Sunday, December 14, 2025
Good morning, everyone. 11 days until Christmas. 🎄 Yesterday, Cindy cleared out the furniture from the main floor that would hinder the wheelchair, with some much-needed muscle from Mike H. Where did it all go? The basement…where everything eventually ends up. I’m honestly surprised there was room, although I have no idea what the basement hoarder’s den looks like anymore. I haven’t been down there in nearly a year. No matter.
Saturday, December 13, 2025
Good morning, everyone. 12 days until Christmas. 🎄 If you’ve been paying close attention to the details of my blog, you may have noticed that I sometimes mix up days of the week and dates… more than I’d like to admit. Like yesterday—when I was convinced it was Friday the 13th. Wrong!! So anyway… please pay no attention to that man behind the curtain. I also try to recognize birthdays here on the blog, and that’s a little hit-or-miss as well.
Friday, December 12, 2025
Good morning, everyone. 12 days until Christmas 🎄 Yesterday, the cleanup continued from Tuesday night’s formula debacle. We have a large rug in our bedroom that once lived in my parents’ living room at 1922. Our bedroom was the only place it fit in our townhome—and we figured it would be safe from spills and food. Well… until now. I had a nagging feeling that something was eventually going to go sideways with the feeding pump in our bedroom.
Thursday, December 11, 2025
Good morning, everyone. 14 days until Christmas! 🎄 Last night’s sleep worked out perfectly. We went to bed a little anxious after the recent feeding-tube “leaking” event—the one that left formula soaking the rug, the floor, and the HVAC system. Honestly, we should’ve called a disaster-recovery team. That stuff dries stickier than Elmer’s glue. This time, though, the pump didn’t finish early. We adjusted the rate downward, and by 4:00 a.
Wednesday, December 10, 2025
Good morning, everyone. Today’s post is about gratitude… and a gaffe. Yesterday, my triplet brothers, Tom and Tim, stopped by for a visit. As luck would have it, they arrived at the exact same time as Stephanie, my PT. My brothers were looking for things to do, so Cindy put them to work on a handful of small tasks—jobs she would’ve had to tackle later herself. That alone was a gift.
Tuesday, December 9, 2025
Good morning, everyone. 16 days until Christmas. 🎄 It’s been a week since I started the overnight pump feedings, and so far my body is tolerating it surprisingly well. I’m essentially doing the equivalent of two feedings while I sleep, with a third one midday. It’s much easier to stay compliant with my required nutrition this way instead of trying to carve out three separate times every day. Heck…I never ate three times a day even before ALS…I was a lifelong lunch-skipper.
Monday, December 8, 2025
Good morning, everyone. 17 days until Christmas. 🎄 Yesterday was a tale of two halves…productive in the morning and puddles in the afternoon. Late morning we had a full-blown Christmas-card brigade assembled: Cindy, Barb, Mark, Geoff, and Kristin all gathered around the table pens and envelops in hand For as long as I can remember, Christmas cards have been my job. Being left-handed, I always avoided smearing ink by running the envelopes through the printer…my clever workaround.
Sunday, December 7, 2025
Good morning, everyone. Today marks 84 years since the attack on Pearl Harbor, “a date which will live in infamy.” We owe the men and women of this era so very much. Thank you for your service. The downstairs powder room has always been the one space I resisted modifying. Maybe that sounds silly, but holding on to something “normal” has mattered to me. One untouched room felt like a small victory…a way to slow the march of ALS inside our home.
Saturday, December 6, 2025
Good morning, everyone. Let’s talk red. We had so many holiday traditions over the years../some new, some old, and some fleeting…but what mattered most was that we celebrated them together. For so many years, Christmas at 1922 was the anchor. The siblings who lived outside the Chicago area would pack up their families and stay nearly a week. Going from a household of 10 to an extended family of almost 30 wasn’t just “a little more” chaos…it was exponential chaos.
Friday, December 5, 2025
Good morning, everyone. My neck has been giving me more and more trouble lately. I’ve tried PT, I’ve tried various neck braces, posture devices, pain-relief gels, Tylenol…basically, if Amazon sells it, I’ve probably ordered it. Nothing has brought real relief, and little by little I’ve found myself folding forward. At this point, when I walk, all I can see is the floor. If I want to know where I’m actually headed, I have to peek over the top of my glasses… and only for a second or two before gravity pulls my big fat head right back down.
