christmas, we went back to China to live for a year in Shanghai. It was still not safe, we were told, to return to Nanking. That year alone with my child was a profound education for me. As I look back on it, I see that it was the beginning of whatever real knowledge I have of the human mind. We had three rooms at the top of a house shared with two other families, refugees like ourselves. There I planned my child’s days and my own, so much time each day devoted to finding out what she could learn. I willed myself to patience and submission to her capacities. Impatience was a sin. So the long year began, work interspersed with exercise and play.

The detail of those months is unimportant now, but I will simply say that I found that the child could learn to read simple sentences, that she was able, with much effort, to write her name, and that she loved songs and was able to sing simple ones. What she was able to achieve was of no significance in itself. I think she might have been able to proceed further, but one day, when, pressing her always very gently but still steadily and perhaps in my anxiety rather relentlessly, I happened to take her little right hand to guide it in writing a word. It was wet with perspiration. I took both her hands and opened them and saw they were wet. I realized then that the child was under intense strain, that she was trying her very best for my sake, submitting to something she did not in the least understand, with an angelic wish to please me. She was not really learning anything.

It seemed my heart broke all over again. When I could control myself I got up and put away the books forever. Of what use was it to push this mind beyond where it could function? She might after much effort be able to read a little, but she could never enjoy books. She might learn to write her name, but she would never find in writing a means of communication. Music she could hear with joy, but she could not make it. Yet the child was human. She had a right to happiness, and her happiness was to be able to live where she could function.

“Let’s go outside and play with the kittens,” I said.

Her little face took on a look of incredulous joy, and that was my reward.

Happiness, I now determined, was to be her atmosphere. I gave up all ambition for her, all pride, and accepted her exactly as she was, expecting nothing, grateful if some flash came through the dimness of her mind. Wherever she could be most happy would be her home. I kept her with me until she was nine years old, and then I set out in search of her final home.