Share Your World (December 29, 2025)

Posted on by Astrid

Hi everyone. I have a lot of thoughts floating through my mind, but none that I can easily type down. To get my fingers started on something, I’m taking part in Share Your World. Here are Di’s final questions for 2025.

1. Do you stay up to toast in the New Year?
Whether I’ll stay up until midnight depends on my mood. I’ll however most certainly not be toasting in the New Year. The staff here leave at 10:30PM as usual and I’m pretty sure the night staff are extremely busy by midnight with all the clients who are afraid of fireworks.

2.  Have you ever kept any New Year Resolutions made in the past?
I doubt it. I used to make extensive lists of New Year’s resolutions as a teen but I’m pretty sure that if I ever kept one, it was by chance. Now I call them hopes to keep the pressure off.

3. Do you have any plans for 2026?
I have hopes, like I said, although I haven’t penned them down yet. No definite plans at all. Oh wait, I’ll most likely continue to attend the monthly local brain injury meet-up, which has its first meeting of 2026 on January 19. I’m also intending to go to at least one real-life meeting for adults who spent time in the NICU and will attend the mild cerebral palsy meet-up if I don’t contract COVID again.

4. What was the highlight/s of 2025 for you.
There weren’t any high highs this year, but I did have some good moments, such as my cooking activities.

Gratitude

Di always includes an optional gratitude section at the end of her Share Your World posts. For mine, I’m going to include a favorite affirmation from the Gratitude app.

I like how this affirmation compares human life to nature (or rather, the rest of nature). Indeed, I am allowed to go through seasons and each of the seasons prepares me for what’s ahead.

#WeekendCoffeeShare (December 27, 2025)

Posted on by Astrid

Hi all! Can you believe 2025 will be over with in less than a week? I honestly can’t. I’m joining #WeekendCoffeeShare again. It’s past 8:30PM, so no more coffee for me. My favorite soft drink wasn’t cold, so I had water with my evening medication today. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. We had a frigid Christmas with a daytime high of -1°C. Today, the daytime high is 4°C. That’s still below-average for this time of year though and it’s still freezing at night.

If we were having coffee, next I’d tell you I finally let go of my movement streak on my Apple Watch. That is, like I said before, I was cheating all the while because I’d paused my rings when sick last September. On Christmas day, it was freezing cold, so I didn’t care for a walk. I could’ve cheated again, but didn’t.

If we were having coffee, next I’d share about my Christmas. I was at my and my wife’s house for the night. Christmas is often stressful with family issues and forced cheerfulness, but this year it was genuinely okay. Then again it was just the two of us (plus my wife’s cat, who was in hiding from me almost all the time).

The best part was my Bastogne cookie dessert. It was my idea to make this and I helped crumble the cookies and lended my wife my hand mixer. The recipe though was for eight servings. We made half of that, but of course it’s still a lot for just two people. The rest of the meal was good too.

If we were having coffee, then I’d tell you that I decided to give the staff who’s retiring next week her polymer clay “cheer up frog” on Sunday rather than wait for her last shift. She was very pleased with it.

If we were having coffee, finally I’d share that, yesterday, I decided to download yet another self-care app on my iPhone. I already used to have a ton of them, like I’ve had a ton of different apps for all kinds of things over the years. This one, I downloaded because I read on another blog about affirmations and wanted to do these again. The app this blogger uses, Labyrinthos, isn’t all that accessible with VoiceOver and its paid plan is a little outside of my budget. Besides, much as I love to dabble in tarot (which this app is mainly about), the cards are still mainly visual. This got me looking for other apps for affirmations and gratitude etc. The app I downloaded is simply called Gratitude. So far, I really like it. I’m really hoping to make positivity a bigger part of my life in 2026.

The War on Time #3TC

Posted on by Astrid

Hi everyone on this cold Boxing Day. When I saw today’s #3TC prompt, I was reminded of a newspaper article my father shared with me in late 1999. It was called something like “The war on time” and was about all the ways people have fought over timekeeping and calendars over the centuries. It included, of course, the change from the Julian to Gegrorian calendar in 1582. I gathered from that article that our calendar’s still not fully aligned with the sun, so that it’s proposed that the year 4000 won’t be a leap year.

