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A New Chapter
The last time I wrote in this blog, I was married to the love of my life.
Now, I am a widow.
I still wear a ring, but he doesn’t.
My life is a new marriage of sorts. I must weave the before with the after. I sit at his desk, in what was previously his office, dividing my time between reconciling the past and preparing for the future. Simultaneously I must settle his affairs while making sure my own are ready for future days. I spend a little bit of time every day working through legal documents, finagling various types of insurance, and preparing for taxes. I am the chief cook and bottle washer now.
This blog will probably have a haphazard appearance (not that it was very ordered before, TBH), as I strive to cover a varied terrain.
I will write about the last vacation we took before we knew he was sick and talk about my own solo travels. As I write this, I have just arrived from a one week beach vacation where I mourned and healed. In fact, I have several trips coming up this year. Last year we had but one: our last Vegas adventure. I’ll have to write about that, too, I guess. I have a lot of leg stretching to catch up on this year.
I will blog about his celebration of life party, and about the hell of watching someone die by degrees. Of watching the man who used to hold you up become the one you must support. I went from being a friend and a lover to a nursemaid. It sucked, but I am not alone. In fact, I now have 90-some thousand new friends walking my widow journey with me. I decided before he died that I would need a way to keep myself accountable. So I created a TikTok grief journal, and every day I post something. Some days are decidedly more interesting than others. Some posts show me drowning in grief, while others show me making new strokes forward in the ocean of possibilities. I’d love to have you follow me, and help me stay the course!
We’ve all heard that the first year is the hardest, although now I’ve been told it is actually harder in year 2, when the new loss becomes the new normal. But I need to get through year one first, one post at a time.
Grieving is something that takes place on a sliding scale. For me, that process really started October 1, 2021, when we first heard the words “You have ALS.” I can still remember everything about that. I dropped him of at the entry to the University of Minnesota Neurology department, and watched him limp inside, leaning heavily on his late father’s walking stick. I parked the car, then found him. Our roles had already changed. In the waiting room we were both casually terrified, trying not to look outwardly concerned. I think he was more worried than I was, which makes sense. I think he already knew the diagnosis. I was living on edge in the dark, impatiently waiting for someone to tell us he did NOT have that hideous disease, .
Once in the exam room, the doctor had clearly read through the myriad reports from other doctors, and had analyzed the test results. Rich sat on the exam table, while the doctor checked his reflexes. It seemed to take him less than a minute to declare Rich’s death sentence, but I am sure it was longer than that. I was sitting in the spare chair they always have in an exam room. I know it was just maybe 5 feet away, but the doctor’s words sucked all the air out of the room and I felt as unsteady on my feet as Rich had been for months when I lurched up and crossed to the exam table. I put my hand n his shoulder, but that wasn’t enough. I needed more. I pressed up against him, and clutched his leg, trying not to hold too tightly or breathe too loudly. In the few steps it took me to cross that increasingly claustrophobic room, I had a million conversations with myself. I transitioned from panic and sorrow to determination and caring, because that was now my job. I needed to be what he needed, whatever that was, and my own needs had to be put aside.
Now it is time, once again, to tend to my needs.
Slowly, the world we built for two has become a universe of one.
I still make the king sized bed, but only have to wash the pillowcases on one side.
His clothes, now donated, are hopefully bringing someone else a smidge of the confidence he had, and I have started spreading out in the closet, reorganizing my things to suit my new lifestyle.
When Rich was first diagnosed, we had two cars in the garage. Then three, when our daughter came home home for one last summer with her dad. Then two, when we sold his car. Then three again when we bought the wheelchair van. Then two, when she went to school. Then one, when I sold the van. My car now also lives alone.
It seems every week I rearrange a drawer or a closet. I feel like I am marking my territory, by making things work in my new normal. It is also a way of visiting with him on a small scale, as I run across something of his, whether it is a business card or a pair of swim goggles or a tool he never put away in the right place. I fear, and hope, it will be a long time before the last item is discovered. Like an archeologist, I will be unearthing bits of his life for years to come.
And every day, I unearth a bit more of my life. My new life. My widowed life. My rebuilding life. My strong, sad, capable, terrified, hopeful life.
I can do this. With the continued support and help from all of you, I will do this.
Siracusa, not Syracuse
The day after Christmas it was time to unwrap another gift: a new city. So we said arrivederci to the wonderful Mario, and headed south to Siracusa.
Siracusa is another stunning ancient city set on the ocean, founded almost 3,000 years ago by the Greeks. As opposed to the city of Syracuse, named after the Sicilian version, but founded in 1820. While the city was originally named Syracuse by the Greeks, the Italians prefer to call it Siracusa — I mean, they run the place now, and have for a couple thousand years, so they get naming rights, IMO.
We stayed in the historical center, the island of Ortigia, at the stunning Grand Hotel Ortigia. The hotel seemed to have what I felt were art deco touches everywhere (the stained glass elevator is worth a visit alone). HWSNBN and I had a room overlooking the harbor, while the kids had one with a view of the ancient stone streets.



