Monday, 8 October 2018

Paying the Piper (or the cost of remembering)



I’m sitting here, trying to write a couple of presentations for a conference I’m leaving for in a few days. As per usual, I’ve left things too long for my comfort and I wish I did more earlier. To be honest, I’ve always left things a little to the last minute – there’s no changing who I am, I guess.

But these presentations & talks that I do about our experiences through the health care system, sometimes I think I leave them for a reason. I carefully craft my message each time, and each time I go through my photos, and our history, looking for the messages I need to leave the audience with. And each time, because the lessons learned, we’ve learned through hardship, the photos bring me back to the moments I was there. And that hardship has been hardship from parenting a rare disease journey and witnessing our son’s pain and distress. And I can’t change any of it. I can only remember it.

And I feel it all again.

Does the audience know this?

Do the organizers?

Do I when I say ‘yes’?

I do this because it’s important. I do this because, I feel like I can make things better, that I can ease the way for the families that come after mine. But right now, as I take a break from PowerPoint, my photos, and my writing, I take a breath and wonder:

Do they know the cost? Will I ever stop paying?

Maybe the day it has less impact on me is the day it will have less impact on my audience. I don’t see that happening any time soon.

Until then, I’ll keep writing. Until then, I hope something that I say, or show, will ease the way for another family like mine.

Ok, back to PowerPoint.