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We Danced All Night to the Best Song Ever

 

 

I remember the day that Victoria came home and said, “When I tell people about dad, I can tell they think we’re a tragedy.”

 

 

I knew exactly what she meant.  I saw it in their faces, too: horror, sadness, fear.  I felt the very same things when those three letters were slapped onto Steve’s future.

 

 

But the thing is:  we’re not a tragedy.

 

 

We’re a triumph (and so are you).   We’re a spectacle of love-against-the-odds and irrational hope and unlikely joy.  My family – out in front where you can see them, and also behind the scenes where you can’t – lives a fairly never-ending dance of joy and sorrow.  I will tell you honestly that holding onto happiness has been the most difficult thing we’ve ever done.  Some days, it’s a fight to the finish and some days it’s as natural as breathing, but every day it’s worth the work.

 

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Alive, loved, satisfied is not just our hashtag.  It’s our strategy for survival.  It’s tattooed on my kids’ arms because it’s a motto that will never change.  The nature of our battles will change, the faces of our Goliaths will change,  but our marching orders will stand.

{Happiness = knowing that we are alive, loved and satisfied.}

 

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When we started planning a fundraiser-within-a-fundraiser (to raise money for our Walk to Defeat ALS team which benefits the ALS Association), we dreamed of an event that was soaked in hope and vibrant with victory. We wanted it to be fun.  And fancy.  And we wanted it to be everything that ALS is not.  In fact, we wanted it to spit right into the face of ALS.

 

 

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Thus, the event that shall henceforth be known as the ALS Fancy Dance.

 

 

 

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We gathered at a beautiful place.

 

 

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With beautiful people.

 

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And there, beneath the starry sky, we danced in the face of fear and frustration.

 

 

 

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We danced, remembering Debi’s dear husband, Randy.

 

 

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And Barb’s dear brother, Randy.

 

 

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And Buck’s sweet sister, Kay.

 

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And we danced for Steve and all those who cannot.

 

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We danced for hope.

 

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And for the dream of a future where the cure is common and the disease is rare.

 

 

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But mostly we danced because we are not a tragedy.

 

 

 

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And life – no matter how treacherous – is still more beautiful than we ever dreamed.

 

 

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Thank you to all who came and danced and hugged and ate and drank and gave.

 

 

{It’s not to soon to Save the Date: September 4, 2015.}

 

 

 

With hope,

 

Bo

 

 

P.S.  We have so far raised just over $16,000 for the Walk to Defeat ALS.  It’s not too late to donate or walk with us this Saturday, September 6 in Central Oregon.  ALSO – I hope this week to write a post addressing some of the reasons why we support the work of the ALS Association and to at least give you my take on the criticism that’s been swirling through the news recently. Stay tuned…

 

To see lots more fun pictures of the dance, check out our Instagram hashtag #ALSfancydance14.

 

 

 

 

 

September 2, 2014 - 12:27 am

Debra - This is so beautiful your story still brings me to tears. The love i see in front of me is so amazing thru this ordeal your all facing. I send you much love ,hugs and most of all support to keep going it will never end in vain.

September 2, 2014 - 8:14 pm

Kristin Motter - Love your most recent blog! Love that you all share joy and hope and love! My prayers and thoughts continue to be with you.

September 4, 2014 - 2:37 am

Jandra - Oh Bo, it’s just so beautiful.