by Trudi Wood
I believe in Santa Claus.
I understand that most adults have filed him into a fond memory bank from their childhood, but most adults don't have Margot, the forever child elf who is my sister.
Margot was born in September 1954 with the condition then known as Mongoloid idiot. Today that degrading term has been replaced with Down syndrome in honor of Dr. J. Langdon H. Down who in 1866 determined the classification of Mongoloid idiot to be a distinct condition of birth.
My parents were only twenty-four when she was born and had two little girls at home. Margot was six months old before doctors determined that she was Down's. That doctor, according to my mother, picked up the infant turned her over and said, "I'm sorry, she's a Mongoloid idiot; I recommend institutionalization." My young parents were naturally shocked and chose to avoid making any decision at that moment. Later they decided that she was their responsibility, and that they would take care of her. So, Margot came back home with them, a tiny elf of a baby with slanted eyes, a round face and a totally innocent soul.
A year and a day following Margot's birth, my mother had twin girls. So at twenty-five, my parents had five daughters under six years old. Margot couldn't yet sit up and needed a special banana-based infant formula. My poor mom had her hands full. Consequently, I learned to make infant formula and change diapers when I was five years old. My earliest memories are of my mother hanging diapers on the clothesline while I watched the babies. So, caring for Margot was the most natural thing in the world to me; in fact, I thought it odd that everyone else didn't have a retarded sister or brother. After all, most of the people my parents socialized with had special children, too, and I met many more when Margot went to school.
There were very few schools in the late fifties for retarded people, so my parents, along with others, formed a special school southwest of Indianapolis called New Hope. It was a grand place, an old two-story blue house with porches and a fenced play area. It was a private school; no allotment for the public education of retarded people had yet been established in Indiana. At New Hope, Margot learned; she went to school just like we did. Our job now was to reinforce everything she learned.
I remember sitting in front of the hall mirror with Margot in my lap holding her pudgy finger to my chin and saying words, then moving the same finger to her chin telling her to repeat them. She never talked well, but she did talk. What she said often made little sense, but she knew what she was talking about. For example, for a long time she had a word we couldn't understand--"befy" (pronounced bee-fie). One day we went out to dinner to the local root beer stand, and mom was taking orders when Margot said "befy." Dad, in frustration, got out of the car, opened the door and said to Margot, "You show me a befy, and I'll get it for you." She calmly walked up to the huge sign in front of the car, and pointed to french fries. Sometimes you need a picture, and her world of communication was quite literal. Once on a family vacation, my Gramma was teasing Margot in the back seat. Gramma pulled the hair on Margot's leg and said, "What's that, Margot?" Margot looked at it and with calm dignity, pushed Gramma's hand away and replied, "Stop it, Memaw. Thas gwass." So, she had grass on her legs; makes sense to me.
Despite the foreboding of well-meaning doctors Margot blossomed under the guidance and love of our family. She walked and ran and played in an imaginary world of Indians and drums and playmates only she could see. The child in her would last forever; the adult in her would pose a new set of problems.
Working her stubby fingers around shoestrings was a chore, but eventually Margot tied her own shoes. She learned to fasten a bra in the front and then turn it around and put it on. When she was fifteen she started her periods. This was a whole new ball park. My mom called me at college and told me. This rite of passage caused us more grief than it did Margot. Mom showed her how to use a sanitary napkin, told her it was a big band-aid. My sisters worked with her, reassuring her that she was okay, and teaching her the hygiene necessary to an adult woman. With the trust developed through years of care and respect, she accepted all that without question.
My parents tried to make her life as normal as possible, but, of course, it wasn't. We weren't normal. As we grew up, my sisters and I came to accept that we were blessed. God had granted to us the special care of this angel unawares, and it was our job to protect and nurture her. As my sisters and I married and left home, we brought into her life brothers and infants and she reveled in their love. It was when I had my own children that I realized the cost of Margot's care to my parents. As a child she had been a source of joy and pride we all cherished, now as an adult, our family, my parents in particular, were faced with yet more challenges.
