There has been some whooHah in the paper since Chris Meney wrote an article discussing prenatal testing and the decision to terminate prengancies where the unborn child/foetus is found to have a 'little extra'/DS.
Now I can understand that the Catholic Church has a credibility issue - espousing rights - when elsewhere in the same paper we read about the appalling denial of systematic, endemic child abuse perpetrated by clergy. I get that. I know that some people are passionately anti church. As soon as I read the author description - I could have told you the ultimate stance would have been pro life - because that is the doctrine of the Catholic Church.
I was dismayed reading the online comments and the letter section of the Sydney Morning Herald though - so many people ignored the central discussion to rant against the catholic church - so that his point is largely ignored or 'lost' in the diatribe.
It reminded me of my AUnty Pat - whenever she hears that soemone in my house is not well - "Cod liver oil" becomes her mantra.
What sort of society we want is something that everyone has a stake in. As the parent of a child with DS I would have to say that my experience in parenting her is pretty much the same as for her 'typical' twin - very rewarding. Tough at times. But overall - the best thing I ever did. I didn't 'spare' my daughter the difficulty of living. I try and face it with her. Yes I worry about the future - but not that much - I know that there are lots of people who Hannah is building relationships with every day that will be there for her in the future. I don't think we are 'burdening' them - we are giving to them - the slow road, the less travelled road, the scenic route. A sense of being useful, of empowerment - because I can help someone along the way. The opportunity to look at this world and our lives through someone else's eyes. It's a gift.
So to the economists and scaremongerers, the fearful - I feel like I am having a good dose of my Aunt's cod liver oil when I read your opinions. You remind me that the world is full of differences and some of those differences are not for me. That is not how I want to measure my life or its value or the value of my daughter.
To those who feel that they could not cope with a diagnosis like DS - my heart goes out to you for your loss. It is not a decision that I am in a position to question or disagree with. I do however hope that people will always think before such a significant decision is reached, that both the positives and the negatives are considered - before a decision to terminate is reached. I hope that such a decision never becomes 'automatic' but is always one of difficulty. (please note - I said difficulty not judgement!!)
My children. I have the same dreams for both of them - good health, good friends, kind hearts, meaningful relationships, paid and unpaid employment opportunities. Sure I have a secret dream that Kit will change the world - he will use his incredible talents for good. He might even become a cardiac pediatriacian - now that is a worthwhile fantasy. Hannah - she too will change the world with her talents but I am not sure exactly what those will be just yet - maybe packing groceries, maybe a sheltered workshop, maybe an office job somewhere - you know - just a regular job like most of us do - if we are fortunate enough to have a job. Her future employment is important - but it isn't the sum of who she is. I expect them both to lead 'fulfilling' lives - whatever that may mean for each of them.
Sometimes I feel like this - like running away from it all - when the harsh gaze of others gets too much. But then - that is my take on the discussion - Hannah's voice is noticably absent. Isn't that the classic - that the person with the disAbility gets 'forgotten' in the passionate debates over their worthiness and their rights? Hannah is just a little girl, running. Having fun, learning and growing. Nothing more - but most importantly nothing less.
These photoes were taken on a typical weekend while we were out and about at a local music festival. The twins had a ball - eating icecream and climbing this magnificant tree. Our lives are rich and fulfilling - just as they are - not 'because' of Hannah or 'in spite of' Hannah - but just because this is our life. Ok I'm off to study now - I feel the sledgehammer is swinging. Cheers.
1 comment:
such a beautifully written post - as is your Hannah - beautiful!
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