Sunday, March 30, 2025 - Day 229

Sunday, March 30, 2025

Good morning!!

Yesterday was a full one (not that it takes much for me these days)—keeping up with the kids while Brandon, our trusty carpenter, spent the day installing the new handrails on the staircase.

Back in late October, after our first ALS clinic visit, we did a video tour of our home with Peggy, the care coordinator from ALS United—our angel for all things ALS. During the tour, we had to go upstairs. As I climbed, phone in hand, not bothering with the banister, Peggy gently suggested I be careful. Naturally, I waved her off, assuring her I was fine. Some habits die hard—if you recall, I was written up at Mosaic for the same thing once before. What can I say? Old habits and a little defiance keep life interesting.

Fast-forward five months, and we needed handrails—a single banister wasn’t going to cut it anymore. We’d been talking about installing them for the last month, and as of yesterday, they’re finally up. Let me tell you—they are a game changer. Climbing stairs now requires both arms to assist because the legs just can’t do it alone anymore. But with the handrails, it felt like I’d turned back the clock a couple of months to when stairs weren’t such a battle. If something makes life easier, I’m all in.

Now, coming down—that was a daily adventure. With only one banister, I had to side-step, gripping it like my life depended on it (because, well, it kind of did). Every morning was a real-life game of Will My Fingers Hold?

Today, I wrapped both hands around the new rails and took my first step down, using my arms to take the load off my legs. The wood creaked under the strain—six brackets on each side, all screwed into the studs—but for a split second, I still had that irrational thought: What if all the screws pull out at once? Of course, that’s ridiculous. I couldn’t yank those screws out if I tried. As I made my way down, listening to the slight strain (in the wood, not me), I thought, at least it’s solid oak holding me up and not pine.

I don’t know what the next step will be (no pun intended) when I can still walk but not climb stairs. A stair lift? Eventually a wheelchair lift…but just not yet. Time and the disease’s progression will decide for me. My goal is to stay independent as long as possible and not put anything more on Cindy’s plate before it’s absolutely necessary. She’s handling so much already, and I know it wears her out. Heck, I wear myself out, and I’m not even doing that much.

Saturday was all about Wyatt—because keeping an almost-four-year-old entertained is no small feat. Cindy invited Barb to join in the fun because, when it comes to toddlers, more adults mean better odds of survival.

The day started at the park district’s nature center, followed by a stop at Marvin’s Toy Store, where Wyatt picked out a dinosaur dig kit. Lunch at Georgio’s quickly turned into an excavation site, with Wyatt hammering away at his clay-encased T-Rex fossil. I even took a time-lapse video of his relentless effort. If you ever find yourself at the six-person high top in the bar, you might spot some lingering evidence of his work on the table—our little mark on history.

After all that action, we headed home. Wyatt settled in for some TV time, and I happily got off my feet. It was the perfect way to spend the afternoon—simple, low-key, and full of the kind of moments that really matter. I love that Wyatt and Nicole want to fly out and spend quiet, maybe even boring weekends with us. That, to me, is everything

Get all your necessary tasks completed, because next weekend is four days of golf. The Masters starts this Thursday. Yes, I know some of you think golf is boring, but this is the tournament to watch if you could only choose one. Maybe I’ll get back for one more visit.🤞

Have a great Sunday.

Love you guys! ❤️