Mary Caruso

Help find a treatment for Friedreich’s Ataxia!

 

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.

hour 3 & still pedaling

hour 3 & still pedaling

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!

still smiling after all that work!

 

when in the heck is she leaving?

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

  1. You are going to be so fantastic! Especially with those daughters of yours to inspire you. You’re right–they are heroes who face every day with such courage. I can’t wait to hear about this. I laughed out loud at the thought of you in jail in Portland for giving out hearts.

  2. Holly
    8:26 am on March 8th, 2009

    Mary,

    I just spent the last hour reading and re-reading your posts. So much to think about. So much inspiration. When the kids get home tonight, we are making some hearts — pronto! I will be thinking about you and the other 66 riders every step of the way.

    Love,
    Holly

  3. Laura
    4:44 pm on March 8th, 2009

    Matthew and I have our hearts almost ready? You know me, perfectionist, OCD….whatever you want to call it I have it! Matt wanted me to write; “I love you and never mind I LOVE YOU MORE” along with a heart he drew and colored in. It is on a circular piece of paper and I have not figured out how to laminate it yet. Anyway, hope your hair and nails to not grow so much on the plane that you will not be able to ride the bike!!! You are going to do great. We will all be home thinking of you and sending you our strength, love, courage for when you go over the big bridge and high hopes! Love you, Peace Out, me

  4. Suzy
    5:35 am on March 9th, 2009

    Ok Mar, so I know its scary (biking and flying) but I also know that such small obstacles could never keep you from making every effort to accomplish the task at hand! So, I, too, am making a few hearts to get to you before you leave (hopefully by wednesday?) Besides, I want to see you and I need a couple more shirts (My Mom in Florida is so excited and inspired by you!)

    My thoughts and prayers will be with you every step of the way. YES YOU CAN! (do it!)

    Love to you, travel safe and ride with a vengence!

    Suzy

  5. Cindy
    5:53 am on March 9th, 2009

    Mary, I just spent a wonderful weekend at the ACTS retreat and I prayed for you and the girls. You live your life by giving joy to others and doing God’s work. Your example is one that strengthens others each and every day. Thank you! I will be praying for you and I know our Lord will give you the abilities, the strength and the sense of humor to get through this.
    Love you Mary, Alex and Sam!!!
    P.S. Tonight is heart night I hope they get to you in time.

  6. Mark
    6:45 am on March 9th, 2009

    Go get em, Mary. So many people will be riding with you. You won’t be able to see them, but we’ll be there.

  7. Tom Hopkins
    4:57 pm on March 9th, 2009

    Hi Mary -

    We will be rooting for you from Quinebaug!

    Tom and Caroline Hopkins

  8. Tracy
    6:48 pm on March 10th, 2009

    Mary,

    Wow, talk about strength and courage… We will be rooting for you every pedal of the way. You are going to do great. Your girls have the gumption they have, because they got it from you Meir. You are there to love and support them and they are there to love and support you.
    We feel so blessed to have you in our lives.

    Bike on….

    With Love, Tracy, Jim & Nicholas

  9. Mary,

    What a terrific article in today’s New Haven Register on your heroic efforts!

    I hope Sam and Alex are happy at SCSU; I’m so impressed with everything going on there!

    Just love your blog and good luck with everything. What a great way to get the word out! (I just visited your sponsor page : ) )

    Hugs to the girls,
    Ruth Rose

  10. Sam
    7:29 pm on March 15th, 2009

    You can do it mom! I’ll call you tomorrow.

  11. Karen
    2:37 pm on March 16th, 2009

    Good luck Mary! We all love you and are thinking of you! Just pedal your little heart out and you’ll make everyone you meet smile! Karen,Craig, Melanie, Grace & Carly xxooxxoo

  12. Carolyn
    4:17 pm on March 16th, 2009

    You are so amazing. We are cheerleading from the Catskills! I love your t-shirt. Looking forward to following your blog… Your girls are so lucky to have you as a mom.