Facing losing her brother to pneumonia, Chrissie reflects on her life as a sibling of someone with Down Syndrome …
“I was just 16-months old when Steven was born – far too young to realise that Steven was ‘different’ from other babies because he had Down Syndrome.
My mother was just 26 years old and (as was common in those days) was not told that my brother had Down Syndrome for a number of weeks after his birth. The first couple of years were very difficult for her as there were problems with his feeding and sleeping, and he never achieved the usual milestones. My parents persevered and Steven thrived into a bubbly toddler with round, rosy cheeks and a ready smile. We soon became playmates and happily enjoyed digging holes in the lawn and burying our toys in the sandpit. We shared a bedroom and lots of laughter, even when we were both covered in measles.
I soon became aware, however, that people would look at my brother when we were out and about, talking behind our backs. When I was just five, a lady in the local supermarket told my mother that Steven should not be allowed out and should be locked away. This was too much for me and I remember pummelling her coarse woollen coat with my fists, telling her not to be horrible about my brother. I am so pleased that attitudes have changed because people with Down Syndrome have so much to give and to teach others.
At 7 years old, my parents decided that as he could not be educated in a ‘normal’ school and, as there were no suitable alternatives available, it would be best for him to go to the Rudolph Steiner Boarding School in Thornbury (Bristol). We had visited the school and it had certainly been a happy place – the children there were learning how to read and write alongside acquiring social skills, such as dressing themselves and how to use money. I was devastated by the news that Steven would be going there and can still see his face and hear his cries of anguish as the train pulled out of Paddington Station that September.
I missed my brother tremendously, especially his innocent smile and great sense of humour – even his stubborn defiance over which coloured bowl he wanted his breakfast in or which trousers he should wear. He seemed to find humour in everything. If he saw a lady walking down the street in a funny hat – he would always say so! Similarly, Steven would either like or dislike someone within moments, and could never say why he felt uncomfortable about them, but usually, his hunches were right!
The school holidays were fun and we would take the dog for a walk, dam the stream at the bottom of the garden unsuccessfully (luckily for the people living down the hill!) or play on our garden swing. Steven had been delighted when Dad erected it but hadn’t given him the chance to set the legs in concrete before he swung too enthusiastically on it and went flying into the lilac bush! Steven was given his first Thomas The Tank Engine book and instantly fell in love with Thomas and his friends. Lying in his hospital bed, 45 years later, he was surrounded by Thomas memorabilia! Steven was always sociable and would strike up a conversation with whoever we met and always filled our house with love and laughter – innocently telling our parents that I was responsible for any misdemeanour!
I know that life with Steven was stressful for my parents, as he needed more care than my younger sister and I, and after funding his first years at the school themselves, they worked really hard to get a grant to help them.
When he was a teenager Steven was really ill with pneumonia and for the first time there were concerns about his future because, at that stage, many people with Down Syndrome died in their teens and early twenties and we had to face the fact that Steven might not make it. I sat quietly by the lilac bush, shocked that my brother might not be like Peter Pan after all.
Steven pulled through and was soon happy and healthy again, although his teeth were crumbling a little and he needed glasses to get the best view of Thomas! When he was at school-leaver age, he moved to a Camphill Community, which he loved – and still does. Suddenly his days (and our home) were filled with the different crafts he was being taught. He proved to be really gifted at woodwork and weaving, but not so reliable in the kitchen where he had the motto “one for me and one for the pot”. Whilst some of his friends were able to work in the town at one of the supermarkets, Steven was better suited to working in the onsite café because of his friendly and often compassionate attitude – although I think it was because of his love of the cappuccino machine and homemade cakes too!
The years continued to roll by and just three years ago, Dad died suddenly. Steven asked if he could say something at the funeral and stood so bravely by the coffin containing the father he adored and talked about him and how much he would miss him. His tears began to fall and ours did too, united in grief by my brother. What a blessing Steven has been to our family…”
After 5 weeks in hospital, 3 of which were spent on life support, Steven made a full recovery and is looking forward to his 60th birthday this November.
Please Note: To protect Steven’s privacy, stock imagery has been used for the photograph shown at the top of this article.