Wednesday, September 17, 2025
Wednesday, September 17, 2025 – Day 400 Good morning everyone.
Well…here we are: 400 days since the ALS diagnosis. What a ride it has been. I’ve had far more highs than lows, and the progression has been slow enough that this shitty disease didn’t dampen Alex and Nicole’s wedding—as you’ve seen this past week. Still, there’s no ignoring the toll: I’ve lost 40 pounds (about a pound every 10 days, or three per month), and walking—even with the walker—has become increasingly difficult. One step at a time is all I’ve got left there. Thankfully, my two power wheelchairs are waiting in the garage to keep some independence when the time comes. I won’t predict when that day will arrive—it’ll feel too soon no matter when it does.
Now, back to finishing the wedding story. The ceremony wrapped up and everyone moved to the patio for the cocktail reception. The weather was perfect, the mountains stretched out in panoramic views, and happiness was in the air—exactly what a wedding day should feel like.
We had a lot of Snarskis there, though a few couldn’t make it. We missed you! Someone smartly suggested a group photo, which took about ten minutes to wrangle. Picture this: standing on a grassy incline, me hanging onto whoever was nearest for balance, while four-year-old Wyatt decided the perfect pose was doing his plank routine in the front row. I loved it—and I hope the photographer captured that smile-worthy moment.
After an hour outside, we headed in for dinner and the wedding party introductions. The toasts began with Nicole’s parents, who spoke warmly about the resort and their family memories skiing there—their vacation home is just 20 minutes away. Nicole’s dad shared the story of Alex calling to ask permission for her hand, which was touching. (Kudos, Alex—you nailed that one.) Then her sister Emily spoke about their close bond. I missed most of it as the DJ was hustling me into position for my own toast.
I was nervous. I’d practiced countless times, but different memories always stopped me in my tracks. I didn’t write the speech to be a tearjerker, but reflecting on family, welcoming Nicole, and knowing in the back of my mind how short my own timeline might be—it all stirred emotions.
Cindy insists I did great, and I’m grateful to have gotten through it. There were long pauses where I’m sure people held their breath, hoping I could continue. Sometimes I opened my mouth and no sound came out, forcing me to restart a sentence. What should’ve been a 7-minute toast stretched past 12. But I finished. And when I finally raised my glass, I felt both relief and gratitude.
Alex came over, followed by Nicole, and the three of us shared a hug and a few tears of happiness.
Then it was time to celebrate: dinner, dessert, first dances, and a packed dance floor. The playlist was solid—plenty of Taylor Swift, surprisingly little rap (maybe a strategic choice to keep the over-60 crowd out there).
At one point I grew tired of just watching and asked Cindy to dance. She thought I was joking, but I was serious. With a little help, I got onto the floor and we slow danced to A Thousand Years. That intimate moment made the night complete.
Here is a link if you’d like to see it.
Thanks, Barb, for capturing it.
I even made it back out for a couple more songs before calling it a night. I still had a few moves left in me…and I had spotters surrounding me if I got a little too creative in my moves.
What a wedding. What a weekend. What a memory.
Thanks for sticking with the recap. Have a wonderful Wednesday.
Love you guys! ❤️
p.s. I did finish Neon Prey yesterday and I’m waiting for the next one to show up…maybe today?
