Tuesday, February 17, 2026 – Day 543

Tuesday, February 17, 2026

Good morning, everyone.

Yesterday was a recovery day.

Sunday night really sucked the energy out of me. By Monday morning I was running on fumes — physically and mentally. It’s amazing how quickly the tank can empty.

I tried to refill it the best way I know how: an early formula feed and a nap by the fireplace. It helped… but I was still in a serious energy deficit. I ended up in bed in the early afternoon and hooked up to the pump for a feeding. The beauty of the pump feedings is being able to sleep through them. And followed by a good book.📕

Cindy handled every transfer yesterday. No shortcuts. No pushing it. Just careful, deliberate movement from chair to stair lift to bed to bathroom and back again.

I’m still cautious this morning. We have ALS clinic on Thursday, and that’s a marathon day. I want to show up with as much strength as I can gather.

We had planned a small Fat Tuesday gathering today — something colorful and lighthearted to break up the ALS routine. Mardi Gras beads are still draped across the table. Masks and hats waiting for a party that won’t happen. Canceling hurt. Not because of the decorations, but because it was our attempt to say, “We’re still here. We still celebrate.”

The good news: we adjusted the ventilator settings back to where they need to be. That made all the difference overnight. When breathing feels uncertain, nothing else matters. Plans, pride, independence — all of it fades into the background. Air becomes everything. Last night was calmer. No panic surges. Just steady breaths. That felt like a gift.

Right now, I’m noticing changes that are harder to ignore. Transfers are getting more unpredictable. If I lose the ability to move independently from chair to bed or chair to toilet, that’s not a small adjustment — that’s a major shift in how we live. Cindy can do so much, but she can’t do everything alone.

That reality brings conversations about caregivers and further home modifications a little closer to the front of the mind.

So for now, I’ll lay low. I’ll move slowly. I’ll listen when my body whispers instead of waiting until it shouts. I’ve ignored those whispers before. Sometimes I got away with it. Sometimes I didn’t.

Today is about conservation. Quiet mind, patient body, and energy savings. One careful step at a time.

Have a great Fat Tuesday.

Love you guys!❤️