Wednesday, May 28, 2025 – Day 288

Wednesday, May 28, 2025


Good morning!

I have no idea who reads this blog or how many people tune in each day—and that’s by design. I never wanted to chase view counts. I just wanted a place to share this journey—our ALS journey—with family, friends, and curious onlookers who might be walking their own path or simply want to understand ours a little better.

Going back to May 20, when we appeared on Season’s Sunflower Hour—me, Cindy, Nicole, and Alex. As the show kicked off we saw everyone checking. Around 75 people tuned in live, and their messages lit up the screen. Message after message, pouring in, cheering us on, lifting us up. I couldn’t hold back the tears—and even now, replaying that moment in my head gets me choked up. I wasn’t ready for that kind of emotional wave, but today I can smile at it. It was beautiful.

The rest of the show? A bit of a blur. Good thing Cindy stayed composed through the opening, or they might’ve cut our mic. The kids? They absolutely crushed it.

Why bring this up today? I peeked at the current view count—it’s approaching 700! Where are all these views coming from?! Who’s juicing the numbers? Whoever you are—thank you. Thank you for watching, and thank you for showing up here to read this blog…one day at a time.

I think we may try to add a permanent link to the show on the blog. Geoff, if you’re reading this, I’m looking in your direction. 😉

In the meantime, here’s the link again:
www.youtube.com/live/KWi-…

Now let’s talk AFOs. Yesterday’s appointment was…frustrating. The orthotist and I had a tough time communicating—English wasn’t their first language—but we worked through it. After trying a couple different sizes, we found one that seemed to work. The whole process took me back to my childhood: getting new shoes with my brothers.

Picture this—five boys (including triplets), piled into the station wagon with my mom (Sally), headed to the Sears in downtown Waukegan. That alone sounds like a survival challenge. Once we hit the shoe department, we’d fight over the foot-measuring gizmo, then chase each other around until we were “gently” reminded to behave. Well, maybe not so gently—the infamous “Sally pinch” could stop you in your tracks and bring a tear to your eye. It was a successful outing if we all made it home with new shoes—and a miracle if no one bled.

Anyway, back to modern-day footgear. Once we found a good fit, the orthotist trimmed the AFO to sit perfectly in my shoe. I walked the hallway to test it out—felt a little odd, but not bad. Then I sat down, ready to head home with it…only to hear, “Please take it off.”

Huh?

Turns out they need approval from my neurologist and then from Medicare before I can take it home. I asked how long—maybe a couple of weeks. I’m confused, because getting the AFO for my right foot was simple. This one? Bureaucracy strikes again.

So we left empty-handed, and now I wait. I’ll keep checking in to make sure it doesn’t fall into some black hole.

We returned home mid-morning, but it was too chilly to hang outside. Barb came over to help with a final push on the Andy’s Army bracelets, and I decided to read—despite having a list of other things that probably should’ve come first. I’ll tackle those today… maybe.

To my anonymous book fairy: I finished Night Prey (book #6)! One more thing checked off the list. Mind Prey (book #7) is already on the nightstand. Thank you.,Not sure when I’ll crack it open, but it’s calling to me.

Today’s photo is of sweet Wyatt (grandson), practicing the Pledge of Allegiance for his big moment leading his preschool class. Hard to believe he turns 4 this Saturday—you crushed it.

Have a great Wednesday.

Love you guys!❤️