March 21 was my due date with my daughter, Mini, who has Down syndrome. It’s also World Down Syndrome Day.
Normally, on this day, I’d be 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 €135,000 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 which 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.
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 that thinks nothing of spending thousands of euro on billboards the length and breath of this country.
Thousands that I, and other parents of children 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 children with DS are, just because they do the same things as “normal” children, whatever the hell normal is.
But mainly, I’m tired of moulding my daughter, so that she fits neatly into society, when society should be accommodating her perfect form.