By the way, can you believe we’re closer to that year now than we are to the year Jesus was born? Interestingly, in that same article I read that Jesus wasn’t born in the year 0 (which I’m pretty sure no-one had a number for back then) or 1. He was probably born at least five or six years before then and most certainly not on Christmas day. It makes some sense to celebrate his birth around the end of the year though, but that would be closer to March rather than January. Then again, back in the day the months of January and February didn’t exist.

I used to love learning all about timekeeping and calendars. I could probably find a lot more info about it now, over 25 years later and with my having access to the Internet. But I can’t be bothered, honestly. I’d rather be writing random ramblings.

Now going to turn off my little electric heater. The heating in the care home broke down on Wednesday. I noticed I was freezing, but didn’t connect the dots, since it was supposed to be -5°C outside too. I spent the holidays with my wife and came back around 5PM this evening to a home that was still cold. The staff figured out the problem yesterday and it got fixed, but with the type of heating we have, it takes forever for the entire home to warm up, hence why I put on the heater.

What If 2034 Isn’t the End After All?

Posted on by Astrid

Hi everyone. I’ve been struggling quite badly with lack of meaning in my life lately. I mean, last week was pretty productive, but unfortunately that didn’t last.

Last Sunday, I was also discussing my comment that everything will be okay in 2034 with my wife. As regular readers of this blog know, I got the idea from the book 2034. Not that I’ve read it, but it’s about the next world war and I somehow decided to flip things around and say that everything will be okay. Originally, I was sort of serious, like I used to be about 2021 back in the early years of my blog. Now though, the only way I can picture 2034 is it being the end of the world in some kind of nuclear war.

My wife put things into perspective for me, saying that while it’s possible there’ll be a war between the U.S. and China in the coming decade, Europe most likely won’t be involved. That doesn’t mean there aren’t other risks, of course, but it sounds unlikely that the world is going to be blast to hell in 2034 or before.

This, however, doesn’t feel entirely comforting. The thing is, I’ve built my life around the idea that I won’t have ten more years to live. I’ll be 48 in 2034. That isn’t young, but it’s way too young to be dying of natural causes.

It somehow feels safe to say I will die in 2034 anyway. This allows me the luxury of not making any long-term plans. It allows me to take life day by day, week by week. It also allows me not to worry about my quality of life in the long run, which if I do think about it, doesn’t look good. My one-on-one has to be reassessed at the end of 2026. I’m scared that it’ll be cut and I’ll be forced to take more sedating medications to deal with the resulting challenging behavior. If that’s my life from 2027 on, all I can hope for is that it doesn’t last long.

Also, if life drags on past 2034, there’s no urgency to help me improve my quality of life. Not that there is according to the powers that be anyway. The team manager literally asked me what I’d do if everything isn’t alright by 2034. This was six months ago, when I was actively considering ending my life. I’ve not been actively suicidal since, but my life being finite has been on my mind all the time. And I’m not sure how I feel about this. On the one hand, I really want to make the most of the remainder of my life, but on the other hand, I am paralyzed by, well, I honestly don’t know what, and this leads me to think that I’d be better off dead.

#WeekendCoffeeShare (December 20, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare once again. It’s 7:30PM, so no more coffee for me today. If you’d like to grab a cup of your favorite beverage though, feel free to. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s still been warm for this time of year. Today, the daytime high was 7°C and that’s the lowest daytime temp we’ve had all week but it’s still considered above normal. We had some rain, but not too much and none is in the forecast for the next ten days.

If we were having coffee, I’d tell you I’m still meeting my movement goal each day, but I’m not nearly as physically active as I was over the summer. Not that I care. My cardio fitness level according to my Apple Watch is back in the below-average rather than low range. I doubt that’s correct. My sleep scores are also amazing most days. That makes me wonder why I wake up tired almost everyday.

