Oh, oh, angel baby
warm and tender and crazy
I’ll go wherever you take me,
as long as we’re together…
It’s 1970, and the radio is blaring out the top of the pops in our family kitchen, way down in the south of New Zealand. My baby sister, Rose, just loves music. She is sitting on the couch, rocking to the beat. Rose, a bundle of laughs and smiles, is a baby who has a secret. She has an extra bit on her 21st chromosome.
Back then, pre-natal diagnosis did not exist — thank goodness. My mother was able to have a normal pregnancy, without all kinds of worries and suppositions about what her baby would be like.
I well remember the day Rose was born. Dad was present for the first time at a birth — Mum’s idea — and he came home from the hospital awestruck ; he had held her first. We all listened to the story while devouring a delicious apple pie delivered by some friends.
Our family doctor had delivered Rose, and he immediately saw the signs of Down Syndrome, but, wisely, he said nothing, not a word. Mum, with plenty of experience of babies, began to notice little things : a finger with only one joint, a little « something different » the ears, or the nose. But she just got on with feeding and caring for Rose as she had with all the others.
A few weeks passed and Rose was not gaining weight. The Plunket nurse informed the doctor, who ordered complement feeding, to supplement the milk from breast-feeding. With three-hourly feeds scheduled, all the family got involved, taking turns during the night and, at one stage, tuning in at 3 a.m. to radio broadcasts of test matches being played that year in South Africa between the All Blacks and the Springboks. You could see lights on all down the street.
One day at lunch Dad said : “The doctor is going to do some tests. He thinks Rose has Down Syndrome. But I don’t think so, she is too intelligent.”
We knew Rose – but we knew nothing at all about Down Syndrome. Forty years later expectant parents are confronted with the opposite scenario : they know all about Down Syndrome, « clinically speaking », but they don’t yet know their baby son or daughter. They don’t know the joy and laughter that child will bring, the affection, the pride in her or his triumphs — at Special Olympics and just in the little battles of everyday living.
Enjoying hot chocolate with marshmallows in it or an evening at McDonalds, Rose shows us that you can be happy with simple things in life. She loves animals and has a soft spot for pigs. So, for birthday and Christmas presents over the years, she has acquired an incredible collection of toy pigs in all shapes and sizes, even a singing pig that came from Australia.
Mothers of Down Syndrome children are also very special people. When a well-meaning person told Mum she shouldn’t expect Rose to read or write, it was like a battle call. Mum got out her paper and pens, and a year or so later Rose was inseparable from her books – she would sleep with a cache of them under her pillow.
As for writing, letters have always been her strong point. With 27 nieces and nephews, Aunty Rose is the unrivalled champion of marking birthdays (even of the in-laws) and wedding anniversaries. If she hears anyone is sick, she will make and send a get well card.
Rose is also the champion of hanging out the washing, and folding it to perfection when it’s dry. She has worked in child-care centres helping with the washing and the children.
Ever since she was five-years-old Rose has been in a school group, a special class, with fantastic, creative teachers. She and her friends stick together through thick and thin. They do cooking, shopping, gymnastics and swimming. Once they prepared a fashion show (they were the top models) helped by teacher trainees, and made big colourful hats and clothes with paper and cardboard and fancy materials. It was a hit!
Often people like Rose have cardiac problems and she has had to face the death of several good friends, but when times are hard her affectionate nature — typical of those with the syndrome — prompts her to come close to the person suffering. At funerals the family of the deceased are usually a little apart, no-one knows what to say to them. We arrived one day at the funeral of a young boy who lived in our street, and as we walked inside Rose announced, “I’m going to sit with Bede’s Mum.”
In fact, a Down Syndrome child keeps his or her mother living younger and looking younger than any L’Oreal cream can do. It’s great to watch the mothers at Special Olympics occasions, cheering on the sidelines and dancing at the evening social afterwards.
The tragedy is that parents of these children, once born, fight tooth and nail for their right to have a normal and happy life. There is a special unique bond between the parents and their Down Syndrome child, yet today this bond is often severed just as it begins to bud. Fear of the unknown drives this sad trend, a fear that is all the more tragic because it could so easily be alleviated by doctors who informed themelves about DS support groups and, in turn, informed their patients.
The good news is that there is some marvellous advocacy and PR work going on for the Down community. A video called “Dear future mom” has been created especially for this year’s World Down Syndrome Day (21 March) by several European DS associations, Spanish, Italian and French. Saatchi and Saatchi in Milan offered their expertise freely to make this video and they have done a superb job. It can be seen online in Europe, America, New Zealand, and Russia.
The video’s message to an expectant mother is: “Your child can be happy, enjoy life, and do interesting things, just like me!”
Mary Le Rumeur comes from New Zealand, where she worked as a journalist and an advocate for the unborn child. She is married and living in France, where she teaches English.