Waves and Days

The waves arrive, one after another. Crashing or smashing or just rolling smooth and gentle. They wash up and back to sea. One like another.

So are my days. One after another. So that I look up and wonder how times moves so quickly. In the space of days, we traveled to the San Diego area. We played on the seashore. I sewed fairies and mermaids with new friends. We returned home to rain. Then heat.

And each day I plan to write. But I struggle. What, me? Struggle with words? Yes. Or, more precisely, I struggle with the story.

I've seen others write about a Highlight Reel and Behind the Scenes. The highlight reel is what we love to share.

Yesterday we made strawberry-yogurt popsicles. With strawberries that the children picked at our farm-share.

They were delicious!

It's true. A great highlight of the day.

Behind the scenes, I struggled with a new flare up. Exercises that are meant to build strength may be causing challenges. I say may be since the trigger could also be heat. I hit walls when it gets too hot for me. A new thing where I shut down until I get in cooler temperatures. Where is that coming from? Ack!

Tricky stuff, balancing the good stuff and the challenging moments...

So I return to my mission here. I do not need to be the prettiest or the fanciest. I do not need to be the rock star mom. I just need to tell our story. The authentic stuff. Wonderful and challenging. Because this journey matters.

One day, CMT will be cured (I believe). And, one day, this lifestyle will be over. People won't look strong while managing deep muscle-weakness. Joints won't ache because they are used incorrectly. Tendons won't be too-tight or too-loose. Nerves won't fizzle like firework-sparklers under the skin after a busy day. CMT will be history. Like so many other diseases that we have unraveled and conquered. I look forward to that day.

But I don't see it soon. Lots of people are working hard. But I've heard that a cure was 5-10 years off for awhile. Since the 1980s awhile. So I hope. But I keep living too :)

As best I can.

I have a tech-fatigue right now, too. Like a mermaid, I am deep underwater. Words are elusive at times. I am recharging in a big way- days and weeks of recharging. The stories don't come easy. Thinking about photos or posts just tires me instead of motivating me. I honor those inner tides (as best I can). The prolific writing will return. For now, after a busy school year, with two young children, and Forest Fairy Crafts, I am tired. Crawling into bed, under cozy blankets, into the quiet dark tired.

And that's okay. I'll do my best. I have ideas. Of course. Lots of ideas. And I'll post as often as possible. The highlight reel and the behind the scenes. Both versions are important :)

Today I get to visit a new place in search of better leg braces. I wonder what they will say, when they hear my story. I hope they have ideas to help. Though I can't wear sandals with braces, so what would I wear with skirts in the summer? I can't let vanity affect my overall health though :) Lots of questions...

I am holding these waters.

Calm and serene. Lovely blue. Moving every day towards the shore.