Tuesday, October 28, 2025 – Day 441

Tuesday, October 28, 2025

Good morning, friends and family.

This ALS progression is really starting to hit hard. No matter what I do, I come out of every activity needing a break. It can be something as simple as brushing my teeth and getting dressed in the morning. Moving from one room to another seems to suck up all the oxygen in the house, and I end up winded, sitting there trying to catch my breath. I’m beginning to think it might be time to bring one of the power wheelchairs into the house. That would certainly make things easier—but will my legs deteriorate even faster if I do? Or maybe… just maybe… I’m just having a couple of “down days.” I guess I’ll know soon enough.

We were invited—by Zack’s parents—to return to St. Maarten with the kids, leaving on Thanksgiving. We did the same trip last year, and it was wonderful: ten days of sunshine, beaches, family time, and grandkid giggles. In Coco’s case it’s a little different. Still, it doesn’t get much better than that. Just thinking about it sounds like the perfect escape.

Of course, the heart says, “Go.” The meaningful memories we’d create make it feel like a no-brainer. But then the reality of ALS creeps in. What used to sound relaxing now feels daunting. I know everyone would go above and beyond to help me navigate the obstacles, but the physical and mental toll of losing more independence weighs heavily. Every time I debate this trip, I come back to the same conclusion: it’s too risky. I don’t like saying no—but as I sit here, thinking honestly about my capabilities, I know it’s the right call.

We also got an invite from Maria and Pete to spend Thanksgiving in Minocqua. Same situation… except not quite as warm. And as much as I’d love to be up north, Alex and Nicole can’t make it this year—and I really want to spend the holiday with them.

So, I’m staying close to home this Thanksgiving. We’ve put a lot of effort into making our house ADA-friendly, and I can’t deny how much safer, more comfortable, and more private it feels here.

Thank you, everyone, for the invitations and for always being so willing to accommodate my situation. I hope it makes sense why I’m choosing to stay back this year….its not what I want to do.

Have a great Tuesday. Love you guys! ❤️

Photos:

The end of a two week vacation. They brought us along by sending daily photos. It’s been a fun trip…thanks for including us. Felt like we were a part of it.