It's early Monday morning. I'm still trying to absorb all the events of Sunday. Gazing at Cherie I just could not believe that there was anything wrong with her. Well, it didn't matter anymore. There were no decisions to make as far as I was concerned. It's 7:30 am and the pediatrician came back. Once again he brought even worse news than the day before - and I was alone. The Dr. told me that Cherie had a heart murmur and would probably live for about tw0 months. Once again I was reeling. How much more could I take?
There are many different forms of grieving and I was grieving. There are many deaths other than the death of a person. Divorced couples grieve the death of a relationship. Mothers grieve when all of a sudden the nest is empty and they face the loss of being with their children daily. I was grieving the loss of the future I had envisioned for Cherie. As the reality began to sink in the realization that her life would be very different became apparent. I pondered on the facts that she may not go to school, she would not have a first date, she would not go to the prom and she would not graduate from high school - all the events in our lives that marked certain accomplishments we remember the rest of our lives. And now I was facing the fact that I was actually going to lose her before she even had time to make her mark in this world.
It is in my nature to research everything I could to educate myself on whatever might be of interest to me, such as breastfeeding, natural childbirth, nutrition and canning food. So I began to read books. One book I read was "Angel Unaware" by Dale Evans. It was a poignant read; however, her Down Syndrome child died at 2 years of age, leaving me with added fear. Most of the other books I read had the theme from the 50's and these children were not talked about and many were institutionalized. It all seemed so bleak. The heaviness in my heart was so overwhelming I felt as though I could not breathe. With such an uncertain future, all I could do was hold her as tight as I could and know that I would love her as much as I could for every day she was with me. I loved her so much I did not care what her limitations would be..........
Saturday, February 13, 2010
Saturday, February 6, 2010
"Walking Behind Cherie" page 2
At the end of page one I left off midday on Sunday with the family in my room and trying to grasp the reality of the news about our 1st child, Cherie. The pediatrician had left long ago and not one of us knew the ramifications of what raising a Downs Syndrome child might be. Our first glimpse of help came when my OB-GYN came in to see me. By reviewing the chart he knew what we had been told. I remember that he sat at the side of my bed and said "treat her like a normal child". I'm sure that he had more comforting things to say but that one statement stayed with me for the duration of her life.
Soon visiting hours were over and the grandparents left. My husband Jon and I sat on the bed not knowing what to say. There was a heaviness that settled upon us and we just sat on the bed and talked about what her future might be. One thing we knew was that she was going to live with us!! The only way that would change was if she was so disruptive that our future children would not have the opportunity to live normal lives.
One very noticeable thing happened. The nurses who would stop in from time to time no longer came by. When one of the nurses' came in to take my blood pressure or take my temperature she would not look at me. Suddenly I became this obscure person the staff did not want to spend any more time with than was necessary. It was the beginning of the isolation I would feel many times in the future. That night I held my daughter in the darkness of the room nursing her and giving her all the love I had. I did not understand but it did not matter. She was mine and I would see to it that her life would be a good and happy life. In the darkness of the night I felt an overwhelming love for her and nothing else mattered. Together we slept.
The next step to face was a genetic test to make sure that we were not carriers of Downs Syndrome. Another frightening thought. Would all our children have this anomaly? Would I even be able to have more children if we were carriers. Such an uncertain future...................................................
Soon visiting hours were over and the grandparents left. My husband Jon and I sat on the bed not knowing what to say. There was a heaviness that settled upon us and we just sat on the bed and talked about what her future might be. One thing we knew was that she was going to live with us!! The only way that would change was if she was so disruptive that our future children would not have the opportunity to live normal lives.
One very noticeable thing happened. The nurses who would stop in from time to time no longer came by. When one of the nurses' came in to take my blood pressure or take my temperature she would not look at me. Suddenly I became this obscure person the staff did not want to spend any more time with than was necessary. It was the beginning of the isolation I would feel many times in the future. That night I held my daughter in the darkness of the room nursing her and giving her all the love I had. I did not understand but it did not matter. She was mine and I would see to it that her life would be a good and happy life. In the darkness of the night I felt an overwhelming love for her and nothing else mattered. Together we slept.