Besides the lovely artistic touches, this one had something I never thought before I would love so much: a lift that helped HWSNBN avoid the many stairs into the hotel. It took us awhile to figure it all out, but we became pretty adept at it by the end!
After settling in, Sailor Boy told us he’d found a Michelin starred restaurant right around the corner for lunch: Ristorante Porta Marina.

TBH, I really just wanted to sit outside in the sun and have cheese and wine, but he was so excited about we made it happen. Unfortunately, almost every restaurant we tried on Ortigia had several stairs to get into it (I think the land and buildings have sifter over the centuries — or maybe they are built above the street to avoid flooding?). We were pretty disruptive getting in, but folks seemed understand. They politely went about their chic lunches in the brick-walled room, quietly supping wine and looking more fashionable at a simple weekday lunch than I ever would with hours of a prep for a gala. As I observed the other patrons, I realized they were all couples about my age and realized that this was their “post houseguest holiday frenzy” reward lunch. Just the two of them, sipping wine while they discussed all the family drama the had just observed.
We, of course, were thankfully still on family time.





After lunch, we met our next tour guide in the hotel lobby. He was a retired professor, and definitely had a different air about him than Mario. Less gregarious, and more studious, the kids didn’t connect with hm right away, and frankly neither did HWSNBN. I enjoyed his history lessons, but then I always dig that stuff. Mario understood Singer Girl’s need for Instagram breaks. Not so much the professor. And the guys in my family had that look of “is the lecture over yet?”
But that doesn’t mean we didn’t find Siracusa stunning and fascinating.
At the end of the tour, we were scheduled to enjoy a glass of wine at a café in the piazza, but HWSNBN as struggling. He needed to get out of his wheelchair; he had had enough. When I politely explained to the professor that we would have to cut the experience short, he was baffled. He simply couldn’t understand why we didn’t wat to get a drink when we were right there in front of the bar. I felt bad, but said we just had to go.
We got HWSNBN back to the room, and he settled in. The kids and I still had energy, so he insisted we got out without him. I wasn’t thrilled with the idea, but we got him settled and into bed. I made a reservation for a little place that sounded interesting, and the kids and I set off. When we arrived at Osteria il Cantuccio at 8pm, they weren’t even open yet (oops. Dumb Americans). The owners, a darling couple, spoke almost no English, so we used a method HWSNBN would appreciate: Singer Girl spoke Spanish to them. Between the two languages, much sign language, and the Google translate app, we managed to order a great dinner (side note: Sailor Boy’s Sicilian girlfriend was horrified when he told her about the restaurant. She was appalled that we would go to a Roman restaurant! I guess that’s like getting Southern fried chicken in New York, lol).





After we ate, we texted HWSNBN. He was still ok, and urged us to continue the night. So we wandered around in search of a bar for a drink. Places were pretty quiet, but we happened upon a place that was lively and we ordered drinks — Mojitos. Don’t ask me why. But the kids and I had a lot of fun that night, just hanging out and laughing. I think we needed it.



This was a conflicting evening for me. I was thrilled to explore the city without worrying about HWSNBN’s safety and comfort, and to spend time with the kids just by myself. I hadn’t done that yet, and it felt good to check in with them and see how they were doing, and to let loose a bit. But HWSNBN was back at the hotel, alone, uncomfortable, and, I’m sure, sad that he wasn’t able to be with us. It sucked. I didn’t even want to tell him how much we had enjoyed ourselves.
In the morning, we had an amazing brunch at the rooftop terrace restaurant at the hotel. Free Prosecco on the buffet? Yes, please!