If we were having coffee, then I’d share that I’ve had quite a productive week this past week. On Tuesday, I decided to put up a little Christmas decoration in my room after all. These are all my own polymer clay creations, though only the gingerbread figure is new.

Today, I finally created another cheer up frog. In case you don’t know, when several staff were on sick leave last spring, I created polymer clay frogs to cheer them up, the frog being a pun on the Dutch word for “cheer up” (“opkikker”), which has the word for frog (“kikker”) in it. One of the staff who’d gotten one last spring, asked for another one last September, but then we had an argument causing her to withdraw from my care. This staff is retiring in a few weeks, so when we had talked things over, I told her she’d get her “opkikker” after all.

However, by that time I was out of the right color of green polymer clay. I finally ordered new clay three weeks ago, but it took the store two weeks to get it delivered to me. By this time, I’d just ordered from another store. Now I have three packages of tropical green Fimo. This is alright, since I’ve since promised several more staff an “opkikker”.

If we were having coffee, I’d share that I also did quite a bit of cooking and baking over the past week. I cooked another chicken curry last Tuesday and baked a custard cake on Wednesday.

Yesterday, the same staff who went to the market with me last week, worked my afternoon activity. He had said last week that he didn’t particularly like the market, so I hadn’t asked him to go with me again, but he came up with it himself yesterday. This time, I bought olives again, but also peppersweets. I had no idea what these are and they tasted quite different than I’d expected, but they were delicious. I also bought fried chicken and mixed salad greens. Later in the afternoon, I prepared a salad using the olives, peppersweets, salad greens and also some onion and bell pepper I’d grabbed out of the care home fridge. It was absolutely delish.

If we were having coffee, I’d share that, yesterday, I attended the town’s annual Christmas lights walk. Two years ago, the staff were being difficult about me attending because it doesn’t end until 7:45PM and my activity time slot ends at 7:15. I made it very clear that I’m willing to think of ways I can cope without one-on-one, but my day schedule shouldn’t be an excuse not to include me. On Thursday, when the staff asked me whether I wanted to attend, i once again made sure they understood this. It was quite an enjoyable walk, though it’d been more enjoyable in previous years.

If we were having coffee, lastly I’d ask for positive thoughts regarding the changes to staffing that will take effect next month. My assigned staff (who is also in training to become a support coordinator), today did reassure me that my day schedule isn’t at risk. I hope she’s right.

Mother As the Giving Tree: Reflections on Conditional Acceptance

Posted on by Astrid

Hi everyone. Last Monday, I attended an online meeting for adults who spent time in the NICU as infants. It touched me on many levels. One thing that was mentioned was the fact that most NICU parents go through their own emotional process, which then is passed on somehow to their child in the NICU and beyond. For example, many parents back in my day and before didn’t know whether their baby would survive, so they didn’t attach to their babies as they normally would have.

I was also reminded of something I read in the book The Emotionally Absent Mother. In it, motherhood is compared to the giving tree in Shel Sinverstein’s writing. I don’t think I’ve ever read this piece, but its point is that the tree keeps on giving and giving and expects nothing in return.

I have been thinking about my parents’ attitude to me as a multiply-disabled person. When I suffered a brain bleed in the NICU, my father questioned my neonatologist about my quality of life and what they were doing to me. “We’re keeping her alive,” the doctor bluntly replied. My father has always been adamant to me that he wouldn’t have wanted me if I’d had an intellectual disability, because “you can’t talk with those”.

I have always felt the pressure of conditional acceptance. I’ve shared this before, but when I was in Kindergarten or first grade, it was already made clear to me that, at age eighteen, i’d leave the house and go to university. I tell myself every parent has expectations and dreams for their child. This may be so, but most parents don’t abandon their children when these children don’t meet their expectations and certainly not when it’s inability, not unwillingness, that drives these children not to fulfill their parents’ dreams. Then again, my parents say it’s indeed unwillingness on my part.

