Thursday, August 9, 2012

A Year of Learning to Walk - 2012 Buddy Walk

At 6:00 am it was pouring rain.  I started texting my husband, "Bring umbrellas."  Then it became, "Bring coats."  Finally, "Bring a change of clothes."  Miraculously the skies started to clear around 8:30 or so right as the first walkers started to arrive and the sun shone for the rest of the morning.  It was an incredible, incredible walk.  

The photographs used here were taken by our friends Mark and Nat.  Nat's website can be visited here. 

They estimate that some 4,000 people attended.  One of my most favorite parts was working with the Wal-Mart volunteers and helping them get set up for their roles-- I would thank them for being there and then they would thank me for them getting to come.  

There were buddies (ie--individuals with an extra chromosome) of all ages and their Buddy Walk teams ranged from sporty to tie-dyed to motorcycle enthusiasts.  

Menchie's brought gluten-free treats and hundreds of t-shirts.

The spirit, the energy, the love, the compassion, the acceptance.  It is so incredibly difficult to put into words.  Many of the Cowgirl Up! readers walked and donated to help raise money to fund advocacy and education in our own Northeast Ohio.  As a team we raised over $11,000.  How do we begin to thank you all for your love and compassion? It was remarkable.  

My best friend from childhood flew in from Maryland with her daughter.  My sister and her daughters traveled from our hometown to walk.  A woman I went to high school with almost 20 years ago (yikes!  that is scary to write) drove up the day of the walk and brought her daughter.  Cousins from New Jersey and Akron walked with us and helped carry the sign.  The children banded together and all carried the Joey's All Stars banner.  One of my best friends in Akron drove around and delivered team shirts despite being in a "boot" for a stress fracture.  

Two of our wonderful friends, Mark and Jon, picked up the gluten-free pasta for the Club Bud and drove it up to Progressive Field.  Nat took amazing photos to document to the day. Friends brought newborns with them and Maureen had her precious newborn, Sasha, there in spirit while she stayed back in the NICU getting stronger to come home.  The list goes on and on.  Team members raised money on their own to donate to the team.  Our friends, our friends' families and our families all banded together for a few hours on a hot Saturday morning to say, "We accept Joey just as he is and we love him." 

Could he be more relaxed with his donut?

Kelly with her boot.

We tried to thank each and every person who donated and also every person who walked.  I hope that we were able to express just how much your participation and love mean to our family. 

"Walking" seems to be a big theme in our lives right now.  I'm working on another post called "Strategies for Parents of Non-Walkers" and as it gets pushed back for other posts, Joey is actually making remarkable progress in his crawling and pulling to stand.  It's an emotional topic.  For the better part of a year I grieved that Joey wouldn't walk by the time he was two.  His older brother, Tommy, didn't walk until he was 17 months old and he was medically a "typical" child.  Joey, on the other hand, had heart surgery, eye surgery, ear surgery, a helmet and a litany of other issues in between and I'm finally realizing that him not walking by the time he will be 24 months old (in only a couple of weeks!) has suddenly become a non-issue.

For many, many months while he struggled and worked so hard to Army crawl I could never even envision a time when he would possibly walk.  My vision is changing.  My faith is renewed.  I BELIEVE!!!  I finally went out and bought him a super sturdy pair of Saucony shoes and they seem to be giving him some good support.  He has gained some confidence and seems much more motivated than he used to be to try and stand up.  It would appear that now Super Joe also BELIEVES!!!

What also helps is the team of professionals that treat Joey who also believe in him.  His Occupational Therapist told us last week with conviction and passion that he wants Joey to be able to walk in the 2013 Buddy Walk.  I had settled on him not walking until 2014, but now I BELIEVE! 

Tonight the topic is a little raw because tomorrow he will get casted for his leg braces.  All I can picture in my mind is Forrest Gump and those horrible metal braces he wore.  On the other hand, I know that this is just another part of our journey and I know that these braces will help Joey to achieve new potentials.  It's kind of like when we had the helmet.  It didn't really bother me.  It was kind of a pain to clean and get him to wear, but he looked adorable in it.  What did bother me (in the beginning) were the stares.  I know-- not everyone is used to seeing a baby in a helmet.  I'm sure that not everyone is used to seeing a little almost-2-year-old in full leg braces either, but it will become our new "normal" just like everything else does.  It's more the stares.  The stares kind of get to me.  The problem is-- I forget that Joey has Down syndrome.  I can never figure out why people are looking at us.  It's almost become comical.  On one hand, we live, breath and eat Down syndrome, but on the other hand, we don't ever really think about it. 

These theme of the walk and walking is a continued thread in our lives right now.  A huge thank you to every single person who bought a shirt, donated, walked, prayed and supported the 2012 Buddy Walk in so many different ways. 

In the meantime, I have to share this wonderful story and photo I found.  I have so much admiration and respect for Oliver Pistorius and his Olympic journey.  I have so much respect for the BELIEF his family had in him and that he had in himself.  He is helping spread awareness and change expectations in so many amazing ways.  In a world where there are still disturbing stories like this that show the ignorance and hate individuals with disabilities have to fight against (STILL!), it is so inspirational to watch Oliver and how he is helping educate the world. 


Joey-- we need to go get your different shoes!

What inspired you this week?  Do you have the Olympic spirit?  What do you BELIEVE in?

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