Afterwards we hopped into the van and, with a new guide headed to the ancient yet newly trendy town of Noto (Mick Jagger recently joined the ranks of famous homeowners here. Originally, the plan had been a 10 hour day of drives and sight seeing, but this was our last full day in Italy (and with Sailor Boy), and we wanted to have some down time. So Mario and I had whittled the day down to what he thought we would enjoy the most, and thus we visited Noto.
It was a gloriously sunny day to visit a city whose architecture oddly, reminded me very much of the Palace of Fine Arts in San Francisco. This was a city fully destroyed by the earthquakes I mentioned in a previous post, and was rebuilt in a very baroque style, in a much “sunnier” color than the lava buildings of Catania. It also had some hilly areas, meaning that we all took turns “feeling the burn” as we squired HWSNBN around in his wheelchair!
Inside the Noto Cathedral, we were charmed by these wooden sculptures. They were made by Africans immigrants, out of the very boats in which they sailed to Sicily.


And I loved this elaborate manger scene in another nearby church!
Our guide recommended Caffe Marpessa for lunch. While we weren’t all thrilled with what we ordered to eat (except for taht soup — yum!), the wine was great, and the setting was perfect. It was probably one of our favorite meals for the atmosphere and mood — even if Singer Girl did get in trouble for feeding the prowling cats.








Next it was time for a little souvenir shopping, where I finally purchased one of the Turkish heads I mentioned in a previous post. (here is a great explanation behind their history and significance!).
When done touring Noto, we headed back to Ortigia where we left the boys at the hotel to rest up. Singer Girl, the guide and I were on a mission: search the charming streets for souvenirs, gifts, and a suitcase to pack all those clothes we had to buy when our luggage had been lost! We also needed some picture taking time, and knew the guys would not be into that.
Dinner that night was our farewell to Sicily — and Sailor Boy. He was driving back after the meal, as he had to be back on duty early the next morning. We went to another place where we were the first in the door, and where the steps were steep. No problem! In typical Sicilian fashion, a few waiters scurried out and carried HWSBNB up the stairs, wheelchair and all, lol. The restaurant, Anima e Cori, was a pizza place — the first pizza we had had on the trip I think. It was fun, it was casual, there were strolling accordion players and, frankly, many out of towners. But it didn’t feel touristy — it had been highly recommended, and we enjoyed it thoroughly. Our only regret was only ordering 2 pizzas, because the menu was amazing! Our fave reminded me of one HWSNBN and I enjoyed in Colorado the previous year, as it included honey as a topping. Still weird to wrap my brain around, but man is it good with the right crust and toppings!



I feel sad typing this, but it was time to say goodbye to my boy. It was a bittersweet moment, as we not only don’t know when we will see him again, but we also don’t know what HWSNBN’s condition will be when that does happen. But it was an amazing trip, and we treasured every moment together.
This time, though, HWSNBN was also not ready to call it a night. Back at the hotel, we headed once again to the rooftop restaurant for cocktails. It sucked that there were only three of us, but we laughed and rehashed the trip’s highlights. The next day we were hitting the airport (after another fantastic brunch, of course), but not to go home. We decided months ago not to rush, and we were headed back to Amsterdam for a night!

Buon Natale
So just a quickie about our Christmas celebrations in Sicily. As previously mentioned, we moved to Sailor Boy’s place for the holiday. We didn’t stay with him the whole time in Catania simply because he lives on the third floor, with no elevator, and, well HWSNBN can’t do stairs anymore. It took all three of us to get him up those steps. Singer Girl and Sailor Boy alternated schlepping luggage, steadying Dad from the front, and racing upstairs to turn the motion sensor lights back on (did I mention we moved very slowly?). I stood below, lifting each foot up each stair, left right step. Left right step. So yeah: it was a team effort.
As soon as we got inside, we opened wine. We deserved it.
Sailor Boy had ordered a bunch of food for us to enjoy that night and during the next day. There was pizza, pasta, baked chicken and more. After our dinner, we unveiled the traditional Christmas dessert in Italy: Panettone. Ours was a Ferrero Rocher one — gooey and sweet and naughty. Thanks, girlfriend Lisa, for picking it out!
Christmas day was super chill. In Sicily, Christmas eve is a long night of eating (mostly fish), so the day itself is pretty mellow. So we took a cue. We spent the day doing very un-Christmassy stuff, and generally relaxing. The views outside didn’t hurt.



We listened to odd rap Chirstmas songs (I will not subject you to Sailor Boy’s dance moves).

We had coffee and mimosas.

We played games.

We ate more panettone. We tried to convince Sailor Boy’s rescue kitties that we were nice.


