Saturday, September 14, 2013

And now in iBook format! This is my mom. A story about living with Fibromyalgia

Audrey and Maddie reminded me today that I didn't share the book they helped me write about having a parent with fibromyalgia ... I hopped over to my publishing site and lo and behold, they now have an iBook option! I haven't been able to test this version yet but I'm so happy that my girls encouraged me to share this here.

The writing of this book was a healing process for me. As a person who developed fibro in childhood, I never expected my symptoms to change as dramatically as they did in my 30s. I had particular difficulty dealing with being limited on how I could play with my children, losing my spontaneity and swallowing my pride and buying a cane.

For someone with a knee injury or the like, a cane is no big deal. It's a tool, we use it and then we're healed. For a young mother with a chronic illness, however, a cane is more than just a cane. A cane is a neon light saying, Look at me ... something's wrong here! It's a cumbersome something in a hand that really should be holding a child's hand as you cross the street. A cane is YET another thing to forget places. For the chronically ill, a cane is a visual reminder that now you are weaker than you have ever been ... and yes, you may get better. But what if you don't.

As I fumbled with my canes I tried to continue to help out in my childrens' schools and I loved the questions they asked about it. I have such a strong passion for helping children understand Big Things in ways that aren't so big.

This book came about when my eldest was in first grade and simply couldn't understand why I looked fine when I wasn't. Audrey and Maddie needed more than Mom telling them about fibro. They needed a book.

So I wrote one. I wrote this book and tested it out on my children, edited it some and then tested it out on Audrey's first grade class ... who adored it. Years later, some of those kids still come up to me and hug me or smile when they see my cane.

My Maddie is now in first grade herself and interestingly enough has begun pulling out our copy of this and asking me to reread it.

I still have days where I loathe touching that awful stick - no matter how fancy and cool my canes are, they are and will always be cumbersome awkward devices that I forget places. This book reminds me that I took that pain and frustration and even humilation at being dependent on a cumbersome awkward device (that I forget places - which really isn't usually a big deal until you loose your favorite four hours away from home) ... I took all that and I turned it into a gift for my children. Which, when you think about it, is a pretty awesome thing to have a chance to do.

1 comment:

  1. Hi I'm Heather! Please email me when you get a chance, I have a question about your blog! Heather.vonstjames(at) Thanks!!