ARTICLES

Our Charlotte

LIFE WITH HER IS NOT A SACRIFICE

July 20, 1997, eleven p.m., a warm summer evening. I went into labor with my fourth child. I woke my husband, Stephane, and told him that I was going to drive myself to the hospital, that he needed to stay home with our three other children. I checked on Justine, age 10, Allie, eight years old, and Stephane, Jr., age three. They were all asleep. As I drove to Coronado Hospital, I was so excited about the birth of our baby. My last two pregnancies ended in fetal demise of twins, due to twin-twin transfusion syndrome, and a miscarriage previous to that. This pregnancy seemed to be fine. My doctor offered pre-natal testing, but I chose not to have these tests. I would take whatever I got.

I was admitted to the hospital and waddled up to labor and delivery. At seven the next morning, I called my husband to hurry over to the hospital. My regular doctor was out of town, so the on-call doctor came whirling into the room at 8:00 a.m. I knew his name was Dr. Moran, but I don't think Dr. Moran knew my name. He called me ma'am. I was delivering my baby without the benefit of anethestic. I think my husband told me to "watch my language." I shot back, "would you like to try and have this baby?" In the midst of my yelling, Dr. Moran noticed Stephane, Jr. sitting in the corner and asked, "shouldn't that little boy be out of the room during delivery?" At 8:36 a.m. our baby girl was born.

We named her Charlotte Marie-Claire Isabelle Voitzwinkler. The nurse took Charlotte to clean her and do a newborn assessment. A few minutes later, the pediatrician joined them in the examining room. He came back to the delivery room and told me matter-of-factly, "I don't think your daughter has Down syndrome." I asked, "why are you telling me this?" I did not get a response; he was hurrying out the door to another patient. (Some months later I happened to see the delivery nurse at my daughter's school, and she told me, "I'm so sorry about what happened to you the day your daughter was born. I suspected Charlotte had Down syndrome, but the doctor did not agree with me. Probably the doctor thought someone had told you that your daughter has Down syndrome.")

The next morning, my regular obstetrician came to see me, "What do you think about Charlotte? Do you think she has Down syndrome?" I asked her. She said, "I'm sure your daughter is fine; her doctor is very smart, and he knows what he is talking about." Charlotte was not nursing, and she seemed sort of floppy to me. I asked every nurse that I saw if they thought Charlotte had Down syndrome. Their response was to look away and change the subject. I walked to the nurses' station and asked if I could borrow a couple of their medical books to read about Down syndrome.

The medical books described the physical characteristics associated with Down syndrome. A flattened area on the back of the head. Eyes that slant upward and include an extra fold of skin at the inner corners, ears that are low on the head and small. Short fingers and broad hands, usually with a simian crease across the palm. Low muscle tone, mottled skin, an extra flap of skin on the back of the neck. I could not recognize all the signs of Down syndrome on baby Charlotte; however when I turned her over, there was something strange about the back of her neck. The skin seemed to fold over in two places, just as the book decribed.

I needed to speak to Charlotte's doctor, but I was going to be discharged in a couple of hours, so I would call him the next day. I was thinking about whom I could call for moral support. My parents have been dead for some time. I was not ready to speak to my husband about this problem. I called my sister, Susan. In between my sobs, I told her about what the doctor said and what I read in the books. I asked her if she thought I could raise a disabled child. Susan started to cry, "Of course, you can raise this child, we will all help you and Stephane."

My doctor discharged me from the hospital about four in the afternoon. I was thinking of what Charlotte would not be doing. I would not see her running on the sand with the sunlight on her hair, or walking down the aisle as a beautiful bride. I thought she would be like those poor disabled people I have seen walking down the street.

My husband and children came to pick me and Charlotte up from the hospital. My eyes were swollen and red from crying. Justine, Allie, Stephane, Jr. and my husband knew something was wrong. As I was leaving the hospital, one of the nurses slipped me a piece of paper with the phone number of the Down Syndrome Association of San Diego.

At home my husband called the pediatrician and requested a blood test to see if Charlotte had Down syndrome. The doctor agreed to the test and we took Charlotte to have her blood drawn. We had to wait three days to get back the preliminary results of the blood test, and during this time my sister came down from Santa Monica. We had to find a breast pump, so I could give Charlotte breast milk in a bottle. Mary Birch Hospital loaned me an industrial pump, which did the job very quickly. Mary Birch told me to keep the pump as long as I needed it. I went to Wellstart International in Hillcrest to learn about nursing a disabled baby. I thought in time Charlotte could learn to nurse.

