Tuesday, March 30, 2010

Taking my Medicine

The bottom line is I guess - in all the discussion - for me - unavoidably - this is the face I see. I could not imagine a world without her in it. It would devastate me.
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:

Michelle said...

such a beautifully written post - as is your Hannah - beautiful!