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!
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 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!
We woke that morning without a horse’s head in our beds. But Mario was still about to make us an offer we couldn’t refuse.
Today, we would visit some of the locations for the filming of one of the best movies of all times, The Godfather, perhaps the best sequel of all times, The Godfather Part 2, and one of the most unfortunate series films, The Godfather Part 3. (Coppola really should’ve stopped with number 2, but that’s a discussion for another day).
We met Mario and our driver in front of the hotel and started our journey north. Along the way, we stopped to take pictures at The “Cyclops Riviera.” Sicily is steeped in legend, as are all ancient places. If you remember your Homer, during his journey Odysseus and his crew sought refuge on an island, where they feasted on fresh water and sheep they found. Unfortunately, the “shepherd” was a giant one-eyed dude who didn’t take kindly to the theft. One thing led to another” sailors were eaten, the Cyclops got drunk, Odysseus blinded him, and the remaining crew escaped, only to have the Cyclops furiously hurling rocks after them into the sea.
These, legend has it, are those rocks.
We climbed back into the van and resumed our trek, past the shadow of Mt Etna, winding up the hills to the village of Savoca.
When Francis Ford Coppola was scouting Sicily for locations, he first went to the village of Corleone, where the fictional family originates. But filming was impossible there, and the town was too modern. But a native of Catania suggested Savoca and, upon visiting it, Coppola fell under its spell.
So did we.
The film changed the town’s trajectory: it became famous, but it is so isolated it retains it’s charm. There are a few “modern” buildings, but they mimic the ancient styles so they don’t look like eyesores. Local artist Nino Ucchino did a stunning mirrored sculpture as a tribute to Coppola. Despite it’s clearly modern look, it works, and the symbolism is clear: the town saw itself reflected in his vision, and he saw the film reflected in their town.
When you turn away from the sculpture, you see the Bar Vitelli. This is where Michael sat when he first saw Apollonia, where he asked about her to the bar owner (who happened to be her father), and where he ultimately proposed.
Mario told us of the woman who owned the bar and her lifelong relationship with Coppola and the actors in the film. Inside is a room devoted to memorabilia (and quaint stuff — not some plastic schlock you’d find in a tourist trap).
It was time to sit in the sun and sample some of the amazing granita — just a frozen ice and fruit or nut concoction. While we debated which flavor was best (lemon, almond or pistachio — almond won IMO!), we enjoyed watching the kitties play around us.
Next Singer Girl and I tucked HWSNBN inside the cafe with an espresso, looking rather godfather-esque.
Then Mario guided us up a series of windy streets (NOT wheelchair friendly) to the church where Michael and Apollonia were married.
As you can imagine, this town was very Instagrammable. Patient Mario indulged Singer Girl and I all day. Hopefully you will as well. Here are some of my favorite shots from Savoca.
We had one more stop on our Godfather tour: Forzo d’Agro, and the only location in all three of the movies. This little hillside village with majestic views of the Mediterranean. We didn’t stay long, but wandered a bit and enjoyed the atmosphere.
Then it was time to head back to town to rest up for dinner. Sailor Boy had been busy running errands, as the next day was Christmas Eve. We were joining him at another of his favorite restaurants, Sapio.
Sapio is in some ways similar to Travail, here in the Twin Cities, where food is performance art, and you never quite know what you are getting. It was surprisingly, well, rigid for an Italian restaurant. there were four set menus, and everyone at the table had to agree to the same one. The problem? Most had fish/seafood, which I don’t eat. We finally settled on a menu, even if Sailor Boy and HWSNBN were sad they couldn’t enjoy some of the delights taunting them from their preferred menus. But the wait staff wouldn’t budge. Things were a bit tense for a minute, as this dinner was clearly important to Sailor Boy. But once the menus disappeared an our wine glasses filled up, we relaxed. The menus only mentioned the traditional four Italian courses: an appetizer, a primi (often pasta), a secondi and dessert. But those were just the tip of the ice berg. All told, I think we had about a dozen courses, each one prettier than the next.
Needless to say, we were more than ready for bed when dinner was done. We said goodnight to the kids, who would meet up with us again in the morning as we did our last official day with Mario.