My emotional health was no better than whan I left the hospital. I had decided that I wanted to give Charlotte up for adoption, rationalizing that another woman would make a better mother for Charlotte. I could not look at Charlotte without crying. A little floppy baby, who barely cried, in fact, I think she would be happy to starve to death. It was up to me to remember to feed her at the proper intervals. I was worried if I could handle the health problems that might arise. Some of the medical concerns attributed to Down syndrome include heart and gastrointestinal problems, increased chance of luekemia, vision, hearing and dental problems. I called the Down Syndrome Association and spoke to the new parent contact. I told her my plans for wanting to find an adoptive family for Charlotte. She told me to take some time and think about it. I told Stephane my plans to find Charlotte another home. He said, "She is my daughter and I love her and she needs me and I will be there for her." "Okay," I thought "I better pull myself together for my family."

Charlotte's doctor called Stephane and me to come into his office for the results of the blood test. Yes, Charlotte did have Down syndrome, also called trisomy 21, meaning that on the 21st chromsome, instead of having a duplicate pair from each parent, the 21st chromosome is triplicated. He invited us, "go ahead and cry, get it all out." I told him I did not want to cry. I was sick of crying, and I had one emotion that seemed stronger than my sadness. It was anger. I was mad at the doctor because I thought he spoke flippantly about Charlotte's condition, and he discharged a baby from the hospital that was not nursing. We said thank you and good-bye to the doctor. When we got home, Stephane and I broke down and wept.

I was worried about Stephane, because he had work for another week before his vacation started. His boss asked him if he would rather take this week off and go home. Stephane said, no, he would stay and work. I walked into the kitchen to find him sobbing inconsolably into a kitchen towel. He phoned his mother and father in France, and they were very sad they were so far away from their son. I was worried that Stephane would blame me for Charlotte having Down syndrome, and our marriage would be in jeopardy. I could not imagine us breaking up over our daughter, because we were already so heartbroken.

Our other children seemed to be doing well. My oldest daughter, Justine, asked me two questions. She said, "Mom, have you ever met a person with Down syndrome that you did not like?" "Well, um, come to think of it, no," I answered. "Do you not like Charlotte just be-cause she has Down syndrome?" I answered, "of course not." But that was the reason I could not love Charlotte. My other daughter, Allie, had been a peer tutor in the special classroom even before Charlotte was born. She told me how much fun she had in the special class. My little son, Stephane Jr., simply loved his sister from the moment she was born. He did not know what it meant to have Down syndrome.

Coronado is a small town, and many mothers and fathers know one another from the park or library or the schools. Stephane and I enjoy walking uptown and stopping at the park to let our son play, but since Charlotte's birth, we were acting strange. We were walking but did not want to talk about the baby. We didn't want people to look at Charlotte. As we walked down Orange Avenue my friend Francine asked about Charlotte and wanted to peek at her in the stroller. I blurted out, "she has Down syndrome." Francine's reaction stunned me, "Oh, that is great, my sister has Down syndrome, she's doing wonderfully." A stranger saw Charlotte in her stroller and told me, "she will be the icing on your cake." I knew another woman that had one child with Down syndrome and wanted to adopt another child with Down syndrome. I thought all of these people were crazy.

I joined the Down Syndrome Association of San Diego and spoke to parents that have gone through the same experience. I learned that life does go on and it can be enjoyable. Food will taste good again, your sense of humor will return, but best of all, you start to love your child. I read books written by parents of disabled children. The first book was Another Season by Gene Stallings. This well-known college football coach had a son that would never be a great football player. Coach Stallings wrote that late at night he would sit and rock his son to sleep and slowly fell in love with his son. That is exactly what was happening to me as I held Charlotte. Pearl Buck's The Child That Never Grew is about her mentally retarded daughter. Pearl Buck decided it would be best for her daughter, if she were put into a home for the retarded. She wanted to make sure her daughter would be taken care of in the event of her death. Dale Evans and Roy Rogers wrote a book about their daughter titled Angel Unaware told from the child's perspective. A Special kind Of Hero was the life story of Chris Burke, who acted in the television series, Life Goes On. I was surprised by this book, because Chris Burke pushed his parents to let him become an actor; it was not the other way around. The columnist George Will has a son with Down syndrome and writes about the things his son taught him.