We watched a Rick and Morty marathon.
We napped.
We watched a movie — Don’t Look Up. Not a typical holiday movie, but we weren’t doing normal Christmas this year, so it worked out.
After the movie it was time to head back to Catania (after descending those dreaded stairs, of course). In the morning, we were changing locations, so we needed to rest and pack. Sailor Boy was a great host, and it was wonderful just chilling family style all day. I don’t knw when we will get another day like that, so I will treasure the memoires– irreverent thought they may be!
Sicily is Not Italy…
If you read my last post, you’ll know that we have some new challenges in our lives. But I’ll be damned if we curl up in a ball and hide from the world.
So, despite HWSNBN’s ALS diagnosis, we set out last month on a long-planned trip to visit Sailor Boy in Italy.
Correction. Sicily.
Wait, you say: isn’t Sicily a part of Italy? Well, yes, politically speaking. And yes, they speak Italian and have phenomenal food and fashion sense, and horrific driving. But we learned quickly that when you are a land that has been around for 10,000 years, it takes more than a measly 162 years to make you really a new identity.
But more on the history lesson later. First, we need to get to Europe.
Months ago, before I knew we would have the ALS to consider, I decided to utilize a travel agent for the first time to get this trip planned. Enter the amazing Amanda from Pique Travel. She had everything planned: hotels, cars, tours and guides, even wheelchairs at every step of the way. We used the app Unmapped to keep tabs of all reservations and tickets, and of course utilized What’sApp to communicate with her and our European contacts.
ALS was our unofficial travel partner all the way through, and he made us nervous. He was always there in the back of our minds, slowing us down, causing anxiety as we worried about how he would try to complicate and crash the party. Thankfully, contrary to popular belief, the world is full of amazing, humans willing to go out of the way to smooth things out for us.
The minute we pulled up at MSP airport (driven by the amazing Abdulla, referred to us by friends Christie and Jim. Let me know if you need his number for your driving needs!), a wonderful airport worker jumped into action. Seeing me wrangling multiple suitcases and Rich trudging along with his walker, he declared: “You need a wheelchair!” We didn’t even get inside to ask at the Delta desk for the one reserved for us. The MSP staff took charge, chauffeuring Rich and helping me get everything to the front of the check in line. (FYI: being physically challenged DOES have its perks: we went to the front of every line in every airport in all three countries, from check in to security to boarding to customs. Nice!). After we were checked in, we were escorted through security (thank you Clear — always worth the subscription fee IMO), then had time to enjoy the PGA Lounge (courtesy of Priority Pass, a great perk we got with the Chase card — thanks for the tip, Thrifty Traveler!). We asked our escort what to do when it was time to head tot eh gate, and she assured me someone would meet us at the lounge, and they did. Our escort was going off duty, but came with a coworker to make sure we were cared for correctly. Wow: mad props.
The flight worried us: HWSNBN can’t move easily or quickly anymore. When he needed to get up to stretch or use the restroom, I walked in front of him, facing him, holding his hands to keep him safe. It felt precarious, and probably disruptive to some (it’s hard to walk steadily on a plane during the best of circumstances), but everyone resected our odd journey. Flight attendants cleared the aisles for us, and constantly asked how they could help. They also, before I could even bring it up, let me know that they had confirmed that a wheelchair would be waiting for us at the gate.
Classy, professional, caring. Thank you, Delta!
We arrived in Amsterdam unscathed, but tired. Normally I schedule flights to Europe for late in the evening, but this one was an afternoon flight. There aren’t a ton of flights daily to Catania, and we were also coordinating with Singer Girl, who was flying n from Detroit. Our flight landed a couple hours before hers, and we went to the transfer station to make sure we were all set for the next flight. The lovely woman at the KLM desk realized our luggage was not checked all the way through, so quickly fixed that — and told us to come straight to her desk when our daughter arrived so she could personally make sure hers was set as well. When we di that, the woman immediately recognized me and said “Catania!” I mean, how many travelers had she helped in the past two hours, but she still remembered us and our destination. I know I am pretty memorable, but wow: again we were impressed.
The flight was also uneventful, and we were treated with views of Mount Etna, quietly exhaling her volcanic breath as we approached.