I had heard that Taormina was not to be missed, so when Mario suggested we rearrange our itinerary and visit there, I easily agreed. Today, Sailor Boy joined us, so the whole family enjoyed a day of stunning weather, vistas and, of course: food! On the way, we pulled over to get a great look at Mt Etna.
Next our driver brought us first to a beautiful overlook, where we enjoyed the sparkling Mediterranean views (and took some Insta worthy pics, lol).
Then it was off to the ancient amphitheater, where they still hold concerts amid the crumbling ruins.
Mario’s wife Mara owns a leather goods shop in Taormina (Mara’s Handmade Leather), so we decided to check it out when we got to town. So cute! We purchased a few gifts for friends, then wandered for a bit. It was Christmas Eve, so families were out in full force. Of course, they thought we were nuts: it was 65 and sunny, and most of us has bare arms. The Sicilians were bundled up (it was about 60 degrees warmer than at home for us!). It has been great travelling to places “off season,” as we were practically the only Americans we saw — in fact, there were very few non-Italians in a typically very crowded town. Taormina reminded me a bit of Vail, with its meandering streets full of quaint shops and restaurants.
I loved the jewelry in this shop’s windows!
And look closely: this is NOT what you think it is!
The Christmas tree set up in the main square was a great place to gather and enjoy just being together. As Mario Puzo wrote in The Godfather, “a man who doesn’t spend time with his family can never be a real man.”
Mario asked us to meet him outside one of the many churches when we were ready for lunch. For years I have been fascinated by old churches and cathedrals, and now Singer Girl seems to find them just as captivating, so we investigated this one while the boys waited outside. By many standards, this church was humble, but to me just as lovely as far richer places of worship.
Lunch that day was one of our favorite meals (even if the locale was NOT wheelchair friendly). Mario set us up to eat outside at Osteria Santa Domenica. Between the sunshine, the service, the food and the wine, it was one of the best moments of the trip. And those fried artichokes…
It was time to head back to the hotel. We were heading to Sailor Boy’s place for the night and the next day — it being Christmas Eve and all! So we packed up for the night, and headed to his place!
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.
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.”
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!
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?).
So there’s this bug going around…
No, I don’t have it — yet.
Am I the only one out there not freaked out, but still get that it is a real thing? I mean, I know I will likely get it, or at least be exposed to it if I haven’t been already. I also assume that, sadly, I will know someone who dies. That’s an awful thought, but the odds are likely.
In the meantime, I am not sitting around wringing my hands and obsessively watching press conferences or reading charts or graphs or statistics.
My life has changed, sure. Date nights are gone. So is any personal space. My activities at home have to be curtailed to accommodate our home being turned into an office and school space.
The first time it started feeling real for our family was on our trip to Seattle Feb 27-March 2nd. That was about the time it started breaking open in Washington. As we wandered through museums and tourist attractions, rode planes and Ubers and ferries and monorails, ate samples at food markets and didn’t wash our hands enough, the bug was out there, closing in.
On Wednesday the 10th, HWSNBN was sent home from work to self-quarantine. He hasn’t been back to work since. That was the first way the pandemic has affected the family. We are lucky that he is still working — but keeping puppies quiet during his conference calls has been challenging.
At my weekly marketing meeting for Secondhand Hounds, the animal rescue I work for, we discussed possibly changing our upcoming events. I reached out the next day, Thursday, to my upcoming puppy parties (that’s what I do: I run our puppy party division), assured them that animals can’t spread the virus, but if they wanted to reschedule, that’s fine. No one took me up on the offer.
The next day we sent another letter, informing that all events were canceled, whether we liked it or not.
About that time my daughter and son were starting to feel the ripple effects where they are.
Singer Girl goes to school in Michigan (Go Blue!). She loves it there. I told her to prepare for things to change. I told her that her A Cappella group’s trip to Boston would likely be canceled. She said no way (it was canceled). I told her folks would soon be leaving. She said no way. The local kids started heading home temporarily. The school canceled classes for two days to decide how to handle the situation. They went to online classes. She wanted to see what would happen with all the social stuff. When St Patrick’s Day and Aca prom and here sorority’s charity event were all canceled, she was stunned.
