Showing posts from December, 2014

Huntington's Disease Support - The Good, the Bad, and the Ugly

"The note of hope is the only note that can help us or save us from falling to the bottom of the heap of evolution, because largely, about all a human being is, anyway, is just a hoping machine." ~ Woody Guthrie
For several weeks now, I've been participating in a Facebook forum "Huntington's Disease Support - The Good, the Bad, and the Ugly."  The posts on this page have been enlightening and a blessing.  Folks ask questions, seek advice, and lay out their heartache and fear.  We have even had a discussion about meeting up at the HD convention this summer in Dallas.  I'm putting the link to the FB page on my blog page. 
I've been able to touch base with some folks who, like our family, struggle with explaining this disease to a child or sibling who is also developmentally delayed.    It is comforting to know that we are handling this as best we can.  We rarely talk to Lacy about HD, simply because he does not accept our explanations of why he is be…

Everyone has a plan...

"Everyone has a plan until they get punched in the mouth." ~ Jack Reacher

When I read this during my recent foray into one of Lee Child's Jack Reacher novels, I had to write it down. I shared this quote with many friends over the last couple of weeks, and everyone nodded their heads in silent agreement.  Rather than the kindhearted "Life is what happens while you are making other plans" I prefer the brutally honest Reacher observation.

HD is that punch in the mouth that instantly re-routes our plans.  Just as if we've been attacked, HD brings us to our knees, but we get up and we keep going, just not in the same direction we had been headed.  We are still strong, and still determined to persevere.

Right now, Kenny and Lacy and I are living each moment.  Lacy's physical decline continues, but we try not to focus on that.  We focus on the opportunities we have to rise above the physical decline to see the gifts we still have.

The fictional Jack Reacher&…