I still question myself on this. Am I really unable to live on my own and go to university? My wife says yes, I am unable. Sometimes though, I wish it were within my power to make my parents be on my side. Then again, the boy in Shel Silverstein’s writing didn’t have to do anything to make the tree support him either.

I’m linking up with #WWWhimsy. I was also inspired to write this post when I saw Esther’s writing prompt for this week, which is “giving”.

#WeekendCoffeeShare (December 13, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. I’m starting this post at 5:35PM as my iPhone is upgrading to iOS 26. I’ll probably finish this post after my evening coffee at 7PM. By the look of it, the iPhone update might not even have been completed by then, as my Internet is incredibly slow. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. Early in the week, the daytime highs were like 14°C and we had a little rain. No more rain today or yesterday and the temps have dropped to 10°C. That’s still warm for this time of year.

If we were having coffee, then I’d share that I’m still going strong meeting my movement goals on my Apple Watch and it’s now finally decided to actually add days to my streak. I broke my streak record a few days ago. The previous record was 309 days and it was set in June of 2023. However, of course I cheated with this one, as I paused my rings while sick last September.

If we were having coffee, then I’d tell you this week is a mixed bag. Early in the week, I found out that, as of next month, all self-employed temp workers will be let go. That’s understandable, as a self-employed person actually doing the same things as regular employees, is considered tax evasion on the part of the employer (in this case the care agency). The Tax Service had originally planned on handing out fines for this starting this year, but due to the problems in care and other sectors, it postponed this a year. I had known that this was going to happen for years, but due to the care agency’s careless attitude, hadn’t been sure that the care agency was actually going to follow through this time.

On Monday, one of the regular staff here, who is responsible for planning, said it’s indeed true and that this will likely lead to more staffing issues and possible cuts to our care. Other staff have been reassuring that my one-on-one hours have already been approved until late 2026 and I need not worry about cuts to my one-on-one. All this makes me quite worried regardless, as I’m just now learning to actually fill my one-on-one with enjoyable or meaningful activities.

If we were having coffee, then I’d talk about these meaningful activities. On Monday, I finished the Christmas decorations I crafted last week. No photo of the individual pieces, sorry, as my staff hung them on the branch that we use to decorate for the seasons before I remembered to snap a picture. I do, however, have a few pictures of the entire scene.


As a side note, my staff also borrowed some of my clay cutters for creating more decorations. These, I believe she is now finishing and will be putting up soon.

If we were having coffee, next I’d tell you that, yesterday, I visited the next town’s market again. I love going to this market, which is quiet enough that I don’t get overloaded yet there are enough stalls to buy all of the things I’d like to buy. I had fried shrimp at the fish stand. Well, one of two fish stands, actually. It turned out I usually go to the other one and like that one better, but I was with a staff who’d never been to this market. I also bought olives, mixed nuts and candy.

If we were having coffee, lastly I’d share that I finally got my mother-in-law’s access to my records at the care agency revoked. I had originally asked that she’d be given access because, for some stupid reason, the powers-that-be wouldn’t give me access. Their reasoning was that it’d lead to too much distress, something I now realize isn’t grounds enough for denying a patient access to their own records. However, due to this decision, for many years, nobody had access to my records, so the staff could basically write down whatever they liked. That’s why eventually I asked my mother-in-law be given access. Not that she ever reads my records or that I trust her to respond appropriately if she does. Now nobody has access again, but I’m soon going to persuade the behavior specialist and manager to give me access after all.

Reflections on Being a Thrown Away Golden Child

Posted on by Astrid

I’ve been struggling with memories lately, as well as with the role I played in my family. I was for the most part the golden child. For those not aware of what this means, this is the child in a family in which one or both parents are narcissists or otherwise emotionally immature, who ends up being the parents’ favorite.

My parents often half-jokingly (though it wasn’t funny) said that my younger sister was oh so nicely average. More like invisible, I’d say.