Margot watched my sisters and I leave home while she simply stayed in place. She knew we loved and protected her, but as she grew older she became more cognizant of the public around her. That was when we coined the phrase, "The girl's retarded, she's not stupid!" Unlike many Down's people, Margot is very small. At forty-four years old she wears a child's size twelve pants that still need six inches cut off the bottom. She has good manners and is very shy. Consequently, we're very protective of her. Once, while lunching in a very nice restaurant, my sister Paula noticed that amid our conversation Margot was growing restless. When she asked what was wrong, Margot unobtrusively pointed to a table of elegantly dressed women who were staring at her and obviously talking about her.
I traded places with Margot so she would be facing the wall. Paula--with determined indignation--went to the ladies' table, and said, "You know you're all pretty funny looking in your way, too. My sister may be retarded, but she has more manners than to stare at you." She said it clearly and loud enough for everyone to hear; the ladies left. We resumed our meal in righteous indignation aware that we had just crossed a turning point. Margot as a tiny adult is still a curiosity to outsiders, and she knows it. She's retarded, not stupid.
In adulthood Margot learned new things, but not as often and not as well. Some things she figured out were very funny, like her invented swear words. Once in anger she quite clearly called our mother a "brat-bitch" and then stuck out her tongue. Mom was so shocked she almost laughed, but instead said, "I know you're mad, but that shirt needs to be washed! Now, go get a different shirt on!" She laughed later. Then there are times when her attempts to be somewhat independent could have horrifying results, like when she almost set the kitchen afire when she tried to cook her own egg. She tries really hard, but the impossibility of her ever being independent is a foregone conclusion.
Like every other aspect of her life, the family has accepted their role as her guides and protectors. It's a natural role for us, but never an easy one. We thought the onset of her menses was a trying time, but just try to explain menopause to someone who hasn't the capacity to understand any bodily functions. She rarely complains about anything, but when she's having a bad day we all know it. Sometimes, though, we find we've been blind to her needs. About four years ago, I noticed that she was holding onto furniture while walking through my house. At first I thought she was being silly, then I asked Mom if she'd seen her do that. Mom thought about it and agreed that Margot would have her eyes checked when she got home. Turns out the poor baby had cataracts! She couldn't see! Living with Margot has been a series of trials and errors flavored with irrepressible love, and recently with glimpses of a burdensome future.
I've never really wondered what she would have been like had she been "normal;" it's just an unrealistic question. I might wonder more what I would have been like if she had been normal. Having a Down syndrome sister has in essence helped define who I am. My family simply can't imagine life without her, but her condition is constantly under scrutinity. Recently, eleventh grade students on the New Jersey High School proficiency test were asked to explain an advantage of DNA cloning. A fair number of students mentioned the possibility of being able to clone a more perfect population; through DNA cloning we could wipe out genetic disorders like Tay-Sachs disease, sickle cell anemia, and Down syndrome. Don't misunderstand, if there were a way to prevent people suffering any kind of disorder, I'd be very happy for them. Still, would that make a better world?
I believe that one of the primary differences between people and other primates is our ability to empathize. We can feel compassion and in doing so we can care for those less fortunate. Maybe they give us a measure by which to judge ourselves. Maybe we need to be needed. The concept of a perfect human race is scary to me for many reasons, but losing our compassion is a truly frightening prospect. It would be like losing your ability to imagine and believe in dreams and legends.
That's why I believe in Santa Claus. He's a glue that holds most of the world to a simple concepts of hoping, giving, caring, and trusting. He's such a human creation that to believe in him is somehow life-affirming. As long as we believe in Santa, we can believe in ourselves--in our humanity. I'm so lucky to have my own little elf to remind me daily of the joys found in innocence and trust, but the rest of the world needs a Santa Claus to remind them.
Margot comes to my house for Christmas almost every year, and I hear sleigh bells in laughter, see stars in eyes, and hear, "ho, ho, ho" late into the night every Christmas eve. So, yes, I really do believe in Santa Claus, I'm lucky that way.
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Trudi Wood is a misplaced Hoosier living in Florida who has been married longer than she was single. Trudi has three basically grown sons, a sweet old dog, and a terrorist bunny rabbit. She has a degree in criminology with a focus on history and juvenile justice and wants to save the world, but is still trying to figure out from what.