Living with CMT, Days 25, 26, 27, 28, 29, 30

Phew, watch time slip away:) This weekend was a fun distraction.  I loved seeing everyone.  The beach.  Waves.  Everytime I see churning waves and white water, I think, oh, I know that feeling. Getting caught and tumbled.  Sucked underwater.  The roar of crashing water.  And that tempting quiet of the deep, if only I could get past the noise and wild-ness, oh that sweet rest of dark water.  Not in a literal way, of course.  Just how overwhelming everyday life can become.  How important it is to touch quiet space every now again.  The ocean is all things.  Loud and quiet and strong and gentle.  Scary and fun and serene.  To love the ocean is to embrace it all.

That is a tangent, all right.  A thinking for all days, not just days when the pain takes center stage or the fatigue drags at my every step. I find disability does not change life.  Rather, it can amplify certain aspects of life.  Like my tendency to fill my days with stuff, chores and work and cooking and cleaning, countered by a need to slow down.  Sit with the kids.  Mellow out.

We have an idea :).  A place to support families living with challenges.  Which is all families, really :).  But especially for the disability community.  I was a child with undiagnosed challenges who heard try harder, pay attention, watch the ball.  I am a mother with two amazing children that I want to give the world.  I love living.  I work and travel and thrive on adventures.  And perhaps I can help connect all of us. Celebrate our strengths.  I will live in a world where disability enriches me life.  Never-ever diminishes it.

An idea I'm cultivating.  Which gives me energy through the fatigue.  For awhile, anyway :)