Once again, a wheelchair was waiting for us. Unfortunately, our luggage was not. Somehow all the good efforts of the KLM transfer desk agent were in vain. I felt a bit like Etna as I dealt with the situation as best I could: breathing deeply to let off steam so I didn’t blow my top. I know HWSNBN was frustrated that he couldn’t really help. Singer Girl went out to greet our driver, Stefano, and fill him in on the delay. We had no idea where our nags were or when they would arrive, given the afore-mentioned lack of Catania flights. But we finalized the paperwork, loaded ourselves into the van, and headed, finally, to the hotel.
Sailor Boy was meeting us for dinner, and bringing along his darling Sicilian girlfriend who we had of course not yet met. I informed him of the AWOL luggage, and he assured me our hotel was in a prime shopping district. Once HWSNBN was safely ensconced and napping at the hotel, Singer Girl and I ventured out to get supplies for the next two days. I typically don’t visit any stores or restaurants on vacation that I can visit at home, but desperate times call for desperate measure, and there were an H & M and a Sephora on the same block, so off we went. We purchased some basics for all 3 of us, and headed back to quickly do what we could to tidy up before dinner.
We were staying at the Hotel Una Palace in the heart of historic Catania.




We had a small suite: spacious bedroom, bathroom, large walk through closet and small sitting area with couch. It was just the right size for spreading out and wheeling about a walker and wheelchair. The hotel had an elevator, which theoretically made it accessible for those with mobility issues, but man those European shower/tub combos are a bear when someone is unsteady on their feet and can’t easily bend their legs! But we managed!
We supposedly had reservations at the stunning rooftop restaurant, Etnea. However, when Sailor Boy and the Lovely Lisa checked in for us, the restaurant couldn’t find our reservation. Exasperated, I sent them Sailor Boy the confirmation email. He texted me shortly afterwards.
“HAHAHA. Mom. That’s in Turin. I don’t think we can make that reservation, it’s a good 3 hour flight.”
Well. Dammit.
They were able to fit us in — although an hour later than we planned, because Sicilian restaurants rarely open for dinner before 8pm. So we made do with snacks and the best damn tasting cocktail I have ever freaking had. Dinner was great. We all laughed, and were so happy to finally be together. Lovely Lisa was as charming as Sailor Boy is goofy. She was nervous meeting us, which is silly, but I understood. She hit it off (I think!) with all of us.




After dinner, it was more than time for bed. HWSNBN and I crashed at the hotel, while Singer Girl was staying at her brother’s apartment. We said goodnight, eager to see each other again in the morning to begin our Sicilian experience in earnest (and in newly purchased clothing…but I digress…).
HOtels in Europe do the free breakfast thing waaaay better in the states. I popped down in the AM and brought up a plate for HWSNBN. Here’s a really underwhelming pic of the buffet, which had cakes, pastries, meats, cheeses, fruits, veg and more.

After breakfast, we met Mario, who was to be our guide (and friend) for the next few days. We were doing a walking tour of Catania. We met the kids at a café, where Mario plied them with espresso and arancini, the amazing fried rice balls native to the area, as they had not been privy to the luxurious hotel fare. Fortified, we set off.
So about that history lesson! Sicily has been inhabited for 10,000 years, and, during that time, has been settled or ruled by many dynasties, including the Greeks, Romans and Bourbons. All over you see the influence of these cultures and all the others around the Mediterranean. The Turks were in charge for awhile, and during the Muslim rule of the 9th through 11th centuries, Catania became known as the city of the elephant. Why? There is a black lava stone elephant fountain (topped with an Egyptian obelisk) in the main square. U Liotru, as it is called, is the city’s symbol. Was there an elephant on the island? Maybe!

The island’s buildings and layout are absolutely colored by not only the cultural diversity, but by the geological history. Catania is known as the black city, as the oldest roads and buildings are made from lava stone (thanks, Etna). But thanks to massive earthquakes and WWII, the cities are varied, making them a fascinating architectural study (many buildings were constructed not only on top of old foundations, but from the ruins of the ones that preceded them).
Italians take their Christian holidays pretty seriously. Sicily is famous for its creches, or manger scenes. This one inside Sant ‘Agatha of Sicily, who was born in Catania, was stunning — and about 10 feet long!



There are certain things I always take pictures of on holiday: markets, doorways and side streets. This trip was no different. Mario led us to a stunning food market, where we feasted with all our senses.
Oh: and I also have a thing for funky vehicles…

The fod market was an appetizer course: we had local pistachios and nut brittles, and Sailor Boy had oysters right there on the street.
Then Mario directed us down this charming street…

…then directed us to wait in front of a shop. Singer Girl took the opportunity to make a local feline friend…

…and Mario worked his magic. As we watched, a flurry of people swarmed out of the shop, and set up little tables and chairs for us. They set the tables, and invited us to sit. nest thing we knew we were eating cheeses and meats, hand picked by Mario, and drinking wine, as we watched the world go by. One of my favorite trip moment, as a humble alleyway became OUR personal restaurant.

