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.