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So, what’s my blog about? A little bit of this, a little bit of that, tons about Jackson and a sprinkle of Spina Bifida awareness. Why? Because that’s our life and we want to share it with you. Hope you enjoy!

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Spokes for Spina Bifida


The 2nd Annual Spokes for Spina Bifida Motorcycle and Classic Car Poker Run took place on June 22 and we were so excited to be able to participate this year.  This event combines three of our favorite things - motorcycles, food and GRSBA!  Plus, it raises money for a great cause.  Actually, two great causes this year - GRSBA and Rochester Rookies. 


What are these two organizations, you ask?  GRSBA I've talked about before.  It's the Greater Rochester Spina Bifida Association, an organization that provides support to over 100 local families that have a loved one with Spina Bifida.  The Rochester Rookies is an organization that offers children with physical disabilities ages 6 to 22 the opportunity to participate in recreational and competitive wheelchair and ambulatory sports. 

Jason and I met up with our friend Emelio and his two girls and headed to Chili where it's been held the past two years - Jason and I on the Harley, and Emelio and girls in a Chevelle.  This was the first year that classic cars were included as well.  And it turns out, Emelio's car was the only classic car there!  


The poker run went from Chili, to Honeoye, to Naples, to Mendon and back to the Chili American Legion where we enjoyed a cookout and visiting with some of the other families associated with GRSBA along with some pretty cool motorcycle riders.  Jackson and my parents joined us at the Naples stop and finished the ride with us.  And our good friends, Becky, Sarabeth and David even stopped in for a visit too!  



Even though it was a pretty hot and muggy day, we all had a great time.  I even got my first sunburn of the season, which actually turned into a pretty good tan.  At least for my ghostly white skin.  ;)

We even walked away with some pretty awesome prizes.  We seem to be pretty lucky at GRSBA events when it comes to door prizes and such.  At the picnic last year, Jackson won the 50/50 raffle and I came home with 2 or 3 gift baskets.  At the poker run this year, my Dad won some stuff as did I.  Check out my winnings:


It now looks like I am an alcoholic, but really these work just as well for lemonade and ice tea.  And it still appears to give me an edge.  ;)

Jackson had fun hanging out with some of the other kids that were there.  It was really sweet to see some of the older kids come up and talk to him.  He seemed to really enjoy that.  What didn't he enjoy?  Me, making him wear that biker outfit and then the rousing applause that happened during the thank-you's and introductions of the organizations and people responsible for putting together the event.  Which further leads me to believe that it's time to invest in some noise-cancelling headphones.  Add that to the to-do list.


Did I mention that he's already being recruited for the Rochester Rookies?  They want him to start coming to practices in the fall to hang out and see what it's all about.  Plus, they mentioned that they do a kinda big-kid/little-kid mentoring program.  I heard that even Gregg Chalmers asked whether he was going to start coming to Rookies' practices.  Who's Gregg Chalmers?  He is the dad of Ryan Chalmers, of course.  Oh wait, you're probably asking who Ryan Chalmers is now, aren't you?  I posted a link on my Facebook page a while back about the local Paralympian who pushed across the United States in his wheelchair to promote disability sports and raise money for Stay-Focused.  Well that guy is Ryan Chalmers!

Go check out this link to see a story about Ryan crossing the finish line in NYC and learn a little more about Stay-Focused: http://newyork.cbslocal.com/2013/06/15/paralympic-athlete-completes-cross-country-ride-for-a-good-cause/

And if you want to see a bunch of pics, videos and follow Ryan's journey from beginning to end, go check out the Push Across America FB page; https://www.facebook.com/PushUSA

We had a great time at Spokes for Spina Bifida and can't wait to do it again next year.  Thank you to everyone that was involved in planning, organizing and hosting the event.  You all did a fantastic job!



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I started this blog as a way to keep family and friends, near and far, up-to-speed on what was going on with Jackson. Jackson was born with Spina Bifida and Hydrocephalus. When he was born, he had to have surgery to close the lesion on his back and then had a follow-up a month later for his shunt placement. My goal was to make sure everyone got an updateon how things were going and what better way to mass-update then the good ole interweb ;) And since everyone isn't on FB (WHAT!?!), I figured that a blog would be the next best thing.


Since then, the blog has morphed into a plethora of stuff ranging from date nights, favorite recipes (okay, haven't posted any recipes yet, but they are in the works), our dog, our house, my awesome hubby, projects from Pinterest that I actually complete, SB awareness and what's going on in Jackson's world. I'll be honest, it's 73% about Jackson and raising a child with SB, at least according to my last calculation. Oh, and pictures. Lots of pictures.


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About Me

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Robin
Gorham, New York, United States
I’m a notorious procrastinator, a Martha Stewart wanna-be (minus the orange jump suit), and I have a high attention to detail, although some people might just consider me a control freak, perfectionist pain-in-the-arse! Oh yeah, and I’m a tad sarcastic. I've been married to my best friend for 5 years and we have one amazing little toddler, Jax. Our other "baby" is a 4 year old Great Dane who thinks he's a lap-dog. All in all, I love my life!
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