Wednesday, August 13, 2025 – Day 365

Wednesday, August 13, 2025

Good morning, everybody.

The Anniversary Well… here I am. One year ago today, I heard those words that still ring in my ears: “I think you have ALS.”

The Diagnosis In my head, the thoughts came rapid-fire: What?! You think I have ALS?! That can’t be right. I’m healthy. I’m active. This isn’t happening. Why me? You’ve made a mistake! Crap. Seriously. How did this happen? What’s next? How do I tell the kids? How do I tell anyone? How much time do I have? I need a second opinion…NOW!.

Why Me A year later, I still relive that moment. Truth is, I relive it most days. And I still wonder, Why me? But I know I’m not alone—there are over 30,000 people in the U.S. with ALS, and I’m sure every single one of them has asked the same question. The hard truth? There’s no answer. Sometimes life hands out lottery wins. Sometimes it hands out incurable diseases. It’s the luck…or bad luck…of the draw.

The Tell We didn’t tell many people at first. Immediate family knew, and then a few cousins on my mom’s side because an aunt had ALS. But mostly, we kept it close. Dropping this kind of news on someone felt impossible. It took months to let the news ripple out. Some people never got a phone call—not because they didn’t matter, but because saying the words out loud hurt too much.

Keeping it Close We kept it off social media for a long time. I didn’t want to be swamped with questions or pity. And honestly—who would want to read about ALS? People want happy news, not a front-row seat to something so heavy. I still haven’t put it on Facebook. Part of me thinks about doing it, just to let old friends know. Then I think… not today. And maybe it will always be not today.

The Blog I underestimated you all. When I finally started this blog in February—after months of friends cajoling me to share my daily updates more widely—the response was overwhelming. I don’t know how many people I reach (there’s no counter), but if 150+ showed up for the May 31 party at Illinois Beach State Park, it’s more than I ever expected. Not only did you want to read about our journey—you wanted to help, in every way you could. The kindness, the love, the generosity… it still amazes me. And it hasn’t stopped. Every day, it finds its way to us.

Raising Money The kids are raising money for ALS through the Chicago Marathon under the ALS United banner. If you’d like to support them, the link is in the top right corner of the blog page.

New Friends We’re making new friends along this road—through the ALS clinic, ALS United, and from people who’ve joined our journey and found meaning in it. That part is especially touching to me. There’s more to come here, I’m sure.

The Journey Instead of shutting down, I’ve opened up. I’ve tried to bring you into our world as we’re living it—sharing my frustrations, sadness, happiness, fears, and laughter as they happen. Writing this blog has been my “group therapy,” without the sticker-shock invoice. (Although the social worker at the ALS Clinic might be feeling left out.)

The Wedding From day one, my focus was on one thing: making it to Alex and Nicole’s wedding on September 13, 2025. I wanted to be there—standing, walking, talking. I didn’t want my presence to be a distraction from their day. I just wanted to blend into the background and watch them begin their life together. And now, I’m close enough to believe that’s exactly how it will be.

What’s Next After the wedding, it’s on to new goals—we’re already working on them. Keep living. Keep enjoying. ALS ended life as I knew it, but it also opened my eyes—and my heart—to a new way of living. And that’s because of you. Thank you feels too small, but I say it anyway—every day. You bring us sunshine, and we’re warmed by it constantly.

The comment I heard from my colleague at Tax-Aide still motivates me. “Andy, you still have a brain.” It stuck. I’m still here…still moving forward (even if it’s not always in a straight line). Tomorrow? I’ll take it as it comes… one wobble, one laugh, one good hug at a time.

Have a great Wednesday.
Love you guys! ❤️