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Our Wonderful World with Charlotte

Dejection Turns to Joy for a Coronado Family

BY MARY ANN VOITZWINKLER

Sadness, despair, heartbreak and isolation, these emotions are not usually associated with the birth of a child, however these were the feelings that I experienced with the birth of my fourth child.

Everything seemed perfectly normal throughout my pregnancy and I was blissfully anticipating a healthy baby to love. Charlotte came into this world on July 20, 1997, and all of my happiness and joy came to a screeching halt. A series of events in the delivery room gave me much cause to worry that Charlotte may have had Down syndrome. I borrowed a medical book from one of the nurses and read the chapter on Down syndrome. A list of the physical characteristics of babies with Down syndrome was to be my guide as I "examined" Charlotte. I removed her pink blanket, tiny T-shirt and diaper. She looked so sweet and small, however I noticed right away that she was somewhat floppy. Her arms and legs seemed fine to me, her head appeared normal, but her ears were small and low on her head, her fingers looked slightly stubby, and she had a simian crease in the palm of her hand. It was not until I saw the back of her neck that I was convinced she had Down syndrome. She had what the medical book described as a "nuchal fold". The nuchal fold is an extra flap of soft skin on the back of the neck. It was quite prominent on Charlotte. This is when my tears started to flow, and I don't think I stopped crying for three days. I was nearly hysterical when I phoned my older sister, Susan to ask her if she thought I was capable of taking care of a child with a disability. She began crying and told me of course I would be able to take care of my baby, and she told me she would drive down from Santa Monica that day to be with me.

I was very scared to tell my husband the news because I wanted to spare him the pain I was suffering. However, as soon as Stephane came into my hospital room he knew something was very wrong. I was released from the hospital the next day and went home. Charlotte's blood work came back with a definite diagnosis of Trisomy 21 (Down syndrome).

Charlotte was not like my other children; she required a lot of time and energy for her feedings. She was very sleepy and did not cry when she was hungry, and she did not nurse. This meant pumping breast milk and bottle-feeding. I was tired, emotionally exhausted, and I was desperate for something to snap me out of this funk.

Every time I looked at little Charlotte, I imagined people with mental retardation standing on a street corner or in a K-Mart, with their tongues protruding, looking lonely and pitiful. I felt so sorry for them. Now my child would be one of those people that others pitied. I thought about everything Charlotte would not be able to do when she was older. She would never run on the beach, never would be married, but I was horrified that she might never speak. I think I was mourning the baby I expected to deliver and until I fell in love with the child I had, things would be difficult to bear.

I read a book called Another Season by former University of Alabama football coach, Gene Stallings, and it was just what I needed. This is a wonderful book about a father falling in love with his son with Down syndrome. As I read it, I felt a change of heart. I went to church and the prayers would not come to me, so I sat quietly and thought about things. I eventually figured out that it was I that needed fixing, not my daughter. Several months later my husband's family in France sent me holy water from the grotto at Lourdes. I remember taking Charlotte into the Catholic Church in Coronado and saying a Hail Mary and then we went to the park and I laid Charlotte down on a blanket and put the holy water on her legs, arms, neck and in her mouth. I guess I expected a miracle, that Charlotte would get up and walk or say something to me.

Charlotte is so fortunate to have three siblings that love her so much. They play with her and teach her, but mostly they appreciate her uniqueness. My oldest daughter, Justine, is 18 years old, my second daughter is Allie, 15 years old, my son, Stephane, 10 years old. In Charlotte's early years, we all worked together to get her walking; that meant many days at physical therapy and many days at the park, practicing her walking skills.

At the age of two she was walking; about six months later she was enrolled in a tumbling class that strengthened her muscles and gave her confidence. She received occupational therapy from a private therapist for fine motor development.

She feeds and dresses herself and at her school they work with her to develop her handwriting skills. I think she was about one and half when we were driving and listening to Andrea Bocelli and I heard Charlotte humming to the music. I stopped the car and turned around and stared at her. Charlotte was attending speech therapy sessions and I too, was being instructed in techniques to enhance her oral motor skills and language acquisition. I was relentless in giving Charlotte opportunities to practice speaking and to hear the written word. I would and still do read to her everyday, at least two books a day and she loves this. She loves to sing and is talking all the time. I have to tell her to be quiet sometimes. I think about how much I worried about her speaking ability. Sometimes I don't understand everything she says.

Charlotte has a bad tendency to want to run out of the house and go "explore" the world. One afternoon Justine and Allie were getting ready to go and have their school pictures taken. They were dressed up and were almost out the door, but where was Charlotte? We all ran outside and were looking for her. I saw a lady sitting on the bus bench and went over to her to ask if she had seen a little girl. The lady was Charlotte. She had on her sister's skirt and one of my shirts and some high heels. I asked her where she was going. She told me she was going to get her picture taken.

I have seen her in other interesting outfits, too. Once she came out of her room with approximately 15 shirts on, one pulled over the other and 10 pairs of shorts.

She has a notion to be like her dad. Once she took one of his cigarettes and went outside, sat down with her legs crossed and starting "smoking" her cig. It was not lit, but she had the whole look right. I went outside and asked her what she was doing, and she replied, "moking ... duh."

When Charlotte helps me serve dinner, every plate she brings out is accompanied by her rendition of "Happy Birthday." She makes the guests line up and then she gives every one a number and tells them where to sit. She is sassy and adorable and bratty and lovable all at the same time. When she gets angry with her dad, she tells him to go back to France. She tells her brother when to go to bed, and lets her sisters have it, too.

Charlotte can tax my patience and I do need a break sometimes, but when I see her after the school day or time apart, I scoop her up, give her a big kiss and feel so happy she is my girl. My whole family loves her so much and would not change her even if we could. She is the way she was meant to be. We are all more compassionate, sensitive, and loving, thanks to the lessons we have learned from our little Charlotte.

For about four years I have volunteered to help new parents or expecting parents of children with Down syndrome. Some expecting parents learn their fate in a cold and clinical setting, where they are unsure of the future, worried about their baby with Down syndrome, and are pressured into terminating the pregnancy. I find it noteworthy that the scientist that discovered the extra genetic material never ever wanted his discovery to be used to rid the world of babies with Down syndrome. Dr. Jerome Lejeune wrote:

"We can see the reappearance of the absolute misapprehension of the wish to overcome the disease by destroying the patient! We would need Molière to ridicule these people arguing seriously around the patient. 'Who is this impertinent being who will not cure, who dares to resist our art? Get rid of him!' Medicine has become mad when it attacks the patient instead of fighting the disease. We must always be on the patient's side, always.'"

Dr. Lejeune also wrote, "With their slightly slanting eyes, their little nose in a round face and their unfinished features, trisomic children are more child-like than other children. All children have short hands and short fingers; theirs are shorter. Their entire anatomy is more rounded, without any asperities or stiffness. Their ligaments, their muscles, are so supple that it adds a tender languor to their way of being. And this sweetness extends to their character: they are communicative and affectionate, they have a special charm which is easier to cherish than to describe. This is not to say that Trisomy 21 is a desirable condition. It is an implacable disease which deprives the child of that most precious gift handed down to us through genetic heredity: the full power of rational thought. This combination of a tragic chromosomic error and a naturally endearing nature, immediately shows what medicine is all about: hatred of disease and love of the diseased."

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