sister was born, I was so excited. When my mom came home from hospital with little Suzette, I had on a pink dress and Marisa a green one. My dad was carrying a grey carry-cot with the most beautiful little sister in it, fast asleep.
When Suzette, or Zettie as we call her, was bigger, we’d put her in a box full of toys. She loved sitting there among the toys. At school she took part in many activities, just like Marisa. She started playing the violin and later the piano. After that came the school choir, the Bloemfontein Children’s Choir, hockey and tennis.
After matric Zettie studied quantity surveying. Bit then she decided that it wasn’t what she wanted to do. She wanted to help people instead. But my mother told her that she had to complete her degree. After graduating, she moved to Cape Town to study speech therapy. This is what she does now. I miss her terribly, but I’ve flown to Cape Town on my own to visit her and her family. I just loved being able to fly there all on my own. Zettie and her husband moved to Johannesburg at the end of 2016, so now they live slightly closer to us.
Maybe my sisters should tell you how they experience me as their big sister.
Marisa
People hardly ever made negative remarks about Shéri, that I’m aware of. Maybe the reason was that my mother brought us up to believe that being different was something positive. We demonstrated that belief – for us Down Syndrome had no negative connotations – and I think people around us followed our example. I also think they knew how much we loved our sister. They wouldn’t dare say anything negative about her in front of us.
I remember one holiday when we visited family in Cape Town. Shéri and I were in primary school, I was about ten or eleven. One day we were playing outside with a group of kids, most of whom were English-speaking. We only spoke Afrikaans at home. So, although I could understand English, I didn’t really know the language that well.
One of the boys made the mistake of saying that Shéri was “retarded”. I was beside myself with anger. I didn’t really know what the word meant – I’d probably heard it in movies, where it’s said to mock someone. I just assumed that he was being nasty. I went into such a fighting frenzy that the grown-ups came to see what was happening.
My mother always handled these kinds of situations very calmly. She asked me what was wrong about saying that Shéri was “retarded”. Because it’s the truth. It really took the wind out of my sails. I tried to explain that this was not the way he’d meant it, but I don’t think I succeeded in getting my argument across. Even now it upsets me to think about that boy who had the audacity to say something nasty about my sister.
The only other incident I can remember (and only because my mother reminded me of it), was something that happened at choir practice. Suzette and I were both members of the Bloemfontein Children’s Choir, and we spent hours and hours at choir practice. Our friends at the choir became like family.
Most people who grew up in the 1980s and 1990s will remember the TV series, Môre is nog ’n dag, with Chris Burke who played Corky. He had Down Syndrome and was Shéri’s hero and role model. Our family enjoyed the series. I could identify with Becca, Corky’s sister in the series, and I’m sure my parents could identify with some of the things that Corky’s parents had to deal with. Shéri always said her biggest dream was to meet Corky some day. Or to act in a TV series!
When some of the choir kids started calling one another “Corkies”, I was very upset. They said it when someone was thoughtless or did something really stupid. I didn’t know how to handle it.
On the one hand, I didn’t want to be a spoilsport because I knew that they didn’t realise what they were saying. But on the other hand, I didn’t want to remain silent; they were obviously ignorant about people with Down Syndrome.
I can’t remember exactly how I reacted, but it was probably something like: “You do realise that I have a sister like that?” They never talked like that in front of me again.
Shéri’s disability never negatively affected my belief in God. The opposite is true.
The fact that I have Shéri as a sister probably strengthened my belief. Shéri is very close to God. She believes as the Bible tells us – like a child. We used to tell one another that if you wanted something very badly, ask Shéri to pray; she had a direct line to heaven. She still does. Her example of absolute, unwavering belief has always been something that I strive for.
I think it is completely different to grow up in a home where a disability has always been present. Shéri has always been there. I do not know life without her. I would never want to change her. She is my sister, just the way she is. A normal older sister would be someone else, she would not be Shéri. So it’s never entered my mind to be mad at God about her disability or to ask “why”. She is who she is. And we love her just the way she is. She is a gift from God. And we praise Him for her in our lives.
If someone ever asks me whether I ever felt rebellious or whether I ever wondered why this had happened to my sister, I can categorically say never. It is not something that happened to her. It is who she is. It’s the same as asking me whether I’m rebellious because I have a sister and not a brother.
Shéri has definitely influenced our attitude towards people with disabilities. I am more aware of those who are disabled and I do everything I can to make allowances for them. The fact that we had Shéri in our life also made us more aware of other kinds of disabilities. At her school there were children with all sorts of challenges. Every year we attended one another’s prize-giving ceremonies, concerts and other functions, so I have been exposed to many different disabilities.
Was it difficult to be part of a family that was “different”? No, I really don’t think so. But then, we do not know any other family life.
Our family certainly attracted attention, but I sort of enjoyed it – especially as a little girl. When our minister left the congregation, the three of us were asked to present him and his wife with flowers. Years later, when the Dutch Reformed church allowed children to take part in Holy Communion, the minister asked our family to join him at the communion table as an example of a family receiving communion.
But I never felt that Shéri received more attention from my father or mother than Suzette or me. My parents never wanted any of us to feel that one was more favoured than the other two. Ever since I can remember, my mother and I were very close. She always noticed if someone paid more attention to Shéri than to me. She would then try to compensate in some way. I never doubted her love.
Shéri was very close to my dad. He had a special way of handling her, and their bond was equally special. Even so, I never had any reason to believe that he favoured her in any way. I was very aware of his love for me.
My grandmother, on the other hand, blatantly favoured Shéri! She did not even try to hide it. Shéri got to sit on her lap when she told stories while Suzette and I had to sit on the floor. My granny’s budget for our Christmas presents was R50; there was no limit to Shéri’s presents. One year she even got a CD player!
My mother made it very clear that she did not agree with my granny’s way of handling the situation. My mother and my granny were very close. We would go for coffee at my granny’s almost every day. The only time I ever witnessed the two of them fighting was after yet another act of extreme favouritism. My mother was livid. But I knew, no matter what, my mom would always be there for me and she would do her utmost to make sure that I was treated fairly.
In his own way, my grandfather also tried to compensate for my granny’s behaviour. He never talked much. Aware of what was happening, he’d sometimes call me to his room and give me a slab of chocolate
