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.


  1. Yes, we re-live the pain, leave a piece of ourselves, keep opening the wound every time we speak..because we know others who are just starting their journeys or, know those who have not been able to speak out are also in pain...alone, confused, disoriented with no map to show the path forward. Our stories provide meaning for us; we continue to learn with each re-telling. And our stories give hope to those whom we unknowingly support. We are motivated to make it easier for others. And, we KNOW things can be better; we can only help to make them better by sharing our experiences. We must never doubt this.

  2. Merry Christmas,
    You are so interesting! I don't believe I've truly read through anything like that before. So wonderful to discover another person with a few unique thoughts on this issue. Seriously.. many thanks for starting this up. This website is something that is required on the internet, someone with a bit of originality! If you want to read merry christmas quotes for coworkers you have to see the link
    Thank you,

  3. Hi,
    The very next time I read a blog, I hope that it does not disappoint me as much as this particular one.New Year Wishes Messages I mean, I know it was my choice to read, but I truly thought you would probably have something useful to say. All I hear is a bunch of crying about something that you could possibly fix if you were not too busy searching for attention.


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