It's quite another to finish the thought with '...and neither should anyone else.'
I ran a Google search this morning in search of a definition for the term 'trailblazer': a person who makes a new track through wild country.
Appropriately, when the trail you wish you blaze is a literal trail, you sign up for a 100 k race and train until you're ready to blaze. Me, I'm going to burn up some terrain in just under two weeks' time. Yes, of course I'm doing it for me, but it occurred to me the other day that I also want to do it for my Rukai. And to do that, I need to pass on some really important information.
(If you're still with me, thanks.)
Trailblazing. New tracks. Wild country.
How wild is the trail that navigates through the lost world of medical misinformation about possibility when it comes to disability? What if the trail about which I'm writing is one bordered in thorny opinion, cobbled with unforeseen pitfalls? What if it's always been unmarked and unnoticed?
What if one important day, someone said 'I'm not going to accept that' and began to map out that journey?
The result: Positive About Down Syndrome (PADS) - an online community written by families for families which has set out to draw back the curtain and expose the true wizard of Down syndrome - by sharing stories from that strange and amazing place called 'Lived Experience' which has eluded most professionals for decades merely by omission from the literature.
Leaflets full of facts and figures and symptoms and medical prognoses were thrust in my hands when Rukai was born. The folk wearing stethoscopes may have thought I was well equipped for the journey. But theory does not laugh. Statistics don't dance. Paper doesn't hug. Truth matters. The whole truth and nothing but...
I've no idea if I've written of this before but it matters here: I shudder to think what may have happened in our lives had I known before Rukai was born that he would have been born with Down syndrome, largely due to the total imbalance of the information available to me at the time. I live with that knowledge every day and it's wrapped a piece of my heart in those thorns. But I know that in retrospect, had I been given full and balanced information back in the day, if society weren't so pathetically misguided about the realities of life for someone with Ds, my personal picture would look dramatically different. That fear, nothing more than a blip on the radar. But it scarred. I simply don't want that to happen to anyone anymore.
I've written for years about my Rukai's possibility and have always tried so hard to not let the negativity in the ether bring us down. Nicola Enoch and that group of amazing PADS advocates have taken this to another level. Down that new track, through that wild country. Blazing, blazing.
What I wanted when Rukai was born is what I imagine what everyone would want at such a worrying time - someone to tell me it's not a disaster. Life is different, but life is fun. Life can be challenging but everyone's life is challenging. Life is life, and we are most certainly ALIVE.
I feel most alive when I'm blazing those forested and mountain trails.
PADS is blazing that other trail, giving life and hope and positivity to people just like us. People who should not be coerced into fearing the unknown.
But the website is only the tip of the iceberg and there is yet to be much more amazing work to come, so here's my ask:
Take a look at the website and read other lived experience from families who are also feeling Positive About Down Syndrome.
Check in with me on the weekend of July 13-14 when I'm running the Action Challenge Peak District 100k, when I'll be live streaming updates from the run when I have a signal, and sharing a few bits and bobs about exactly what else Nicola and everyone at PADS are achieving as they blaze this trail.
Consider making a small donation to their crowdfunding page (https://tinyurl.com/y4er87ja) so they can fund more projects like getting the language about Ds changed on websites like Bounty and the NCT, getting leaflets into hospitals so families like ours can go forth and blaze their own trails.
If you can't afford to donate, please share the website (http://www.positiveaboutdownsyndrome.co.uk/) or this post in full. Awareness is everything.
Burn baby burn.
