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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 that I had to hide from my mother and Shéri. I regarded him as my grandfather and my grandmother as Shéri’s granny.

      Other people – family, friends and the public – generally paid more attention to Shéri. She was held back a year before school, so the two of us started Sub A at the same time. I remember the woman from the post office gave Shéri a box of crayons to wish her good luck at school. I got nothing. I’d just turned six and it was difficult to understand why she was given a present and I wasn’t.

      My mother also told me how Shéri and I once had to wait in the supermarket trolley while she quickly fetched something from a shelf close by. When she returned, I told her: “Mommy, someone gave Shéri a chocolate. And she didn’t even say thank you.” My frustration was even greater because Shéri hadn’t said thank you!

      Years later, the fact that Shéri had caught so many people’s attention made me feel just a little ashamed. She often had to tag along to different places after school, like orchestra practice on a Friday afternoon. She listened while we practised, ran around outside and spent the free time in between with my friends and me.

      One day I told my mother that I did not think it was such a good idea for Shéri to come to our orchestra sessions. My mom later told me that she’d been waiting for the day when I’d start feeling ashamed of my sister, and that she wouldn’t blame me if it happened. She did not, however, jump to conclusions and wanted to know more. When I told her that I was afraid people would think that I was bragging about my sister, my mother just smiled.

      I think the most important thing that I’ve learned through having Shéri as a sister is that every healthy, normal baby is a wonderful gift. It is most certainly not a given. A healthy body and mind is an incredible blessing. It’s not something that anyone of us can ever earn; it really is a huge, undeserved gift from God.

      With both my pregnancies I was acutely aware of the possibility that I might have a baby who did not live up to the world’s standards of normality. However, that did not cause any doubt in my mind that I wanted kids.

      The tests to determine whether a baby has Down Syndrome have developed over the years. With my first pregnancy, a blood test could fairly accurately determine whether there was a chance of Down Syndrome. If this test was positive, an amniocentesis was performed. With my second pregnancy, new, advanced technology made blood tests 99% accurate.

      I had the tests done during both pregnancies, the only reason being that I liked to plan my life. If I knew that the baby I was expecting was going to be disabled, my husband and I could prepare for what that entailed. The shock would be lessened and we could simply be excited about the new life. Please note: the test results would have made absolutely no difference to my decision to keep the baby.

      I feel very strongly about aborting disabled foetuses. It breaks my heart to think that a mother would deny her baby the right to life, merely because the baby does not comply with her standards of a perfect child. I cannot begin to understand how a mother could do that.

      I will never, ever consider abortion as an option. But if I were to fall pregnant again, I will most certainly have the test done. I think it is important for all parents of a child with Down Syndrome, or any other disability, to know what to expect so that they can prepare themselves as much as possible.

      Suzette

      Dearest little Shéri. My heart aches when I think about her. I love her so much.

      I was born and grew up as part of a family full of love and security. Mom and Dad loved each other, and they loved us dearly, too.

      My mother and father explained to me that Shéri was not like the rest of us – that she sometimes did things a little slower, that she struggled more than us to learn, and that she was a mongol. In those days, that term was acceptable. Only later were we told that it wasn’t nice to use that word. I always wondered what was wrong with it.

      I never found it weird to have a sister with Down Syndrome. It’s all I have ever known. She took her role as the eldest sister so seriously and fulfilled it so beautifully. She taught me many things, like pulling

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