I, on the other hand, was exceptional in both positive and negative ways. I was a genius when doing calendar calculation, which for your information is a common savant skill in people with developmental disabilities. By contrast, I was threatened with being thrown away into institutional care and called all kinds of insults for people with mental illness when I was acting less than excellent. I at one point thought of printing out the table of contents for the DSM so that my parents at least knew the correct terms for what they were calling me.

Then, when I was admitted to the psychiatric hospital in 2007, my parents more or less actually threw me away. No, that’s not even entirely true: they threatened to abandon me when I announced that I was taking a second gap year in order to work on independence skills in 2006 and only came back into my life after the independence training home promised to prepare me for university and independent living. Which they couldn’t.

I struggle with both the fact that I was thrown away and the fact that I was my parents’ favorite before that. After all, it adds an extra layer of shame to my life: the layer of “if only…”. If only I hadn’t taken that second gap year… If only I hadn’t consented to being admitted to the psychiatric hospital… If only I hadn’t applied for long-term care… would I still be the hero… in my parents’ fantasy tale? In other words, isn’t it my choice to have fallen off my parents’ pedestal?

I don’t know how I feel about the idea that it might’ve somehow been my choice to be thrown away. On the one hand, I feel it makes me responsible for not having a “normal” relationship with my parents. On the other hand though, I know how many golden children turn out and that’s not pretty. Many end up repeating their parents’ toxic patterns with partners or children.

I’m forever grateful for being childfree for this reason (and others), as just today I had a memory of shoving my and my wife’s then cat Barry out of the bed. I feel forever guilty about this and the very thought of doing this to a child, makes me sick.

Remembering this and other things makes me realize I’m glad I didn’t stay in the golden child role. If I had, I might as well have ended up in prison… or should have.

#WeekendCoffeeShare (December 6, 2025)

Posted on by Astrid

Hi everyone. Yesterday, I had tons of ideas on my mind on what to blog about but no motivation to actually write. Today, it’s the opposite. I’m joining in with #WeekendCoffeeShare even though I think I don’t have a lot to share today. I, as usual, had my last cup of coffee for the day about half an hour ago and am going to take a break from writing this post to have my soft drink and chips. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. For most of the week, it was chilly but not rainy with daytime temps around 7°C. Today, the daytime high was 10°C but it’s been raining all day.

If we were having coffee, I’d tell you that I was pretty active for most of the week, both by walking and one time by cycling to the next town just to have a purpose for cycling. I didn’t need any groceries and we only ended up having a snack, but at least we weren’t aimlessly cycling around.

Today though, I spent the entire day indoors and still need to dance or whatever to reach my movement goal on my Apple Watch. My streak for whatever reason is still stuck on 33 days even though I’m moving each day and it’s been stuck on 33 days for a month or so.

If we were having coffee, then I’d tell you that I had many plans over the past week but haven’t accomplished a lot. On Monday and Tuesday, I did create some Christmas decorations out of polymer clay. Yesterday, I attempted to bake cookies. They turned out okay but not great and the process was frustrating. Nonetheless, it was better than lying in bed or staring into space, which is what I’ve been doing a lot lately.

If we were having coffee, I’d cheat a little with the coffee share being about the past week, since there was none last week. I’d share about the meeting I had with the behavior specialist early last week. It went well. First of all, like I said, the “one chance” rule about orienting new staff got ditched. My assigned staff, who is in training to become my side of the home’s support coordinator now too, E-mailed me the new orienting plan yesterday and it looks pretty good.

We also discussed my day schedule. In the future, I’ll hopefully get more set activities. In preparation for this, my assigned staff created instruction cards for some of my activities, so that I can hopefully do more activities regardless of which staff is assigned to me. She E-mailed these to me too and I gave some feedback.

If we were having coffee, lastly I’d share that I’ve been having lots of memories lately. And by “memories” I don’t mean good ones. Yesterday, for example, I remembered the team meeting for my current home I attended in the summer of 2023. One of the staff, when I told them that I can’t prepare my own lunch, replied: “But you lived independently, right?”. I immediately got defensive, because yes, I technically lived independently, but I shouldn’t have. Yesterday when I was talking about this with my wife, whom I’d first met when living on my own in 2007, she told me more about how bad it actually was. Until a few years ago, I believed that, while I couldn’t cope, this was mostly a mental thing. In other words, I was falling apart mentally but could really care for myself if I hadn’t been so scared. Well, no.

