Monday, July 03, 2006

Which Brat has Down Syndrome ... and Who Cares?

Below is a post that I wrote a while ago and kept as a draft. It represents my feelings of course but I never published it - I felt it was a bit too much like preaching to the converted and others have said the same sort of sentiments so much better than me anyway - I had decided to just let the facts speak for themselves.

Last night I read Mauzy's Musings (it is a regular read for me - Nash is just gorgeous). I was shocked to hear of Jan's distress over the story run by Indy's Child. I remembered reading the blog where she excitedly wrote about the fabulous photo shoot and how wonderful the whole thing was going to be. I even thought 'Wow! That's great. I wonder if Sydney's Child would ever do something like that?' So to read of her bitter disappointment - and believe me - when I read the article I can totally understand her position I too was upset - for Jan, her family, the other children in the picture and their families and all of us who care for someone who is 'atypical' or who has Down Syndrome.

The main thrust of the article is on prenatal testing but the subtext does absolutely nothing to represent anything positive about the gorgeous children who have been exploited on the front cover photo. How dare they? So I have decided that repeititive or not I may as well publish my original post as well as respond to the appalling attitude and unprofessionalism evident in the Indy's Child magazine.

Like many other bloggers - I would like to say:

I was fortunate. My twins were born on the 15th October 2004. One of them has an extra chromosome. Both of them are blessings for us and the world they entered.

And the earlier post:
Where There is a Will has a link to a great article from Webzine by Robert Rivera.

It is about an issue that is close to many of us I know - prenatal testing and consequent termination of foetuses with DS.

It is impossible not to take such decisions personally - after all - the message that this gives is that Hannah and children like her do not deserve to live - that in some twisted way it would be 'for her own good' - that it would be better if she hadn't been born. This is so obviously ABSOLUTELY WRONG!! Why is there such a fear?

Believe me I know the grief of having a child who doesn't fit in with the 'regular' mould. I hate that she has to struggle for things that come so much more easily to her twin - like sitting up, crawling, walking, forming words, holding a crayon and so on. It is really important to remember though that she will do all those things ... She is such an amazing and strong willed brat that she meets each challenge head on and so far triumphs every time in time.

I used to hope that those who decided to terminate based solely on a DS diagnosis would go on to breed a serial killer or drug addict or an 'ungrateful child' - anything that they might find 'undesirable' really and that could not be detected prenatally. I am a bit more sympathetic now - I think that too often these people must be operating from fear of the unknown in difficult circumstances and it doesn't seem that the medical community is very good at providing them with real choice. That is where our children and their families and friends come in - hopefully in our own ways we can help change some of these perceptions about supposed 'imperfections'.

Being a parent should be more about the child than the parent - that is just the way it is. Children are their own persons from the minute they are born - we can only love them and provide a sound environment for them. Their value is intrinsic - it shouldn't have to be earned. The same can be said about adults too - it is just that sometimes it is harder to see.

So once again to the writer of the article in question - yes you are fortunate - of course you are! But so too am I - it just means that you have to stop and think and put aside your prejudices and fear of the unknown before you can truly appreciate that I am not making this up:

I was fortunate. My twins were born on the 15th October 2004. One of them has an extra chromosome. Both of them are blessings for us and the world they entered.

To the editor: You are responsible for the content you present in your magazine - I hope that you are going to balance this article with accurate and quality information rather than uninformed fear - it is the least you can do.


Michelle said...

This is a great piece you wrote and I'm glad you decided to share it!

Tara Marie said...

I love looking at photographs of your boys...they are both so precious....and that red hair just melts my heart!

I thought your thread was wonderful. It is such a difficult issue....and you spoke about it so eleoquently.


Camille said...

Thank you for sharing your thoughts. Never restrain from expressing because, when coming from the heart, these thoughts can only make someone else feel good, or blessed, or understood...
P.S. See the photos of Emma's new hairdo on my latest post... The little rascal!!!