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.
