This was originally posted on my Facebook page. It got a great response so I’m reposting it here on my much neglected blog.
The 21st March was Mini’s due date. It’s also World Down Syndrome Day. Normally on this day, I’m all over social media-sharing posts, writing blogs, doing all I can to raise awareness of Down syndrome.
But this year I’m tired.
I’m tired of having to help raise €135000 a year just to make sure Mini and other kids with Down syndrome in Galway get access to regular speech and language therapy.
I’m tired of having to continually chase other appointments through government agencies that are vitally needed but show no sign of coming.
I’m tired of having a mountain of reports from meetings with the HSE but precious little practical advice on how best to help my child-the individual. A one size fits all approach does not work for everyone!
I’m tired of having to see children in my daughter’s likeness being used as pawns by a side of the abortion debate. A side who think nothing of spending thousands on billboards the length and breath of this country. Thousands that I and other parents of kids with disabilities desperately need to fund those missing therapy services for our children.
I’m tired of having to constantly justify my daughter’s existence in society’s eyes by bragging about all she can do.
I’m tired of seeing videos proclaiming how great kids with DS are just because they do the same things as ‘normal’ kids. Whatever the hell a ‘normal’ kid is.
But mainly I’m tired of trying to mould my daughter so that she fits neatly into society when it’s society that should be expanding and contracting accordingly to accommodate her perfect form.