I told her she would be coming home soon. She said no. She was still working; in fact, she was working more than she ever had, to cover the shifts of all those who had left already. She also worried about exposing us to anything she had come in contact with.
I told her she would be coming home. She said she didn’t want to leave her friends. I said just start emotionally planning for it. She rolled her eyes, and we hung up.
Two hours later she called and said, “Ok: come get me.”
So last Thursday I drove 10 hours to Michigan. We packed her up the next day and drove back on Saturday.
Now, we all have to juggle wifi and quiet time so she can do her studies, HWSNBN can do his work, and I can stay sane while they step all over my routine.
Sailor Boy is supposed to change duty stations this summer — to Italy. Not sure if that’s going to happen now. The military is taking some major steps to deal with the virus, and his day to day life has drastically changed. He calls every day, and we discuss the latest development. Will he go to Italy? Will he stay with his current ship? Will he deploy? Will the navy help him move? Will I have to go to Washington and help?
Weirdly it’s like wartime. It’s what he signed up for, I tell him. In a lot of ways, this whole gig reminds me of what I imagined WW2 was like. Folks are sacrificing and stockpiling. We are being told to use supplies wisely. Many common items are hard to come by. People are churning out homemade masks and hospital gowns to protect health care workers. Neighbors are checking in on one another. Again, we all are waiting for that shoe to drop: who will we know that will pay the ultimate price?
Rescue is all weird now too. We have been told to stop doing spay and neuter surgeries. We’ve already cut our office staff to a skeleton crew. On the plus side, more people than ever before want to foster. Sadly, we are unable to take in as many animals as we usually do, as we have cut down on transports to minimize potential volunteer exposure. So we have fosters just waiting to help, and we can’t get needy animals to their waiting homes.
On a day to day level, my life isn’t radically different. I am not worried. My philosophy for most of my life has been to plan for the worst, hope for the best.
In 2015, I saw a movie that pretty much changed my life: Bridge of Spies. Tom Hanks stars as an attorney on cold war America, called upon to defend an accused Russian spy. He funds the situation distasteful, to say the least, but does his civic duty Upon meeting the spy in jail, Hanks’s character explains the gravity of the situation, while the accused spy calmly listens. hanks, exasperated, asks why he is so calm. Isn’t he worried?”
“Would it help?” the Russian replies.
Would it help? Does worrying help? No, of course not. It just stresses you out. So from that moment on, whenever I get that nagging feeling, I pause and take a breath. Rather than waste energy worrying, I take action. Do what I can to take control of the situation, then let it go.
That’s where I am now: I have done what I can to prepare. Now I breathe. And wait.
Whenever HWSNBN attend social events — company parties, dinner clubs, drinks with friends — people always have the same fascination. The same desire to know, to pick our brains.
“So…tell us about those date nights!”
We chuckle and look at each other. He sips his drink, and I start talking.
The three questions we get asked most:
- How does it work?
- How often do you do it?
- Where do you get the ideas?
So how do the date nights work?
Our date nights stemmed from a conversation HWSNBN and I had in late August 2018. Singer Girl had just left for college, and the nest was empty. My husband of just weeks shy of 25 years looked at me and said: we are in a rut. He said he didn’t want us spending the rest of our days just going out to dinner and binge-watching Netflix shows. I agreed,. But I said I didn’t want this to be a one-sided thing, where I have to plan everything and then feel (whether rightly or wrongly) like the pressure is on me for us to have fun.
So we came up with a plan: we would take turns planning date nights. If it was my turn, I’d have it all planned out, with no input on the planning front from him — which meant he couldn’t veto what we were doing. The same goes for when it is his turn. That veto thing is the most important part of making these date nights work. How many of us come up with an idea for something to do on a Saturday night, but when we ask our significant other, they say “I don’t know, Nah. I’m not feeling it”?
If the other person doesn’t know what you are doing, they can’t kill the idea.
This also means that we get to do things we want to do — even if we know it wouldn’t be the other person’s first choice.
