Tuesday, September 24, 2013

In It to End It

I'm nearly embarrassed to read the date of my last blog post was months ago in *July*.  I've never liked to let life slip away so fast, but in reality I haven't been sure what to post about.  The stress of micro-managing our household with 3 CF'ers, the same treatments day in and day out, or that we've had the "Trinity needs to gain weight or we need to consider a feeding tube" talk AGAIN...nothing has come to me as worth a blog post.  It's stressful, it's crazy.  Sometimes I forget that this all isn't "normal" and I feel a bit better.

But what does come to mind as I sit down next to empty nebulizer cups and vials is our kickball tournament.  6 years of putting on a huge production to celebrate with our friends and family.  To date, we have raised $60-$70,000 alone for the CFF from this event.  And in the eight years of fund raising, if I had to guess, would be that we are nearly at $200,000.

Each year we dedicate a moment of silence for all people who have passed away from CF and share a life that has touched us personally.  As we get to know more people in the CF community it is unfortunately getting more and more common to have a personal connection to at least one person who has left this world in the past year.  This year, we have chosen to honor Theron Branch.  And while we never got the chance to meet him in person, we didn't have to to know that he is quite deserving.

My family had the honor to meet Theron's dad, Steve Branch from the country duo Branch and Dean this past August at our local-county fair.  After my mom made contact they personally reached out to her and asked that she meet them backstage with my dad and sister.
Their hit single, The Dash was written after Theron passed away after his battle with CF.  It's a huge tribute to raising and bringing awareness to the entire CF community.  Steve shared with our family that Theron's biggest fear in facing death was that his memory would not live on and would be forgotten.  Extremely the opposite.  In a small town in southeast WI we have an autographed CD from two guys that call us family now.  And Theron won't be forgotten.  In fact, he will be remembered for not only a moment, but for a lifetime-ours.

This year our t-shirts will display the words "In It to End It."  Everyone who comes out on Saturday is there for the same reason-to end CF.  And it's so close to happening for so many.

And every now and then, someone comes along like these guys and inspires us to keep going.  Keep fighting for every breath they breath.  To live our dash the best we can.  Long years or short on either end.

Branch & Dean's song lyrics begins with the years that Theron blessed the world with his earthly presence, but the title is more concerned with "The Dash" between the years.

"Your life is made of two dates and a dash.  Make the most of the dash."

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