Then we wandered further through Catania, back through the square and past our hotel. The main street was bustling with shoppers. We looked in windows, but we were so happy to be outside in the sunshine we didn’t want to stop. A running joke began that day: the Sicilians thought we were crazy. While we reveled in temps in the 60s, they bundled up in scarves, coats and gloves. At one point, someone yelled to a tank-top clad Singer Girl “where are you from?!” We enjoyed stressing Mario out by our lack of winter garb!
Our last stop on the tour was at Savia, where Mario treated us to more arancini and pastries — and wine, of course. Mario had “American prosecco”: Coca Cola.



We said goodbye to Mario for the day, the kids headed back to Sailor Boy’s abode, and HWSNBN and I went to the hotel to nap — and see if our luggage had arrived. No such luck. I logged into the website provided me by the Catania airport, but it was all in Italian. I decided to go to Twitter to get answers. I described our plight, mentioning my husband’s medical condition and the fat tat we were in town visiting our military-serving son. KLM responded less than 4 minutes later! Within 30 minutes we learned our luggage had boarded a flight to Rome the previous day by mistake, and would be arriving at our hotel within a few hours! Such great news — and great customer service!
When it arrived, I unpacked and we got to shower and do all the things you take for granted when you have your luggage, lol. We decided to walk to the restaurant for dinner, rather than make the kids try and pick us up (it was tough to do so, as no private cars were allowed on the street front of the hotel). It was drizzly, so my hair was a mess by the time we got there, but it was a riot, navigating cobble stone streets in a wheelchair. I burned off all the days treats for sure, and we joked that it is not a vacation until HWSNBN and I get lost on a “Bataan death march,” as my family likes to call my happy meanderings.
That night we ate at one of Sailor Boy’s favorite Michelin star restaurants, Km0.
We had a dreadful time…