Our first planned date night was my choice, and we went mini-golfing at the Walker Art Museum in Minneapolis. that night, we also tried our first selfie. We are really bad at those and have pledged (well, one of us did) to do them every date night. We try to send them tt he kids, partly to let them know we still exist, partly to let them know we are doing ok (and partly to brag. Singer Girl has wistfully proclaimed she can’t wait to be 21 so she can hang out with us, as we seem to know where all the cool places are!).
How in the world do you find things to do?
We have done a lot:
Museums and galleries and art festivals
Countless amazing restaurants, bars, and breweries.
Inflatables courses. Pumpkin carving extravaganzas.
And so much more!
It is super easy to find things to do. I have always been a list maker and a collector of information, so I have folders of ideas. I have a paper one, filled with articles I have cut out of papers and magazines. I also have a computer folder with things I have seen online. The internet is amazeballs for this sort of thing: once you start clicking on things, you get suggestions thrown at you left and right. I mean, all you have to do is think about something and you get targeted ads, right? Well, imagine what happens when you start actively looking for things to do.
If I can’t think of something new and timely, I search local calendars. My absolute fave Twin Cities one for kooky ideas is City Pages. I have signed up for their suggestions, as well as tons of others. Here are a few interesting ones:
Sometimes you have to plan far in advance. I planned this Friday’s date about 3 months ago because I needed to buy tickets for something. I know he would’ve said no if I asked him, but afterward, he will say “I am glad we did this.”
How often do we manage to do date night?
Do we do it every weekend? No, but we try to. I have it on the calendar: Donni plans date night, HWSNBN plans date night, alternating weekends, so we know in advance who’s up to bat (yes, we’ve been to baseball games — and football, and soccer!).
Sometimes life gets in the way and conflicts inevitably arise. It is a lot harder to do when the kids are here, and, full disclosure, we are kind of glad when they go back from whence they came so we can get back to our adventures. We are also pretty busy socially in other ways, so sometimes we have to squeeze stuff in. The holidays are tough. His work travel can make it challenging.
But we can feel when it has been too long.
We start to go back to the boring, with not as much to talk about. Let’s face it: marriage is hard! We have been married 26 years this fall, and actually have known each other for 34 years. When you start out with someone, often the moments are somewhat stolen, and you fit the person into your life. They don’t know you, and you don’t know the, so every little factoid is fascinating (“you use toothpaste? I do too!”). Relationships are like fish: if you don’t keep swimming, they die.
HWSNBN sometimes says he feels like the date nights are a competition. I do not. I feel like they are a great way to learn more about ourselves and to do things that make each of us happy. Maybe I feel this way because I have always felt that pressure to make sure we had a good time, and now I feel it is shared equally.
One side benefit that we didn’t expect: all those people who ask us about date nights. I have people (often life-long Minnesotans who are younger than us) asking for suggestions. I think it’s so cool that we inspired folks to get off the couch and try new things.
Yes, it’s my turn this weekend. We will hit the road around 3pm and drive to an unknown destination (that’s another fun part: keeping it a secret as long as you can!). We have to be back by 930 the next morning, as we are booked solid: the Chilly Open for him in the morning, our Gourmet club Sat night, the Klondike Dog Derby Saturday and Sunday, and cramming as many movies in before we take the couch for the Oscars Sunday night.
And the couch will be okay then because we know that our next adventure is just a few days away! Happy dating to you all!
Just keep swimming, just keep swimming…
I’m a member of a popular Facebook Group called Grown and Flown. Ostensibly it’s for parents whose kids are in the high-school-college-just beyond age group. The topics covered are too diverse to count, and can focus on all sorts of highs and lows, most pertaining to the drama of young adulthood. Some posts are braggy, some are heartbreaking. Most of the time people are looking for help, such as advice on how to pay for college, what to do when your child’s heart is broken after that first big romance ends, or how to deal with kids driving you nuts.
The other day someone posted something that had been discussed before (frankly, most topics get re-introduced regularly. Reminds me of how similar we all really are). This topic: “What’s a reasonable amount to spend for a prom dress? We are not trying to create entitled attitude but do want to make this special for her.”
