More Normal Than Not

Catholic Communications, Sydney Archdiocese,
22 Mar 2010

The gruff plain-spoken paediatrician examined Anne McGowan's Down Syndrome baby and then looked her in the eye and said: "Your daughter is more normal than not, so treat her that way!"

"Those words stayed with me," says Anne who was determined not only to love baby Elizabeth but to do everything in her power to help her daughter realise her full potential.

Today, Elizabeth is a mature woman of 43 and has not only held down the same job at the Catholic Club in Campbelltown for the past 20 years but has lived independently in a support-accommodation scheme since she was 21.

Even more important, Elizabeth has brought great happiness to her parents, Anne and Peter McGowan and her three younger brothers and given them a greater understanding of the challenges those born with Down Syndrome face along with a real appreciation and compassion for any of those faced with disabilities of any kind.

Yesterday, 21 March was World Down Syndrome Day and attending Mass, Anne McGowan gave special thanks to God for the wonderful gift of her beloved daughter.

"I have been very blessed by God," she says.

Anne was just 23 and married only a short time when Elizabeth, her eldest, was born on 23 August 1966. 

Down Syndrome is a chromosomal disorder caused by the presence or part of an extra 21st chromosome.

"Love Her and Help her Become the Best She Can Be"

"In those days no one told you your baby had Down Syndrome and instead the doctors and nurses would wait several days, believing it was better for the mother to hear this news after she had had time to bond with her infant," Anne says. "But from the start, I knew something was wrong and when I went to see my wise lovely GP, he confirmed my baby had Down Syndrome. But he said she only had a mild form and told me I was lucky as she had good muscle tone."

His advice to Anne was to take Elizabeth home and "love her and help her become the best she could be."

Which is exactly what Anne did, but she admits that in the first few days after she received the diagnosis, she could not stop the tears.

"You cry for all the lost hopes and dreams and it's important to get that out of the way, so you can concentrate on your baby and how much you love her," she says.

While some young women back in the 1970s and 80s knew little about Down Syndrome, Anne believes God's hand was at work, preparing her for Elizabeth long before her little girl arrived.

"My best friend's mother, Dulcie had a sister who had Down Syndrome and I saw a lot of her in the years before I married. Dulcie also taught the handicapped up in Taree and my best friend and I often drove up there to help with fund raisers. Another friend had had a Down Syndrome child and had asked me to find out what I could about the condition, so I had also done some real research before Elizabeth arrived."

For Anne and her husband Peter, there was never a moment when they didn't love their first born with all their heart. And Elizabeth has more than lived up to the love her parents and family have showered on her from the time she was a newborn, along with the opportunities and support they unfailingly offered, and continue to offer.

"Which is not to say, Elizabeth is perfect," Anne says laughing, explaining that like anyone, Elizabeth has days when she can be stubborn or can lose her temper or simply be a "pain!"

Determined to be Independent 

"I am enormously proud of her, not only in the way she never forgets a birthday whether it is for me or one of her brothers or a cousin or an aunt, but for her determination to be independent, to hold down a job and the gift she has for making friends. When I arrive at the Catholic Club in Campbelltown where she has worked in the kitchen since 1990, I am always called ‘Lizzie's mum.' Everyone knows and loves her and they are like her second family."

Anne is also enormously proud of her daughter for the way Elizabeth coped with her breast cancer diagnosis and the gruelling eight weeks of radiotherapy that followed.

"She was 36 years old when she was diagnosed and underwent a lumpectomy, then radiation treatment.  Having breast cancer is tough for any woman and Elizabeth was aware what the diagnosis meant," Anne says. "Throughout the ordeal she showed remarkable courage but occasionally the pain of the treatment would get the better of her and she'd burst into tears. That's when she'd tell me, ‘Mummy it really hurts.' I'd always start to cry too, and we'd hold one another and cry together."

Now seven years on, Elizabeth is enormously proud that the cancer has not returned and proudly announces to family and friends: "I'm all clear."

As a child, Elizabeth went to a normal kindergarten but at six years old she was enrolled in a special school in Liverpool where she remained until she was 18.  She then entered a series of disabled workshops which she hated before announcing a few days before her 21st birthday that she intended to leave home and live independently.

A Gift for Friendship

"We had no idea quite how many friends she had until her birthday party when 200 turned up and included everyone from our local priest to Sr Margaret Shannon to area's Baptist Youth Worker along with the youth workers from the Anglican church and of course the Catholic youth workers. We even had bus drivers there. Elizabeth asked any and everyone and we had a wonderful time."
But almost immediately, Elizabeth moved out of the family home and into supported accommodation which was run by Sister Margaret Shannon.

"Sr Margaret was extraordinary and when the Council and Government had no funds for this sort of accommodation, she went door to door to every business in Campbelltown and raised enough to buy two houses, and then later a further three," Anne explains.

Faith an Important Part of Elizabeth's Life

Elizabeth has lived independently in this supported accommodation system with supervisors calling in daily on an ad hoc basis ever since. Sometimes she has shared her accommodation with four others with different disabilities, sometimes as is the case today, with only one other.

Brought up Catholic, Elizabeth's faith is very important to her and she often attends Mass on her own.

"Watching Elizabeth as she has grown and matured, I am reminded of what the gruff old paediatrician told me, that she was more normal than not and always to treat her as such, and that's what we've done," says Anne.

And yesterday, during the celebrations for World Down Syndrome Day, Anne's advice to those struggling to cope with the news their beautiful newborn has Down Syndrome, is not to despair and to get all the help they can and to find others who have Down Syndrome children with whom they can share experiences and play and pray.

"Talking to people going through the same experience can really help in those early years. I know I was very blessed during that time to have my best friend's mother, Dulcie who was an endless source of information about Down Syndrome and offered constant support and encouragement."