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I refer to this essay in the first chapters of Remembering Alexis.
I wrote it when she was three years old.
It marks the beginning of our my unconditional love for her.
The American Dream
Thanksgiving, 1978
America is an amazing place. It protects; it provides; it guides and it teaches. The green light in The Great Gatsby is for me the symbol of the teaching that America gives. Go ahead. Anything is possible. If you work hard enough and if you are a good person, you can have what you want. This is America; you are free; you are an intelligent, potentially productive individual. Go. There are no limits. Search. Achieve. Then you will be happy.
I come from a happy, healthy middle class family in which this philosophy was an unspoken part of our daily bread. My father knew that his children were bright and talented; he knew that they could and would, under his direction, achieve at least moderate success. My mother loved us deeply and always felt that because we were so loved and so bright, that we would be able to obtain whatever we might want. Consequently, we four grew up with confidence that if we wanted badly enough, the American Dream would be true for us too. No one expected Alexis.
Alexis is my first child. She is three and a half years old, the eleventh maternal grandchild. She is, as objectively as I can see her, the most beautiful and gentle child I have ever known. Her huge brown eyes are soft and knowing, always trusting and asking for understanding and help. Her brown hair rests gently about her face. Alexis is blessed with a depth of love from her parents that most children will never have. I have never loved so deeply and so intensely that even the thought of that love brings tears. Alexis is a very special child. Alexis is retarded.
The birth of Alexis changed my life. We were happy parents. No. We were ecstatic parents. We loved so deeply that we wanted to share our love with a child. Alexis was apparently normal at birth. At eight weeks she began to have seizures. The doctors could not tell us why, "She will outgrow them; she will be fine." By five months the seizures not only continued but grew worse, and we were told my a pediatric neurologist, "Alexis will never be normal." Thus began my fight for the American Dream.
For months and months I mentally and spiritually fought for and worked for Alexis. I was sure that if I worked hard enough, I would get what I wanted. Hours of physical therapy, both at home and at the hospital. Hours of cuddling and talking. Hours of developmental exercises. Hours of doctors' appointments and tests. Hours of praying. Hours of tears. Days of gray. "If you reach up far enough, God will reach the rest of the way, " I was told. I knew he would; I knew he had to; I wanted Alexis to be my normal little girl.
My dream culminated in Boston in 1976 with a visit to the world's authority on seizures in infants. This would be Alexis' third hospitalization; surely the doctors whom I had always deified would be able to help Alexis or at least be able to tell me why she was handicapped. Alexis and I spent a week in a children's neurological ward. I saw things that, although I presumed they existed, I had never seen and hope to never see again. A nine-month old with a brain tumor; a hydrocephalic who died when I took a nap; a two-and-a-half- year-old boy, once normal, seizing constantly and almost a vegetable. I watched other parents who believed in the American Dream; we talked; none of us could believe that such tragedy could happen to us. Our hearts were tormented; mine began to give way.
Yet the doctor was optimistic. He said that Alexis would never attend college but that there was every hope that she might still be an "almost normal" child. Doctors do not like to give neurological prognoses, especially pessimistic ones. "There is a lot of hope for her. The brain can do wonders, and we can find nothing wrong with hers." I began to renew my Dream.
And thus I continued to believe. I spent another year as I had spent the previous months. I worked; I prayed; I believed. But nothing happened. Alexis continued to look at me with her pleading eyes, but she did not get appreciably better. I began to forget the "not go to college" prognosis. I began to lose sight of the Dream. No matter how I tried and cried, the wall would not move. I lowered my expectations. I would have been content to see a lovely two-year-old girl sit up, smile, or say "Hi." She couldn't. She doesn't.
I have lost the dream. Philosophically I always knew, now I realistically know, that no one, not even an American, can have anything he wants. Sometimes God puts up brick walls that we cannot get through; I have many bruises from trying. I kept reaching up but God never met me. It has taken me a long time to understand that I was reaching the wrong way.
The dream is just that. A dream, made by people, for people. I have lost the dream, but I have not stopped trying; I have not given up. Alexis continues to live with us, and I still work with her and with the doctors; but now I know that if a dream is to come true, if a miracle is to happen, that it is not going to be because of me. I do not feel lost without the dream; I feel better. What an awful burden it is to feel like God. No. Now Alexis is in God's hands, where she belongs and where she has always been. What he decides to do with her, I cannot change. I have tried, and I have learned that I am no more than a humble human, no matter how hard I try and want. I am happy to have accepted my limits.
I have also accepted Alexis' limits. I cannot talk with her about the butterflies, share a snowball fight, or watch her develop friendships and learn and grow as I had dreamed. But I can love her and in loving know that my dreams must not be and cannot be her dreams; that she is happy, and that what she does not have, she does not want. She surely loves and she is truly loved for all that she is and for everything that she is not. And that is more valuable than all the dreams in the world.
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