Wednesday, April 16, 2025 - Day 246

Wednesday, April 16, 2025

Good morning—and thank you. Thank you for making me smile this morning and lifting my spirit. I woke up to some photos dropped into my phone last night—just plain, simple fun. It was the kind of light I needed after yesterday.

On Monday, I received a tracking number from Team Gleason for the power wheelchair. It was scheduled to arrive on Wednesday, April 15. Perfect timing. Tax season would be behind me, the weather’s finally turning nice for outdoor time, and we’re heading up to Minocqua on Thursday for Easter weekend. Lis and Steve opened the main house early this year so we could celebrate. Maria flew in from Kyiv on Sunday for a couple of weeks of R&R, and my cousin Anne from Fond du Lac is joining us too—I haven’t seen her in a couple of years. I’m really looking forward to this small get-together.

The wheelchair would make it so much easier to get between the two homes on Fence Lake—assuming there’s no snow or mud to get stuck in. It’s still chilly in the Northwoods this time of year, although really, it’s always a little chilly up there. Last I checked, there’s still ice on the Lake, so no pier just yet. That’s a late May project. Even then, the water is so cold it could shrivel any unprotected manhood for the rest of the weekend. I swear, I’m not exaggerating.

The tracking details for the chair showed the delivery window between 10:00 and 1:00. Great news—I’d be home all day. If it arrived fully charged, maybe I could even take Bear for a walk. I imagined him looking behind him the whole time, totally confused by the new contraption following him. That mental image alone made me smile.

Starting at 10:00, I kept peeking out front to see if anyone was there with a big box. Silly, really—I’d have to sign for it anyway, but I couldn’t help myself. I went back and forth between double-checking the last tax return and wandering to the porch just to look. By 1:30, nothing. Not even our daily Amazon driver, who practically lives here.

I finally checked the tracking link. “Delivered at 12:30,” it said. Wait—what? Who signed for it? Where did it go? Then I saw the destination: a small town in Kansas. What? How? Where are my wheels?

I felt a wave of panic. I called my contact at Team Gleason and left a voicemail, then followed up with an email. The whole thing felt so off—I’ve never had a tracked package just disappear like that.

Frustrated and needing a distraction, I went upstairs to watch 1923. That show’s packed with enough drama to hold my attention and divert my thought. It mostly worked, but I still kept checking my phone, hoping for an update. Finally, a short email came in: “I sent you the wrong tracking number, I apologize. Here is the correct one.”

I’m thankful for a corrected tracking number, and then my mind goes to, “that’s it…that’s all you have to say? A.I. could show more compassion.”

Relief. I clicked the link—new ETA: Wednesday.

Fantastic! I could still bring it to Minocqua. This is still going to workout.

I went downstairs to tell Cindy, and as soon as I said the words, “The chair is coming Wednesday,” I started to cry. It just hit me. I sat down and let the tears fall—I couldn’t stop them. The excitement of the chair arriving, the sudden letdown, and then the relief—it all flooded out at once. I tried to talk, but no sound came out. My mouth moved, but nothing. I took a few deep breaths and finally managed to explain.

I told her, “I try to find the positive things in my day so I don’t have to think about how hard it is to live in a failing body. I rely on others so much more now, and when promises fall through, it chips away at me. I’ve had so many positive experiences with ALS care providers, but one ‘oh shit’ moment can erase 99 ‘attaboys.’ That’s something I learned in supply chain—those moments stick.”

So yeah, the emotion came from the wheelchair mix-up, the delay with the cough-assist (still not here, and we started that process in late February), and the distraction tax season. It’s all piling up. I’m doing my best to stay hopeful, but I worry about what’s next. How do I keep distracted to stay positive?

Cindy helped ground me, reminding me how important it is to work on my voice and message banking—something I’ll need as my speech declines. That gave me a sense of direction again. When we get back from Minocqua, that’s where I’ll focus my energy.

So the old photos and the new one from the Sew Hop’d Instagram site, that were sent last night, made me smile early this morning. Good timing. Thanks!

Have a great day.

Love you guys!❤️