Glances and Dances

Hi Again! 

As some of you may know, we just completed the set up of Derek’s Vision for a “Dance It Out Challenge!” 

This entry was written while Derek was in the hospital and I was trying to find the strength to somehow make his vision a reality!

Check out Derek’s vision of a “Dance Challenge for ALS” at:

Facebook: @“The Dance It Out Challenge.”

Thank you for following our journey.

We have many moments in our home that involve longing stares. We all seem to be doing it a lot lately. Glancing at one another while no one is looking. Caught up in the beauty that fills our home. Stopped in our tracks admiring each other with wonder.

Derek is only 45. Daily this thought slips through my fingers as I watch his body change every single day. We all see you Derek. 

I remember when I first meet Derek 16 years ago. We spent hours talking about life and legacy, visualizing the parts of life that feel good. I knew he was special, but I always thought that he would have more time to create his legacy. I always thought that when I turned around from creating mine, that he would be there smiling.

Today, Derek is reliant on support from machines. Tubes and the loving and attentive care of home care aids is what allows him to be. I can no longer move him at all. It’s near impossible to embrace him because it hurts his thin body. 

When the heavy hits, we stare. Stopped and watching each other.  “Let’s Dance,” he says. It’s the one thing left that we still know how to do. But inside my heart sinks. I am so sad watching him fade.

I tell Derek that he’s a warrior. His visions are now my mission. And my goal is to make sure that I feel his passion. 

We all know that life is short and that we never know what is lying just around the bend. Our young children watch this.  Their big bright eyes begin to glaze over the details of living with this unforgivable disease. I see freedom in their young souls, and confinement in Derek’s. I see vibrant, longing life in the kids, and shy peace in Derek’s. 

I am just here sometimes. Fighting to support both the bright and dim that lives in my home. I just offer myself.

Today is a note to say thank you to all who have offered themselves to Derek and the kids. And  to me.

May your day rise up strong to meet you. And we hope to dance with you!