It is sad to realize that part of the reason why I need so much care is lack of training in childhood, adolescence and to a lesser degree early adulthood. I’m still struggling with my parents’ reasoning that they couldn’t have taught me because I was too strong-willed and just didn’t want to learn. It may’ve been true that I didn’t understand why I had to learn something that caused me frustration, but then isn’t it the parents’ job to guide the child through their frustration? I’m honestly still struggling with this.

The Wednesday Hodgepodge (December 3, 2025)

Posted on by Astrid

Hi everyone. I badly want to write but feel horribly uninspired. For whatever reason, I feel drawn to blog hops in which I haven’t participated in forever, like the Wednesday Hodgepodge. I haven’t participated in forever because I’m not a Christian and don’t want to elicit judgmental comments from fellow participants. I like the questions though and used to love the community spirit. This is a double-edged sword, unfortunately, in that I feel like I cannot fully be myself in Christian-centric communities. However, I can be myself on here and nobody is required to read or comment on my posts. With no further ado, here are this week’s questions.

1. What does it mean to have the “holiday spirit”? On a scale of 1-10 how is yours this year? (10=off the charts, 1=still looking for it)
I was immediately reminded of Tom Lehrer’s Christmas song when I saw this question.


That being said, I’m also reminded of the holiday spirit as referring to the spirit of community and connection to family and friends. In this respect, my holiday spirit is at a 2 at best. I, after all, hardly have any contact with my family and as of this year we’re not celebrating Christmas at my in-laws’ either. Thankfully, I will be going to our house to celebrate the holidays with my wife. However, since neither of us are religious, I don’t think it matters much that we’re being together specifically for Christmas. At least it’s a way to avoid having to spend time with our parents.

2. What’s your favorite character from a (December) holiday-themed movie, book, or TV special? Tell us why. 
I don’t think I’ve ever watched holiday-themed movies. When I was a kid, my parents used to watch musicals on TV on Boxing Day, like My Fair Lady, The Sound of Music, etc.

The only Christmassy book I remember reading is Murder on Christmas Eve by Ann Sutton. I read it last year, when I was more into the holidays than I am now. It’s a mystery set in 1920s England. Dodo Dorchester, the main character, is quite interesting.

3. Do you like gingerbread? Are gingerbread houses part of your holiday tradition?
I don’t care for gingerbread, but I don’t hate it either. No gingerbread houses here. However, yesterday, I did craft a gingerbread man out of polymer clay.

4. Much of our vocabulary is determined by where we live or where we grew up. What say you- sprinkles or jimmies? lightning bugs or fireflies? soda or pop? sneakers, trainers, or tennis shoes? sub, hoagie, grinder, or hero? freeway, highway, or motorway? frosting or icing? sauce or gravy?
I am a non-native English speaker, so I use the words that I know best: sprinkles; fireflies; soda (or coke); all three for the shoes but mostly sneakers; no idea what the next couple words have to do with each other; highway most of the time; both frosting and icing; sauce for pasta and gravy for meat/potatoes.

5. Share a favorite holiday memory from your childhood.
This is not Christmas-related, but since St. Nicholas is still not over yet (it’s December 5), I’ll share a memory of that. I’ve probably shared it a few times before: the last year that I still believed in St. Nick, my father recorded himself playing St. Nick’s servant Pete claiming to be stuck in the chimney. Not that we even had a chimney at that house, but what did I know? The next year, my father played the recording for me outside of the holiday season to make me stop believing for sure.

6. Insert your own random thought here.
Despite not being in the holiday spirit, I did create a few Christmas decorations out of polymer clay over the past few days. Tomorrow or on Friday, I’m also going to bake St. Nicholas-themed cookies.