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.