WELL! the bike is officially gone!  It shipped out today, Pedal Power called me to tell me it went off into the sunset headed for GULP…….Portland, Oregon Residence Inn.  There it will be unpacked and put together by one of my more seasoned partner riders, Bart Rupel.  It’s kind of lonely around here without the bike.  I am so used to it taking up the whole den area.  You know, smiling at me with those shiny handlebars.

It has become an appendage of sorts….you know really attached to me at the seat!  Now I have to go borrow Jackie’s bike just to keep up with the pedaling.  I would hate to have worked so hard only to forget completely in a week how to sit on that thing and move my legs around.  I think I can do this!  I know it won’t be easy but tonight I watched Sam and Aly  in  PT sessions with Nicki and Jared.  I can’t help but admire the strength and courage it takes to work so hard to practice just sitting up!  It is one of those kind of  private things that most people don’t realize when they see the girls.  Those many hours that people never see. She is having a hard time not tipping over……this is typical with Friedreich’s as you lose muscle control.

 So for quite a long time the two of them faced each other and Nicki coached Sam on holding in those ab muscles and sitting up straight.  Then Alex worked with Jared and practiced pulling those bands to keep her muscles strong and stop the progression that weakens them more each day.  Nothing that am going to face on Ride Ataxia 3  can possibly compare to that.

Working so hard to try to keep this disease from wasting

away what muscles you have left.  What did I say? I  think I can do this?  No I know I can do this!                         

 I can do this for the

respect and dignity of Sam and Aly and all the other people facing their lives dealing with Friedreih’s Ataxia! I know it will probably be a humbling experience (I wonder how many other riders I will hit) or how well I will do on this ride or even if I can make the whole thing….. but that is something that will make me a better person a more appreciative person… YES……a better person. That is part of the reason I originally decided to do this!                                       

    

still smiling after all that work!

 

when in the heck is she leaving?

 

 

I am getting some great hearts in and some wonderful feed back on class rooms of kids doing hearts.  Rob Miceli was the first teacher to answer my call for hearts.  He is an amazing man, a true hero.  Alex volunteered in his room last year and had such a wonderful experience.  It is so comforting to know that we have this open and creative man who teaches so much more than academics to his classes, he teaches acceptance and kindness-mostly by example!  So please try to send me a heart.  It can be any size (remember if I gave you one specific size they wouldn’t be diverse they would all be the same-now that isn’t what we are looking for).  It can say anything that is inspirational to you! You can sign your first name as well as your town and state.

I will write on each one that someone who cares took the time to write it.  There will be a link to this blog so we can hopefully follow some of them and begin dialog on kindness in the world.  I am working on a badge that will say: “Ask me for a heart”

I will either connect all of us with hundreds (maybe thousands?!) of open hearted people or end up in jail.  Either way it will be interesting….and if it is jail I can bring the hearts to jail!

So thanks for all the support, it really means so much!  This will be a nerving week getting ready!

Did I mention I am soooooo afraid to fly?  

Until the ride…………

In Peace and Love

Always

Mary