Singer Girl decided to crash on our couch that night, as Sailor Boy and Lisa had plans with her friends, and he wasn’t going on the tour with us the next morning (she also wanted to check out the hotel breakfast buffet!). We said our goodbyes, and went back to crash, and dream about what visual and gustatorial delights awaited us in the morning!
Catching Up Is Bringing Me Down
It has been so long since I have written — here, anyway. More on that in a minute.
This is a quickie, to just touch base and let you know I’m not gone. But 2021 was kind of a shitshow for me, and my new normal is kind of stinky as well.
In June, my dad died. He had suffered from Alzheimer’s for more than a decade, so it was time. The end wasn’t pretty (I’ll never forget the sound of the “death rattle” as the hospice nurse called it). But it’s over. He is no longer disintegrating piece by piece, so we no longer have the internal war of wishing him peace, but not wanting him gone. I have a tribute post in the works, and will hopefully get to that next month.
Last spring, HWSNBN (my husband who abhors social media) finally decided to see someone about some hip pain he was experiencing. The chiropractor helped for awhile. Then he saw an orthopedist, who suspected an arthritic hip from all his years of long distance running. PT was prescribed, but it got worse. During the Boston trip (read that post here), he calmly shared with me that he couldn’t feel his right leg. It “woke up”, but we were shaken.’
He tried a steroidal injection, and that helped for a bit. We managed a Vegas trip in July, and had a ball. But shortly after we returned, the pain was back, and worse. He continued to be unable to run, which was just killing him. The orthopedist was alarmed, and decided it was tie to see a neurologist.
What followed were rounds of tests — blood work, MRIs, EMGs, manual assessments and more. And then they were repeated. On October 1st, we learned that after excluding everything else, they determined he has ALS.
So yeah. Shit.
Since then we have been busy coming to terms with what that means, now and in the future. What future? Who knows. Could be years. Could be, well, not. So far his breathing, speech nd swallowing remain unaffected, an for that we are grateful. But in the just over 3 months since he was diagnosed he has gone from walking painfully to using a walker and now starting to rely on a wheelchair. His right leg is almost useless, and his left isn’t very cooperative either. His hands and arms are weaker, but we don’t know if that’s the disease or the result of overuse from gripping the walker.
Date nights are gone, replaced by home stretching sessions and the never-ending struggle to keep him comfortable. To that end, a lift-assist recliner, swivel tv tray with handle and sleep number adjustable bed are all entering the home in the next week.
Friends, family and coworkers have been phenomenally supportive. “How can I help?” is the phrase I hear mot these days (well, maybe “Donni can I get some help?” is uttered more frequently). From putting air in my tires to bringing meals, to moving things into the attic and running errands, people are amazing. Truly.
I mentioned earlier that I have been writing, just not here. We have a Caring Bridge site that we sue t keep folks updated (check it out here). It’s cathartic for me as well — although, as Singer Girl reminded me, it’s not a therapy session. So I tend to hold back on the feelings there. I will likely be less inhibited here.
But not every future blog post will be about being a CALS to my PALS (caretaker of one with ALS, and person with ALS. All the cool, exhausted people use acronyms). I hope to post tomorrow about our fabulous trip to Sicily to spend Christmas with Sailor Boy. Lots of photos, as usual, so I’ll get at least 3 blog posts about that.
Thanks for listening. I know it’s a downer, but life isn’t all vacations and fashion. Nowadays, I’m thrilled with any me time and clean sweats (is it wrong that I found my filling at the dentist this week a relaxing respite of me time?).
Go Westie, Young Man!
We got our latest foster on the last day of April. Ebby is not my typical foster: she’s a senior, and a small dog, and not very fluffy. I’ve had several surprised folks ask why I chose her, since she is clearly not my type. TBH I’m not 100% sure — maybe it was because she was so darling, and I’d never had a foster like her, and I figured she’d be super popular so she’d be adopted quickly. While all the rest proved to be true, that last little bit? Not so much.
Ebby is an owner surrender West Highland Terrier, who came to us from a Reservation in South Dakota when her owners had to move to a long term care facility. She was clearly well loved, and comfortable around everyone she met But she seemed to have been neglected a bit in the end, which isn’t entirely uncommon in situations like this. We assumed that, as a senior dog, she’d need a dental cleaning, but once I got her home we realized there were more layers to this stinking cute onion.
I could tell from a glance that her ears were infected and gross, and her nails were in dire need of a trim before they officially reached talon status. It also was rapidly apparent that she was deaf. Deaf dogs can be a blessing, and Ebby’s lack of hearing sure makes it easier to sneak around her and not interrupt her impressive sleeping habits (Miss Ebby Debby commonly sleeps 10-14 hours a night, and is a highly skilled napper as well.)
But when she wakes up and can’t find me, she gets a little concerned, and I have to chase her down the hall and tap her on the shoulder, or wave my arms frantically to get her attention. Mere inconveniences — there are way bigger struggles with some animals, including my own Stevie Nicks, who feels the need to bark at everyone until they are out of sight. But I digress.
When the Ebster went to her vet appointment they confirmed the hearing and teeth issues, and also revealed that — surprise! She wasn’t spayed after all. We added that surgery to the list. We also discovered several reproductive tumors (mammary and perineal), most likely the result of never being spayed. So those would have to come out. But before we could address all that, we needed to address the laundry list of minor ailments: double ear infections, skin infection, eye infections, etc.
Secondhand Hounds usually adds new dogs to the website on Wednesdays. and Ebby’s vet appointment was Monday. I forgot to notify the powers that Ebby was a medical case, and she was added to the website! Whoops…I didn’t even know until I opened my emails and saw a plethora of applications! I quickly notified my Foster Coordinator and the Adoption Coordinator and we pulled her from the site, then started responding to apps: “Hi, you know that cute dog you applied to adopt Well, she’s not adoptable. Yet.”
