Shéri: Just the way I am

Shéri

Just the way I am

Shéri Brynard and Susette Brynard,

as told to Colleen Naudé

Lux Verbi

Idedicate this book to two people who meant so much to me, but who are sadly no longer here to share my life with me.

My father, Jerry Brynard, accepted and loved me right from the start. He teased me and played with me. He was so proud of me, just the way I am. I miss him every day, but especially when wonderful things happen to me. I wish I could give him a copy of my first book, signed by me, of course!

My grandmother, Sarie Horak, taught me patiently and spoiled me rotten. I knew that she would do anything for me. And she prayed for me. Those prayers are still with me every day. I will always love my granny.

I thank my Heavenly Father for these two wonderful people.

Shéri Brynard

October 2017

Writing this book was a leap in the dark. It was the proposal by Maretha Maartens, motivated with wise insight after hours of discussions with Shéri and me, that convinced Lux Verbi of the idea. Maretha was also convinced that the Lord would entrust the right person with writing the manuscript. Which He did.

Maretha, thank you for doing the spadework for this magnificent project. And for enriching my life through your humbleness, your love for God and for your fellow human beings.

Susette Brynard

October 2017

Foreword

S héri – Just the way I am is the remarkable story of an exceptional young woman from Bloemfontein. But it is also the story of a formidable team: Shéri Brynard and her mother, Susette.

Shéri has Trisomy 21 Down Syndrome, which means that every cell in her body has one extra chromosome: 47 instead of 46. Blood tests done shortly after she was born shattered any spark of hope that it might just be Mosaic Down Syndrome, the type where only some cells are affected. However, Shéri’s parents refused to allow Down Syndrome to rob her of a meaningful life. And she made the most of every opportunity afforded her.

Shéri has reached greater heights than anyone else with Down Syndrome in South Africa. Every milestone on her journey of 35 years has been the result of extremely hard work, a strong will, perseverance and a deep dependence on, as well as trust and belief in God, sometimes in very difficult and sad circumstances. It is also the result of her parents’ determination to raise Shéri in a way that would enable her to take her place in society and achieve her full potential.

And now she has written her life story, supplemented by my interviews with her. In spite of Shéri’s achievements, some people with preconceived ideas of Down Syndrome might still be sceptical and find it difficult to believe that this was indeed her own work. I’ve edited the parts written by Shéri (in her home language, Afrikaans), just like those of any other person telling his or her story. To do more was not necessary in the case of this young woman, with a diploma in Educare and who travels the world as a motivational speaker. In the process I did, however, try to let her voice shine through (even in this translated version), in the same way that I tried to retain Susette’s voice in Part 2.

Shéri – Just the way I am is an inspirational story that will challenge people’s perceptions of Down Syndrome.

Colleen Naudé

October 2017

Part 1

My life with Down Syndrome

Never giving up

Who is the greatest perfectionist in our family? I once asked my mother. Dad! she answered without hesitating.

My father’s extreme perfectionism was evident even after his death, when my mother had to look through his filing cabinet in search of funeral and other policies. She could hardly see through her tears. But when she pulled out the drawer, everything she needed was there, almost as if my father had known that something terrible was going to happen at the Augrabies Falls and that my grief-stricken mother wouldn’t be thinking clearly.

I find comfort in the ordinary routine of my life and I flourish when everything is properly structured.

My mother’s sense of order is clear from all the albums and files that she meticulously keeps up to date. Also at her office at the university. She likes clean curtains and framed photographs. She cannot stand it when the curtains are covered with dust after a wind storm in the dry winter months.

In her office (and in her life), every single thing has its place, even my pillow and blanket for when I am unwell. While she is lecturing or marking student papers, I lie on the carpet behind or in front of her desk.

In photographs of my grandmother, Sarie, I notice that her hair always looked smart. When she was getting on in years, her grey hair was neatly waved, like that of the women in paintings by the old masters in museums overseas. My sisters and I liked to take photographs of her, posing with us for yet another one.

Photographs portray moments in time, my mother says. The ones with Granny Sarie tell of many beautiful moments. I remember my granny’s softness, her clean smell.

I always made sure that I sat close to her. But after photo sessions like these, she often had to use oxygen. She suffered from emphysema for 30 years, and during the ten years before her death she had to use oxygen constantly.

