Good morning, everyone.â¨8 days until Christmas! đ (got the math right today)
My sister Maria and her husband Pete stopped by yesterday on their way back from Florida to Minocqua. Somehow, I had it in my head that they were simply driving through the Chicago area. Why else would you stop in Crystal Lake, right?
They arrived right at 2:00 p.m., loaded down with packagesâincluding dinner. I mistakenly thought I heard Jordaniancuisine, but it turned out to be Georgian food⌠a pretty big difference.
Good morning, everyone.â¨11 days until Christmas. đ
Surgery is scheduled for this Friday to replace my feeding tube. It turns out these tubes have a useful life of about six months. Iâm right at the edge of that window, which explains why it keeps failing. I just wish the GI specialists had given us a heads-upâwe could have replaced it sooner and avoided doing this right before the holidays.
Good morning, everyone.
Happy 67th Birthday, Ric! đĽłđđŻđž
This morning got off to a rough start. Had Cindy not gently nudged me awake, I might have slept right through my self-imposed publishing deadline. Yikes.
Yesterday, I finished Cry Havoc. Itâs a thriller set in Vietnam around the Tet Offensiveâwhen the course of the war shifted decisively in favor of the North Vietnamese (not that the U.S. ever truly stood a chance of winning).
Good morning, everyone.â¨11 days until Christmas. đ
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 basementâŚwhere everything eventually ends up. Iâm honestly surprised there was room, although I have no idea what the basement hoarderâs den looks like anymore. I havenât been down there in nearly a year. No matter.
Good morning, everyone.â¨12 days until Christmas. đ
If youâve 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 Iâd like to admit. Like yesterdayâwhen I was convinced it was Friday the 13th.â¨Wrong!!
So anyway⌠please pay no attention to that man behind the curtain. I also try to recognize birthdays here on the blog, and thatâs a little hit-or-miss as well.
Good morning, everyone.â¨12 days until Christmas đ
Yesterday, the cleanup continued from Tuesday nightâs formula debacle. We have a large rug in our bedroom that once lived in my parentsâ living room at 1922. Our bedroom was the only place it fit in our townhomeâand 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.
Good morning, everyone.â¨14 days until Christmas! đ
Last nightâs sleep worked out perfectly. We went to bed a little anxious after the recent feeding-tube âleakingâ eventâthe one that left formula soaking the rug, the floor, and the HVAC system. Honestly, we shouldâve called a disaster-recovery team. That stuff dries stickier than Elmerâs glue.
This time, though, the pump didnât finish early. We adjusted the rate downward, and by 4:00 a.
Good morning, everyone. Todayâs 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 tasksâjobs she wouldâve had to tackle later herself. That alone was a gift.
Good morning, everyone. 16 days until Christmas. đ
Itâs been a week since I started the overnight pump feedings, and so far my body is tolerating it surprisingly well. Iâm essentially doing the equivalent of two feedings while I sleep, with a third one midday. Itâs much easier to stay compliant with my required nutrition this way instead of trying to carve out three separate times every day. HeckâŚI never ate three times a day even before ALSâŚI was a lifelong lunch-skipper.
Good morning, everyone.â¨17 days until Christmas. đ
Yesterday was a tale of two halvesâŚproductive 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 printerâŚmy clever workaround.
Good morning, everyone.
Today marks 84 years since the attack on Pearl Harbor, âa date which will live in infamy.â 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 ânormalâ has mattered to me. One untouched room felt like a small victoryâŚa way to slow the march of ALS inside our home.
Good morning, everyone.
Letâs talk red.
We had so many holiday traditions over the years../some new, some old, and some fleetingâŚbut 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 wasnât just âa little moreâ chaosâŚit was exponential chaos.
Good morning, everyone.
My neck has been giving me more and more trouble lately. Iâve tried PT, Iâve tried various neck braces, posture devices, pain-relief gels, TylenolâŚbasically, if Amazon sells it, Iâve probably ordered it. Nothing has brought real relief, and little by little Iâve found myself folding forward. At this point, when I walk, all I can see is the floor. If I want to know where Iâm 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.
Good morning, everyone.
Letâs not talk about ALS, letâs talk about stockingsâŚnot 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 clothespinâŚone at a time, from oldest to youngest.
Good morning, everyone!
Yesterday someone asked for more stories. Iâm going to try my best to honor that request, but Iâll need to plan ahead a bit. Itâs tough to wake up, shake off the cobwebs, and get the creative juices flowing at 5:00 a.m. Most of these blogsâŚaside from the house fire storyâŚhave 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.
Good morning, everyone.â¨23 days until Christmas. đ
I had my second massage yesterday, and I have to sayâI 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 19â for the whole 24â25 season. This year weâre already pushing 12â, and itâs barely December. I canât even imagine trying to navigate a rollator over snowbanks and icy sidewalks.
Good morning, everyone.â¨24 days until Christmas. đ¤ś
We finally had our Thanksgiving feast yesterday. This holiday has always been one of my favorites. Iâve always loved the mealâŚitâs the only time each year we have turkey, and when you add my favorite sidesâmashed potatoes, sausage-loaded dressing, rich gravy, and a vegetable (preferably corn)âitâs a win-win. OhâŚand we did have a kale salad. Iâm sure it was good.
I skipped my formula feeding so I could join everyone at the table in the feast.
Good morning, everyone.
Last day of November and weâre 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 anyoneâs 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.
Good morning, everyone.
Today is our Thanksgiving celebration. We pushed it to the weekend to make sure the kids could join us, and Iâm glad we did, I think.The only hitch? Weâre expecting a good amount of snowâŚwhich means if I canât safely get out to the grill, then Cindy will be flying solo getting the turkey underway. And this isnât just any turkey⌠itâs a nearly 24-pounder. Thatâs seriously over the top.
Good morning, everyone.
We had our non-Thanksgiving meal yesterday with Barb, Mark, Donna, and Joe. Honestly, it felt more like EasterâŚham, 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.