Westies are like crack to some people. I never understood it, but I do know. While she is not my “style” of dog, Ebby is cute and loyal and funny. She wants nothing more than to be near me, preferably cradled in my arms like a baby. Her little woo-woo voice is a hoot, even if I don’t always know what she wants. And when she starts moving, scampering is the only way to describe it!
So no it was no surprise that all that the three applicants were okay with the mistake. I promised to keep them apprised of what was happening, and invited them to meet her in the mean time. Two said yes (the other decided to wait and see what happened in her surgeries). The two that came, both retired couples, fell in love.
The first couple had recently lost a female Westie and was looking for a companion for Frank, their sad black Scottie dog. The wife wept when she saw Ebby! Ebby and Frank got along swimmingly, once Ebby confirmed that she would be the leader. The next couple didn’t have any other dogs, having lost their one and only. They came with family in tow, and all thought it was a good match. They also thought Ebby would be a great model for all the dog clothes the wife liked to make!
So I told them I’d keep them posted, but that nothing could proceed until after surgery.
While waiting for her surgery, Ebby got to know Stevie Nicks, even if she was a little pissy with her in teh beginning. I think Stevie’s big size freaked her out, especially when Ebby and I were cozied on the couch and suddenly this giant muppet would jump up next to her. To a deaf dog, that had to be disconcerting.
Ebby took field trips with us, met lots of poeple, and had playdates and overnights with other fosters.
She visited my dad at his memory care facility, and discovered that she loves being out in the yard, soaking up the sun.
On June 7, Ebby went under the knife. The vet wasn’t sure if they’d get everything done, or have to split it into two procedures. Thankfully, after about a 3 hour surgery, Miss Ebby emerged minus 6 teeth, several tumors, and a uterus. She was white girl wasted for the rest of the day, even if she slept poorly that night. Getting her to eat enough to take her pain meds was a challenge. Icing her incisions helped, but only so much.
She didn’t sleep well that night, or the next (so neither did I). Sleeping in a cone is tough, and she paced a lot, which meant banging into things. We tried kenneling her, but she cried. The second night, she had had diarrhea, which worried me. The vet had warned that the surgery to remove the perineal surgery was invasive, and could result in some fecal incontinence. Now we had some drippy issues. After taking her outside, and coming to verbal blows with HWSNBN (he doesn’t do well when a dog interferes with his sleep), I went online and started ordering doggie obesies on Amazon.
The next day I discovered the key to sleep: at night, Ebby wore a onesie and a diaper, but no cone. She left everything alone, and we had no mess to clean up. We were doing frequent butt baths (can’t have poopy stitches ) — sometimes 5 a day. But gradually things started to heal and I got rid of the diaper. But she still sleeps in a onesie — at least until the stitches come out.
I emailed all potential adopters after the surgery, letting them know she had two weeks of recovery minimum before she could go home, and that we needed to wait on test results. A few days later I warned them about the fecal incontinence. The adopter who hadn’t met her never responded. The one with Frank the terrier decided they couldn’t handle that, and gracefully bowed out. The last one? The dog fashion designers Offered to mail me the diapers left over from their last dog, who had been incontinent — and asked me to measure Ebby for some new outfits.
So now Ebby has a person!
The next step was waiting on test results, which we received a few days ago. The perineal tumor, and the largest mammary tumor, do show cancer. What to do? Wait and see if the cancer would progress, or do further, more invasive surgery. That surgery is beyond the scope of our crack vet team, so we would need a specialist. If we end up doing it, it’ll be another month before she can go home. What to do?
The vet said she wanted to discuss it with the adopters, so they have been playing phone tag. I have suggested a “foster to adopt situation, where the adopters take her home, but bring her back to us for any treatment. and the adoption is finalized when the treatments end. So that’s where we stand right now. Ebby gets her stitches out tomorrow, and hopefully her mama and the vet can chat. I had the adopter fil out the foster paperwork, and I will be doing a virtual home visit this weekend. The adopters are super busy with long-delayed family reunions, a funeral, and moving her mother into a care facility, and then them into her home. All of this is taking pace in North and South Dakotas, where they and their family live. Many adopters would just bow out, or ask me to hold onto her for awhile. But these folks are willing to squeeze in a multi-hour drive to and from the Cities to get her as soon as the paperwork is done.
I love them.
I do hope Ebby gets to go early next week, as she is super attached to me and, while it has its charms for me, it’s tough on the rest of the folks in our home when I leave (she woo-woos when I am gone). She has spent time at other homes, and has settled pretty quickly with them, but that was before the surgery.
Since the surgery, besides becoming my white shadow (remember that TV show?), she has become perkier. That could be because she is eating and sleeping even better than before (I didn’t think she could ever sleep more, but she does). I think she didn’t eat much before because her teeth hurt so much, the poor baby. She has become adventurous, wandering down the driveway when she wants to go for a walk, or sniffing her way into our off-limits forested backyard. She never complains when I catch her; I just scoop her up and cradle her like a baby. Maybe she does it just to get the extra lovies? Hmmm…
Anyway: I hope I can soon share pics of Ebby with her new family. We will probably take another little foster break after this, as I need to work in the yard and exercise, and I am really bad at both when I have a foster. Plus we have a busy few months coming up with lots of fun stuff I can’t wait to share with you all!
In the meantime, I will love on Ebby, and be grateful for the chance to help her find a better forever!