She carried her illness with grace. She never uttered a negative word about it. Even during this time, my granny would always ask: Does my hair look tidy? And: Oh no, just look at all these brown spots on my hands!

I think I had the same idea about both my father and Granny Sarie: that other people die and are buried, but not my dad or Granny Sarie. The two of them, I thought, would never die.

Many people like routine and structure. It helps to make new places and new things seem less daunting. They like it when promises are kept. An orderly structure makes them feel safe. But I want even more than this kind of order.

In our house my dad was the middle finger, because he was tall and (sometimes) slim and as handsome as can be. In his forties, he became even better looking after he got rid of his moustache and bought a very classy pair of glasses. So, in our family of five, Dad was the middle finger, Mom the index finger, Zettie the little finger, Marisa the slightly longer one – between the little finger and the middle finger – and I am the thumb, who can’t stand soil under my nails.

I like my nails to look neat.

I wipe crumbs from the school children’s mouths. I also wipe their noses, if they cannot do it themselves, but luckily most of them can.

Actually, I’m quite a bit like my mother. She’s taught me to pick up anything that is lying around and to put it where it belongs. These days I teach the school kids the same thing. But sometimes I pretend not to see that my room is not clean and orderly!

Some of the school children call me Shéri, but some of them address me the same way they do Mr Hugo, the school principal, or the other teachers. Many of them cannot talk; they make sounds or touch my arm and look right into my heart, past my eyes.

I have known Mr Dawie Hugo, our principal at Lettie Fouché School in Bloemfontein, for years and years. He was the one who gave permission for my parents to enrol me at Martie du Plessis School. Until then I had attended Lettie Fouché, the school for mentally challenged children, where I now work.

When Mr Hugo was appointed principal of this school, things really changed for the better. When I was still in the baby class, the teachers repeated things over and over, trying to teach us, but some of the kids never even managed to count from one to ten or eat with a knife and fork.

Some of them repeatedly hit their heads against a wall. The teachers and assistants would take them away, only for them to go back and do it again. I tried it and it was quite fun. When I started doing that at home, my mother scolded me, so I’d slip away and do it against other walls. This was when my mother started making other plans.

She dressed me like a little princess, tied my hair in cute ponytails and took me to Martie du Plessis School, where children had to have a normal IQ, but had to cope with other challenges like dyslexia or some physical disability. Our child, she pleaded in the principal’s office, needs more stimulation. We will do our part. Please …

The answer was no.

Children with Down Syndrome would never cope with the normal curriculum. The children at his school were not intellectually challenged; they merely had special needs. A child like me, my mother heard, would give the school a bad name.

My mother did not take no for an answer. Shéri has special needs, she said. These needs cannot be met where she is now.

Giving up does not exist in my mother’s head or vocabulary.

One day, after many prayers in our home, the principal unexpectedly phoned my mother about me.

She took me back to the school, but this time she didn’t do anything special to my hair or the shoes or the dress I wore. I looked quite Down Syndrome-ish.

She told Mr Hugo, then the deputy principal, she would do her best to ensure that I did what normal children did. She would make sure that I did my homework.

Our multidisciplinary team has agreed to test her, he said.

My mother wanted to know whether she should stay. If so, she’d put in leave at the office.

Not necessary, Mr Hugo said with a broad smile. Shéri will come here for three days and spend time with the teachers, the occupational therapist, physiotherapist, our school psychologist and other kids of her age. Just drop her off. And don’t forget to pack her something nice for lunch.

My mother was told that they would be giving me IQ and cognitive tests, to determine whether I would cope emotionally.

I could not get enough of the tests. There were puzzles and blocks, all sorts of things to count, forms to identify, like triangles, squares and circles. I had to colour in pictures and finish sentences. Nothing was repeated over and over again.

The children in that school really worked hard. I heard class groups singing and saw children walking in lines from one classroom to the next. I counted and drew pictures and talked, and time passed far too quickly.

That school felt like my kind of place. Break was wonderful. The teachers took me to sit with the other children. And yes, I did look at what they had in their lunchboxes! There were peanut butter and cheese sandwiches, drinking yoghurt, chicken legs, small fruit juices, packets of chips, pink and green Fizzers, even fizzy cool drinks. I had a sandwich, a piece of fruit and a small fruit juice in my lunchbox. Not a single sweet, no chips.

Every day my mother was worried that I might not behave myself.

