Monday, October 22, 2012


That's a powerful word.  Living without fear has never been my choice for living my life.  But when I watch our family, other families, kids with sb, adults with sb...that's how THEY live...without fear.  Everyday.

This past Saturday we had the honor of attending our local sb Awareness Day.  We met with vendors, families, kids with sb (and siblings without sb) as one big fat family all bound by the same thing...the very thing that tries so hard to separate us from everyone else.  It's here that we nod along as we listen to other families describe a situation we know all too well. It's here we hug strangers that we feel we've known all our lives through the magic of FB and blog posts.  It's here that we make the connections that encourage us to move forward with whatever our own individual fights might be...the little backyard scraps each day and the big fat ugly fist fights that creep up on you and slap you in the face like a bully on the playground.

And, at the risk of sounding like every trite reality show from the Bachelorette to The Amazing Race when they constantly and tearfully comment about "their journey" and "the connections" they've made along the way, this is REAL REALITY.  We ARE on a journey and we DO make connections.

Here's a short list of who we met this past Saturday:

An author
A 34 year old sb advocate and self admitted FB addict
A sister in law of an adult traumatic spinal cord patient who sees carry over in our causes
A mother, motivated by her son to dream up this event when he was 1 year old
A mother and father who've taken their son to China & Mexico for stem cell treatments
A Senator
A child celebrating his 3rd birthday with 150 people surrounding him
A local restaurant owner (and donor of lunch!) who timidly/tearfully asked me how sb "works"
A pregnant wife and her husband due to deliver in November with an L5-S1 diagnosis looking for help

This, my friends, is a fearless group.  All I took away from this day was POWER.  The power to do more, the strength to do more.  This is the place where we go to GET educated and then we bring all this knowledge back and share it with everyone else.

Happy sb Awareness Month!  Your Education will NEVER be complete!

Here's a video from last week with her showing off what her big sister taught her how to do...

Here's an update on Little Miss Fancy Pants:

She just got her third set of braces (AFOs) and can walk walk walk all over this Land!
She is no longer using a walker (per PT).
She has started Aqua Therapy to strengthen her thigh muscles.
She's wearing Ponsetti Bar at night (it TOTALLY looks like a snowboard) to keep her hips in neutral.
She's talking up a storm and using 4 word sentences.

Ok...enough are a few current pictures... that's not really her...but it's still fab pic worth a share...!