I am a Roman Catholic. I went to Catholic school for twelve years. I go to church almost every Sunday and love my religion and God; after Charlotte was born, I could not pray. I did not know what to pray for. I thought it would be ridiculous for me to pray for Charlotte to be "fixed." I called a priest, told him about my daughter, and asked him for some insight. He told me that children with Down syndrome have pure souls. This simplicity intrigued me. I thought about those people that told me I was given a gift from God. Maybe that was the gift, to live with a child that was about as close to an angel you can get.

I once went to church and wanted to sit quietly with my daughter and feel peace, but the lady sitting next to me was curious why my baby was drinking out of a bottle, and why wasn't I breast-feeding. I prayed to God and the Blessed Mother to bless me with grace to handle anything that might happen to Charlotte. My mother-in-law in France sent me some water from the Lourdes Grotto. I said the rosary many times and had Charlotte drink some of the water, and I put it on her legs, because at eighteen months, she is not yet walking. After I put the Lourdes water on Charlotte, I sat and stared at her as if I would witness a miracle immediately. She did not get up and walk at that moment, but I was reminded by my sister that miracles do not always happen as expected. I wish the Catholic community worldwide would reach out and help mothers and fathers that are faced with a disabled baby, because there is so much pressure to terminate these children. Prenatal tetsing can virtually wipe out a whole population of babies with Down syndrome. I pray that God takes care of my family and especially Charlotte.

Charlotte is eighteen months old. She has the most beautiful green eyes, red hair, and an adorable smile. She crawls and gets into everything at the crawling level. She loves music and playing with her sisters and brother. When she was a few months old, we went to the annual Down Syndrome Association Buddy Walk held at Balboa Park. I cried so hard when I got home; I felt so bad for most of the people with Down syndrome, and it scared me that our babies' lives would be so sad. I told my husband that I would never, never go to another one of these functions. I did go to another one of these functions. Point Loma Nazarene College holds an annual Easter egg hunt for the children of the Down Syndrome Association. I thought my kids would have a good time, so we went over to Point Loma. The day was like a dream. Stormy, beautiful blue ocean. and the white water hitting the rocks along the shore. I did not see anything sad or scary that day; it was just kids looking for Easter eggs and enjoying the day. It was a revelation for me. I came so far in my acceptance of Down syndrome functions, that I put together the Holiday Party this year. Now I am the secretary for the Down Syndrome Association, and I go to schools and speak about what it means to live with and love someone who has Down syndrome.

On August 9, 1998, a young man with Down syndrome, Christian Pueschel, passed away at the age of 38. He was attending the National Down Syndrome Congress Convention with his father, Dr. Siegfried Pueschel. I have permission from Dr. Pueschel to reprint his eulogy for his son:

"Chris was a brilliant teacher. He taught me that individuals with Down syndrome are persons in their own right in spite of their limited capacity for academic achievement. He taught me that an IQ score is a demeaning measure of human potential and human qualities. Furthermore, he taught me that persons with mental retardation have an intrinsic value of humanity and that they can contribute to society and perform tasks which previously never were expected of them. Chris let me know that using quality as a measure of relationship brings a dimension that quantity just cannot match. Chris taught me tolerance and patience, and he taught me many more things that I never learned in medical school. He also taught me that beyond intelligence and material accomplishments we so highly value in our culture, that there are more important human qualities we can strive for. He taught me that service to others must rank higher than personal gratification and private enterprise. Chris so well exemplified that there is a goodness, humanity, and magic in our children with Down syndrome that must be protected and never be betrayed. I am so grateful to Chris because he has given me more than a father ever could have asked for. I am so proud of my Chris."

Dr. Pueschel finished his eulogy with this paragraph: "When Chris passed away, I was holding him in my arms and could not stop hugging him-- and there was an endless stream of tears-- and now his mother is holding him closely and she always will hold him in her arms. And then I had to say 'Good-bye my Chris, Farewell my son. We always will love you, and you always will be in our hearts.'"

The time I have spent with Charlotte has shown me that life with her is not a sacrifice, but a joy. I feel privileged to be in her world. She is so wonderful to watch, she makes us laugh at the funny things she does, and I doubt if a baby has ever been kissed more than Charlotte. Watching her sleep at night, I think about those people who said I was blessed to have Charlotte. Now I know they were right.