Once all the tests had been done and my results had been interpreted, my mom and dad received the news that I had been accepted as a learner at Martie du Plessis, as part of the nursery group.

Your little girl worked as though her life depended on it, one of the teachers apparently told my parents. She worked her way into this school!

But I really enjoyed it. Only later did I start to realise that I would have to work as if my life depended on it everywhere and always. That only one time out of ten I’d be able to say: Now that was easy!

Nowadays, as a teaching assistant at Lettie Fouché school helping kids with writing and reading, I know and realise that nothing feels easy for them. But we persevere. I have to, they have to. Because when you’re slow, you have to give it your all. You have to soldier on and on, until people start realising that you too have a place in society, where you mean something to other people. You have to work harder than other people and not lose hope.

When I teach the children the correct way to hold a pencil, I notice how hard they have to work, how sometimes they do lose hope. But we cannot be satisfied with second best or almost right. We have to carry on, until they succeed.

This is what my mother expected of me, so that I could go to Martie du Plessis. She sometimes had to help me get dressed; I could really take my time getting ready.

The school bus picked me up at about quarter to six, when my dad was still snuggled up in bed. I had to be good, walk straight into my class, greet my teacher and finish the pictures that I had to draw, my mom said.

She made a long list of rules. I was not allowed to ask other kids for sweets or biscuits and under no circumstances take anything from anyone’s lunchbox. Even if I really wanted to taste it, even if I was craving it. I had to eat my own sandwiches and fruit.

I had to make sure that I didn’t lose my white sandals; I had to look people in the eye and listen to my teacher from the minute I walked into the classroom until I left at the end of the day.

At home, around our dining-room table, I had to learn to look whether anyone needed anything: salt, sugar, milk, salad. Normal, well-behaved children are considerate and disciplined, my mother and father used to say.

I really liked my teacher and my classmates: the little boy with the glasses which looked like my dad’s binoculars, the little girls who dressed so beautifully. Four of the kids were in wheelchairs and one of them always wore red shoes. My teacher, whom we called Juffrou Hester, chatted happily with us, also in Southern Sotho.

In our classroom were books about cars and animals and Spot the puppy, a big doll with hair that we could comb, a workbench with hammers and other tools, a toy ironing board and a doll’s house. Outside there were bridges made of old tyres that crossed rivers full of crocodiles. You had to walk very carefully, one by one, or you could cross together, because the crocodiles were only make-believe.

My teacher said she was so proud of me after I’d finished the very first nursery street mile on 11 April 1986. I was four years old. She asked me how I did it; a street mile is long. I told her that I just carried on, that was all. And I did it in my new white tackies.

It is the Lord’s story and I’m part of it

I was 31 years old when I started thinking that I should write my life story. So much has happened in my life.

I remember the day on the school bus when some of the big boys asked me whether I could run fast. Of course I wanted to show them that I could. When the bus stopped, I got off and ran home. I fell, blood streaming from my knees. I did not want to look back; I was crying so much. I think I heard the boys laughing.

About a year later I wanted to run the 400-metre race for the Red team at school. I was lagging far behind, but then the teacher announced: All the members of the Red team will now finish with Shéri. And everyone joined me for the last lap, the boys too.

But when I turned 31, I also remembered how I had met Oprah. It was in 2011 when Prof Jonathan Jansen, then vice-chancellor of the University of the Free State, invited me as guest of honour to meet Oprah Winfrey when she was awarded an honorary doctorate by the university.

And I remembered being trained as an educational assistant at Moteo College.

When I turned 31, I decided I should write down everything that has happened to me since the day I was born. Because it is a story. It is the Lord’s story and I’m part of it.

I borrowed my mother’s diaries and started reading. I looked through albums and asked my mom many questions. This is how my life started:

When my mother heard that she was pregnant, she was ecstatic. She’d always worried that she’d never be able to have children, maybe because she wanted to be a mother so badly. She was 25.

It was a pregnancy without any complications. The most interesting fact was that I moved very little during the last trimester, apparently one of the signs of Down Syndrome.

At some point during her pregnancy, someone from the Department of Genetics at the University of the Free State gave a talk to the biology class that my mother taught at Oranje Girls School. The lecturer explained what caused babies to be born with disabilities.

Afterwards, when my mother told the lecturer that she was pregnant, she said that she would never have given that talk had she known. My mother just laughed and said that it wouldn’t happen to her and, if it did, she would handle it. She was not going