"Walking Behind Cherie" page 6

Well, all the hoopla is over and now I am beginning the process of having Cherie's health determined. The first place to start was her heart. I made an appointment with the head cardiologist at Children's Hospital. These professionals working with children are such wonderful people. Even in the face of critical issues they have so much compassion. The first thing to do was a heart catheterizing. Yes, it was a test, but done under anesthetic as a line is inserted in the thigh bringing die through the chambers of the heart. Many children with DS have holes in their heart. This is due to the fact that they are usually not completely formed in the womb. The news was not good. Cherie had a hole in the upper AND lower chambers of her heart. The devastation of this was no surgery could ever be done as she would die on the table. The first 2 years are the most critical and if she gets to 2 we will have passed the first major hurdle towards a longer life.

The next project on the agenda was physical therapy. The way I approached this with her therapists was to have them teach me how to teach her. With most insurance policies therapy is limited to 2 months. I made the absolute most of this time and learned so much. Parents don't realize that rolling over, crawling, sitting up and eventually walking are not always achievements a child makes on their own. Cherie had to be taught all those early natural markers we look for as our babies get older.

I was very excited about this; however, it would be 2 years before such activities could begin. For the first 2 years, Cherie was in the hospital 6 times with pneumonia and other upper respiratory infections. At 1 year she weighed 9lbs., and at 2 years she weighed 14lbs. We had an infant for 2 years. There was a constant underlying fear that we would not have her for long and every trip to the hospital seemed to keep that thought in the forefront of our minds. Every trip to the hospital was frightening.

One interesting experience I had on her last bout with pneumonia was coming out of her hospital room and running into a friend who was more like a brother. I called him over and said: "Cherie is here, come in and meet her". I learned later that he was very nervous about how he would react. During this last stay in the hospital she gained "3" pounds and it was apparent she was on her way to a road to better health. When my friend met her he was shocked. She giggled and showed great happiness to see him. As he left the room he looked at me and said: "I am so very sorry that I did not come to visit you when she was born. I had no idea how cute and personable she would be. I just was not aware what Down Syndrome was!! "

"Walking behind Cherie" page 5

FINALLY we are home from the hospital. The haven of our home felt so very good and comforting. However, the reality of how life would be was about to show it's face. When one of your friends or family members has a baby, what do you do? Naturally, you pay the new parents a visit and coo over there ever so cute new life. Well, that was not the case for us. At the time I had Cherie, people confused Down Syndrome with Hydrocephalus which is the enlarged head due to fluid build up on the brain. Most people thought that was what Cherie had so they stayed away. There were a few, but very few. The loneliness that began to settle in on me was like nothing I had ever experienced. I had my beautiful baby and lavished her with all my love and attention. Beyond that I felt like we had leprosy. We had very few phone calls or visitors. I still did not have a grasp on the nature of her condition so I just enjoyed her until I was well enough to go to the library.
Less than a week after Cherie was born I hemorrhaged and had to have an overnight stay at the hospital for a D&C. I was very distraught about being away from Cherie. There was still the fear that she only had a few short months to live. And on top of it all I had to miss her first doctors appointment which we made immediately upon arriving home. Our pediatrician had been my pediatrician when I was young and I had great faith in him. I was extremely anxious to know the prognosis. The doctor was very calm and almost nonchalant about her diagnosis. He looked at my husband and said "Treat her like a normal child and she will act like one". He recommended we see a cardiologist at Children's Hospital and not to worry so much. That was a little confusing; however, he has many DS patients that were progressing well and he know it was not the disaster we thought it was.
Christmas was almost upon us and we were getting ready to have her baptised. She was my Christmas gift!!! Little did we know that in just a few short weeks after the holidays we were going to face our first serious illness that put her in the hospital..........

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Tuesday……..another lonely day. The nurses no longer stopped by to say hi or visit for a bit. I was left with jumbled thoughts and trying to make sense of the last few days. I was overjoyed when Cherie took well to breastfeeding. Many DS babies do not have strong sucking instincts and cannot breastfeed. I was overjoyed that she received her nutrition from me. It also was such a special bonding time between she and I.
The reason to stay an extra day was to have her blood drawn for the chromosome test. In some cases DS is hereditary and in most cases it is a chromosome malfunction. My mother worked in the pathology department of a local hospital and I had also worked there when I was in high school. I knew the cytologist and his assistant. So we were able to have them come to the hospital, draw her blood and take it back to the hospital where my mom still worked. That gave us great peace of mind. We knew that they would take time with us when the results arrived. During the time that I worked at the hospital I met Bill. He was 10 years older than I and became a very close friend and mentor. To this day we keep in touch! He came to the hospital to draw the blood. It was so exciting to actually talk to a friend about the recent events. He was so very supportive and spent some quality time with me. The nurse had given me a very strong sleeping pill and I still laugh when I think that I fell asleep while I was talking to Bill. “Sleep” a wonderful escape from the present reality.
Wednesday……a day of extreme joy to be able to take our sweet little Cherie home mixed with doubts and fear of the unknown. I was only 20 years old. In my favor I was the oldest of 4 children so I did have some experience with babies. However, I had no idea what obstacles may be ahead of us. Such a time of uncertainty. I knew that I had a lot to learn and as soon as I got home the intense research began. We did not have the internet. The library was our internet LOL.
As soon as we got home we made the call to our pediatrician. He had been my pediatrician when I was young so there was a lot of trust. I knew that he would be able to lead us in the right direction on our path of discovery. And so began our journey…………………..

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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..........

"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...................................................

"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

Walking behind Cherie

Hello,
I live in Clinton Township and I just began blogging on the site set up by the corporation of the apartment complex I live in : http://paragonlifeblog.com/2010/01/08/hello-from-a-new-friend/
This was my first blog and I also want to post it on: http://downsyndromelife.blogspot.com/

Each week I will be doing a excerpt of the book I plan to publish about my Down Syndrome daughter Cherie 12/01/72 - 09/20/80. Her life was more than being one of my children. Her life was for everyone who met her to share. And as her mother, I felt that I was an observer of a life beyond definition. She changed my life forever and everyone who crossed her path. I hope that you will find my blogs interesting!!
Karol