Now any time anyone asks a question on social media the answers are gonna range from helpful to hurtful. This was no different. This was my response:
“No one can tell you that! It’s up to you… To me, it’s not about the money. It’s about the memory of THAT MOMENT…don’t do what you can’t afford. But do what feels right. I leave practical for grocery shopping and doing housework.”
Recently I was reintroduced to the high-stress world of prom dress shopping. I thought that those days were behind me (I also thought my days of wondering what school my kid would attend were over as well, but that’s another post). However: Drummer Boy is a high school senior, and he and Singer Girl are still going strong, even after a year of separation (sort of — they saw each other every month, lol).
So it’s prom time again. Which means, of course, shopping again. She wants it to be special but was torn, because she knows last year we spent a lot, and she wants to be practical. It’s not her prom. And wouldn’t it be nice to get something she can wear twice?
I totally understood where she was coming from. And I appreciated it. So when we ventured out, we tried to be fiscally responsible and cognizant of her desire not to look like she was in high school still. She had a look in mind, but we couldn’t find it. Then we started broadening the search parameters and kept venturing away from re-wearable and back. Then we danced towards glitzy and pricey, then retreated.
Anxiety was building. I tried to keep an even facade and let her lead the way. But she was stressed, and the whole time we shopped, I was battling the inner demons of wanting to give her everything and wanting to pull back. After a while, I realized that even though she didn’t want us to go overboard, I was prepared to do so. Why?
Because every day I hear of a family that will never again see their daughter dress up in a beautiful gown. Or of a mother who can’t be there when her daughter shops for her wedding dress. Or a father who won’t be there to be uncomfortable when he sees a young man look at his daughter in awe.
I’m not morbid. But life sometimes sucks. And it’s effing unfair. And shit happens.
Last week we lost a friend. I wasn’t super close with him or his wife, but close enough that we always stopped when we saw each other in the schools or gravitated towards each other at work functions. My husband worked with him and was close to Mark, and the loss gutted him. An amazing man, gone too soon (only 62). Bigger than life — and now, suddenly, gone.
I tried to put myself in his wife’s position, shocked and stunned and overwhelmed. All those plans: gone. All the dreams that would go unrealized. What would it be like, to not be able to do another date night? To quarrel over the kids’ choices? To laugh at the foster dogs and their antics?
Time is short, and memories are precious. I’m not saying anyone should do anything that will truly be a burden for their family. If it’s a choice between paying your bills or buying the fancy, expensive, never-to-be-worn again dress, don’t buy the dress.
If I can afford to spoil my kids, I am going to. If it’s not a financial hardship for my husband and me to take a trip, we’re going now — and not waiting for someday. If I don’t have to choose between groceries and the overpriced glass of chardonnay from a winery a friend raved about, I’m buying it (but I might not share).
When it came time to choose the prom dress, we actually went home with 6 options and we had a voting party with Drummer Boy and HWSNBN. Silly? Maybe. But it’s a memory for all four of us now. Someday Singer Girl could become Mrs. Drummer Boy. Who knows? And someday, when people are reminiscing, this story might be laughed about in a moment of sadness and loss.
Ultimately she picked the first dress she tried on — a respectably priced one. But she actually really loved another outfit as well. It was a jumpsuit, and not really right for prom. But she loved the way it made her feel (and frankly, when an outfit makes you feel good, you should buy it. Period.), so we kept it as well. So yeah, we weren’t totally practical.
But that day was well spent. We didn’t fight. We had fun. What could’ve been a stress-filled trip ended up being a happy one. Maybe when she wears that jumpsuit, she’ll remember that day and smile. I don’t get enough days with my kids anymore, so I want to treasure what I get. And I think they get that.
There’s a funny meme going around, that reminds you to think about what you wear carefully because if you die that will be your ghost outfit. Silly, yes. But it also reminds me: be careful how you end every conversation or experience with someone. If they never see you again, that will be their last memory of you. At our friend’s funeral, one of the sons said that losing their dad suddenly wasn’t as bad because they always knew where they stood with him. He never let them wonder if they were loved.
Buy the dress.