Friday, December 13, 2025 – Day 486

Friday, December 12, 2025

Good morning, everyone.
12 days until Christmas 🎄

Yesterday, the cleanup continued from Tuesday night’s formula debacle. We have a large rug in our bedroom that once lived in my parents’ living room at 1922. Our bedroom was the only place it fit in our townhome—and we figured it would be safe from spills and food. Well… until now.

I had a nagging feeling that something was eventually going to go sideways with the feeding pump in our bedroom. Hanging a one-liter bag of what looks like chocolate milk over the bed felt about as reliable as a McDonald’s soft-serve ice cream machine. It wasn’t a matter of if it would fail, but when. The fact that it survived the first week lulled me into a false sense of security—and I got a little too relaxed.

The white fringe had turned into a stiff, chocolate-colored mess, with formula still embedded deep in the fibers.

Cindy called Barb, and the two of them spent a few hours washing, rinsing, and carefully combing the fringe over and over until every last bit of that sticky mess was gone. When they finished, the rug looked great, and the fringe was back to its beautiful, flowing white strands. I don’t think professional cleaners could have done a better job. Thanks, Barb!

Now we just have to be prepared for this to happen again. Last night it weighed on me, and I woke up often to check that the tubes were still connected. I never want to wake up to a pool of formula next to the bed again. Part of me wants to put down a painting tarp—although that would probably just trip me and create a whole new set of problems.

So here we are—Day 486 since my ALS diagnosis. The first year of living with ALS symptoms was relatively manageable for both Cindy and me. Don’t get me wrong—there’s no part of this shitty disease that I like. But early on, it was mostly about adapting and working through new challenges.

Now I’m at a point where I need help. I can still do many things independently, but there are moments when I simply get stuck and it’s very risky for me to keep going.

And when I get “stuck,” Cindy is the one who steps in. That formula spill happened on a night when she’d had very little sleep. I wasn’t there when she cleaned it up the next morning, but I know how exhausting moments like that can be.

Cindy has spent much of her life caring for others, including 35 years helping her mom, and she carries this role, once again, with quiet patience and steadiness.

The best thing I can do is be mindful of my limits and careful in my choices. When I do that, it gives Cindy one less thing to worry about—and that matters.

So when she runs errands or spends time with friends, I want her to know I’m safe at home. That peace of mind is important for both of us. It’s a small thing, but it’s one way I can take care of the person who takes such good care of me.

Neither of us signed up for ALS, but it’s where we are. My job now is to make things as easy as possible so Cindy can recharge when she needs to. So give her a call. Invite her out for breakfast, lunch, or a glass (or two) of wine. I promise I’ll be safe while she’s away so she can truly enjoy the break.

Have a great Friday. Dress warm this weekend—it’s going to be frigid. Love you guys! ❤️

Photos

Barb stayed on and helped put up some lights to add some sparkle to our home. Thanks Barb! I love it.🥰