Author Peter Rix relives the moment his baby was born with Down syndrome and takes us on a journey of hope and love, which prompted him to write his novel Water Under Water, inspired by his unique daughter, Joanna.
“I need to tell you, Mr Rix, this baby of yours … ” In a room off the maternity ward, the gynaecologist gives me the bare facts and hurries away. I stumble back along the corridor to the delivery room, stand at my wife Jenny’s bed, searching for the words to deliver the news.
That moment is as tangible for me today as it was 33 years ago. Many other moments, too, that followed hard on its heels; the first numbing hours of knowing, but not really knowing, dark, unfathomable days of struggling to get my head around a new language of alien words — for us back then, “mongoloid”, “retarded”, what is a “syndrome” exactly?
In pictures: 10 things not to say to kids
And then weeks of feeling that, although Jenny and I were the same people we had always been, our lives had been stripped away and replaced with a confusion of questions and tears and desperation. There was the overwhelming sense, too, that nothing could ever be the same again.
How has it been then, to be the father of a child — a young woman now — with an intellectual disability?
At a personal and family level, life with Jo has also been a roller-coaster ride of emotional highs and lows. I remember reading an article that included the learned statement: “Children with Down syndrome tend to be quiet and compliant, very loving, but unresponsive to stimuli.”
Quiet? Compliant? You must be joking! There I am with five-year-old Jo in the local mall. One second she’s right beside me and then she is gone. Vanished. How could any child disappear like that, let alone one supposed to be “unresponsive to stimuli”? I charge around in a frantic, futile search, then get security scouring the place.
When I call Jenny to confess, she calms me down … and sure enough, here comes Jo, wandering out from behind the counter of the ice-cream stand, holding aloft her triumphant double-scoop prize. My emotional outburst of frustration and relief is met with amazement. “But Dad, I wasn’t lost, I was here all the time helping the ice-cream man.” And then an admonishment. “Maybe you were lost.”
It was always too easy to jump to conclusions with Jo. Take the “holiday ranch incident”. Jo at nine, exploring while the rest of the family relaxes. Until we notice that someone has released all the hens from the chook run! It takes forever in the heat and chook-poop to round them up. Finally, we get them all back inside and Jo cops a serve from everyone.
Later, the ranch boss waggles his finger at us. “Those hens are free-range! You’ve put them right off their laying.”
“Disabilities people always get the blame,” Jo tells me tearfully and I learn a lesson about making assumptions.
Related: New blood test reveals Down syndrome in fetus
Then there is the day that I can hardly bear to recall, years later, when she rages, “Dad, you don’t know what it’s like for me in my life! Michael and Suzanne [her brother and sister] get to have everything, like uni and boyfriends and girlfriends and drivers’ licences and proper jobs, and I only get to do disability things.”
We give her as much independence as we can. She shares that right with the rest of us, doesn’t she, to live a life that is useful, fulfilled and hopeful? As she said to me once, “I can do lots of things, but I can’t do anything about the Down syndrome.”
Read more of this story in the June issue of The Australian Women’s Weekly.
Your say: Do you know a family with a child with Down syndrome?
Video: Julia Gillard announces National Disability Strategy
Related stories
Native ad body.
Native ad body.
Native ad body.