The next step to face was a genetic test to make sure that we were not carriers of Downs Syndrome. Another frightening thought. Would all our children have this anomaly? Would I even be able to have more children if we were carriers. Such an uncertain future...................................................
"Walking Behind Cherie" page 1
Hello to all and Happy New Year,
I have always wanted to tell my daughter’s story and this platform is so perfect. Each blog will be a continuing excerpt of her life. The reason this is titled “Walking behind Cherie” is because I felt as though I was an observer of this light in human form. Well, let’s start at the beginning…………………..
Saturday, December 1, 1972 at 2 pm I gave birth to a beautiful baby girl. We named her Cherie Renae. Like all parents we counted fingers and toes and just knew that she was perfect. I was only 20 years old but in that moment I grew up and became a mother. I was told that the pediatrician would be in later to talk to me after he checked her. I waited and he never came. The nurse told me I was in the shower when he came by. Oh well, I wasn’t expecting anything but a littany of how perfect she was. I was breastfeeding so she stayed in my room around the clock. All I could do was stare at her. Sunday, December 2 at 7 am the pediatrician enters my room. He sat down in a chair and said my baby was Mongoloid (the term used back then for Down Syndrome), and I had absolutely no idea what he was talking about. He proceeded to tell me I should institutionalize her as soon as possible but I would be on a waiting list. He said she would be a vegetable. AND he began to cry. The room was spinning and I could not absorb this news. He told me this when I was alone instead of telling me to call my husband and talk to us together. The Dr. is talking and I am dialing the phone. I could no longer hear what he was saying. All I knew was that this was too much for me to take in by myself. My husband answered the phone and could hardly understand me. He heard the words “something is wrong with the baby” and he told me he would be in the car and on the way immediately. His father was right behind him. I called my mother and soon both sets of grandparents were in my room and the Dr. was gone. Through choking tears I tried to repeat what he said. I didn’t understand what he said so I was not very clear about what was wrong. All I knew was that she was mine and she was living with me. I could not see anything wrong with her. It was all so surreal. Until next time………………………..Karol
I have always wanted to tell my daughter’s story and this platform is so perfect. Each blog will be a continuing excerpt of her life. The reason this is titled “Walking behind Cherie” is because I felt as though I was an observer of this light in human form. Well, let’s start at the beginning…………………..
Saturday, December 1, 1972 at 2 pm I gave birth to a beautiful baby girl. We named her Cherie Renae. Like all parents we counted fingers and toes and just knew that she was perfect. I was only 20 years old but in that moment I grew up and became a mother. I was told that the pediatrician would be in later to talk to me after he checked her. I waited and he never came. The nurse told me I was in the shower when he came by. Oh well, I wasn’t expecting anything but a littany of how perfect she was. I was breastfeeding so she stayed in my room around the clock. All I could do was stare at her. Sunday, December 2 at 7 am the pediatrician enters my room. He sat down in a chair and said my baby was Mongoloid (the term used back then for Down Syndrome), and I had absolutely no idea what he was talking about. He proceeded to tell me I should institutionalize her as soon as possible but I would be on a waiting list. He said she would be a vegetable. AND he began to cry. The room was spinning and I could not absorb this news. He told me this when I was alone instead of telling me to call my husband and talk to us together. The Dr. is talking and I am dialing the phone. I could no longer hear what he was saying. All I knew was that this was too much for me to take in by myself. My husband answered the phone and could hardly understand me. He heard the words “something is wrong with the baby” and he told me he would be in the car and on the way immediately. His father was right behind him. I called my mother and soon both sets of grandparents were in my room and the Dr. was gone. Through choking tears I tried to repeat what he said. I didn’t understand what he said so I was not very clear about what was wrong. All I knew was that she was mine and she was living with me. I could not see anything wrong with her. It was all so surreal. Until next time………………………..Karol
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