Thursday, 15 December 2011

DVD News

A few months ago we (my sister and I) were asked to be part of a DVD being made about Fragile X awareness.  We were interviewed and footage was taken of our boys at play.  Yesterday I got a call to say they've finished the first edit and they have also decided to put a picture of Connor on the cover.

I am very excited that Connor gets to be the cover boy.  The picture looks very cute and it's such an honour.  I'm super nervous about seeing the DVD though.  Not sure how it will be seeing myself being interviewed.  They are going to send me a copy to approve before they finalise the edit so I get to have a say....but still.  It's all for a good cause though and the more awareness there is out there the better for our kids.

Nearly everyone we've spoken too has had no idea what FXS is, which is really disturbing when you are the one explaining it to the doctor.  Even the few who have heard of it have limited knowledge (well except for our rock star optometrist that is).  I'm hoping getting more information out there will mean more interest and hopefully more research and maybe a cure.  I know that's an insane thought, but if it's just a shortage of something being made in the body and they could do something about that....well anyway, I like to be an optimist.  I call it my blue butterflies.

When I was pregnant with Connor I discovered that other women like to tell you their pregnancy and birthing horror stories, in detail.  By about month 7 I was really over the negative stuff and just wanted to focus on a being positive.  I figured going into labor with fear and trepidation was only going to make it worse than it had to be.  The whole power of the mind thing.  So I told everyone to no longer tell me the bad stories, from now on I was just going to think about blue butterflies and happy things and dream about the perfect birth.  Of course I didn't get my blue butterflies (read the page about my pregnancy and the birth) but I do still hold that philosophy.

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