Thursday, December 4, 2025
Good morning, everyone. Let’s not talk about ALS, let’s talk about stockings…not just any stockings, but Christmas stockings. Growing up, my mom, whom I called Sally, hand-knitted every stocking that hung by our fireplace. They were all identical except for the name stitched across the top, and to us, they were perfect. As kids, we had a Christmas Eve ritual. Each child would hang their stocking on the line using a clothespin…one at a time, from oldest to youngest.
Wednesday, December 3, 2025
Good morning, everyone! Yesterday someone asked for more stories. I’m going to try my best to honor that request, but I’ll need to plan ahead a bit. It’s tough to wake up, shake off the cobwebs, and get the creative juices flowing at 5:00 a.m. Most of these blogs…aside from the house fire story…have been written right here in the quiet solitude of my mornings. Before I dive back into storytelling, let me catch you up on my ALS journey.
Tuesday, December 2, 2025
Good morning, everyone. 23 days until Christmas. 🎄 I had my second massage yesterday, and I have to say—I really like having someone come to the house. It makes the whole process easier on me, especially now that winter has settled in. Last year was such a fluke for snow. We only had about 19” for the whole 24–25 season. This year we’re already pushing 12”, and it’s barely December. I can’t even imagine trying to navigate a rollator over snowbanks and icy sidewalks.
Monday, December 1, 2025
Good morning, everyone. 24 days until Christmas. 🤶 We finally had our Thanksgiving feast yesterday. This holiday has always been one of my favorites. I’ve always loved the meal…it’s the only time each year we have turkey, and when you add my favorite sides—mashed potatoes, sausage-loaded dressing, rich gravy, and a vegetable (preferably corn)—it’s a win-win. Oh…and we did have a kale salad. I’m sure it was good. I skipped my formula feeding so I could join everyone at the table in the feast.
Sunday, November 30, 2025
Good morning, everyone. Last day of November and we’re finally sneaking Thanksgiving in today. We skipped the actual day and had planned to celebrate yesterday, but Mother Nature decided to drop nearly a foot of snow. Rather than risking anyone’s safety, we postponed the gathering to today and everyone can still make it. The turkey is done, which is one less thing for Cindy to juggle. She opted for the oven this year instead of smoking it.
Saturday, November 29, 2025
Good morning, everyone. Today is our Thanksgiving celebration. We pushed it to the weekend to make sure the kids could join us, and I’m glad we did, I think.The only hitch? We’re expecting a good amount of snow…which means if I can’t safely get out to the grill, then Cindy will be flying solo getting the turkey underway. And this isn’t just any turkey… it’s a nearly 24-pounder. That’s seriously over the top.
Friday, November 28, 2025
Good morning, everyone. We had our non-Thanksgiving meal yesterday with Barb, Mark, Donna, and Joe. Honestly, it felt more like Easter…ham, potatoes, asparagus, the whole springtime lineup. The turkey is making its grand entrance tomorrow. All of this meal-shuffling was simply to make sure the kids could join us… or at least the ones still within driving distance. I am so thankful for all people who think of us and our situation every single day.
Thursday, November 27, 2025
Good morning, everyone. Happy Thanksgiving! 🦃🍽 Safe travels to all of you hitting the road today. Thanksgiving has always been one of my favorite holidays. Yes, it’s a day of pure gluttony, but for me the joy has always been in the traditions…the familiar dishes, the smells that drift through the house, and the people gathered around the table. And for the record, when I say “variety of dishes,” I’m not talking dinnerware… although that was definitely Sally’s thing.
Thursday, November 27, 2025
Good morning, everyone. Happy Thanksgiving! 🦃🍽 Safe travels to all of you hitting the road today. Thanksgiving has always been one of my favorite holidays. Yes, it’s a day of pure gluttony, but for me the joy has always been in the traditions…the familiar dishes, the smells that drift through the house, and the people gathered around the table. And for the record, when I say “variety of dishes,” I’m not talking dinnerware… although that was definitely Sally’s thing.
Wednesday, November 26, 2025
Good morning, everyone. Looking ahead at the weather, it shows snow barreling toward Crystal Lake with temps that will feel below zero. Suddenly, saying “no” to St. Maarten feels like a mistake. Brrrrrr. 🥶❄️ A follow-up to the house fire story from yesterday… When I was 5 or 6, still living at 316 Keith, I took a book of matches up to my bedroom. I was fascinated by fire even then — the warmth, the glow, the way a flame dances.