Looking Forward to Summer

One of Mama Kat’s writing prompts for this week is to share what you’re looking forward to about summer. Summer is my favorite season. I just love the sunshine and warm temperatures, even though I don’t care for temperatures above 30°C. In 2018 and 2019, we had a lot of crazily hot weather, with temps rising to nearly 40°C on several days each year. I don’t like that. However, usually our summers are warm but not hot.

The main thing I look forward to each year, is my birthday. My birthday is this coming Sunday – I’ll be 35. This year, I don’t really have much planned and am a bit apprehensive about it, but I bet I’ll still have fun once it’s there.

On Saturday, my husband and I are going to visit my in-laws. My husband talked about asking his Mom to make lasagne. Without celery, mind you. Yes, she usually puts a small amount of celery in her lasagnes and, while I am not so picky anymore that I’ll fish it out of my serving, I don’t like it at all.

I haven’t asked my mother-in-law for any specific present, so I’m not sure what I’ll get. Last year, she gave me a giant teddy bear.

On Sunday, my actual birthday, my parents will visit me and my husband in Lobith. They haven’t seen the house since we bought it, so my husband will likely have a lot to show them. I’m a little worried about topics to talk about, as I don’t want to cause tension by bringing up my own issues. My staff suggested I tell my parents that we went to the monkey zoo a few weeks ago or the like.

I asked my husband for an outdoors side table for on my balcony. From my parents, I asked for jewelry-making supplies. I really hope my creative juices will be flowing again soon.

I will probably return to the care facility by about 6PM. During our evening coffee break, I will treat my fellow clients at the care home to custard cupcakes or nut bars (those who can eat those).

As for my plans for the rest of the summer, I am hoping to visit some new places, like the local large playground. Aside from social distancing, most restrictions due to the pandemic will be lifted by this Saturday (hopefully not to return again by the fall). I also hope to go on many walks, as well as sit on my balcony some more.

What are you looking forward to this summer?

Mama’s Losin’ It

Today Is Tuesday, June 8

I really want to write, but I’m feeling pretty uninspired. I already looked through my collections of journaling prompts, of which I have many. However, even though a few prompts spoke to me, I just couldn’t get myself to put fingers to keyboard and actually write. Until now, that is. Instead of writing an actually meaningful post, I’m just going to freewrite.

Today I got my original Braille display, the one with the water damage, back. The technician also explained why this model can’t handle even a little water on it even though the old model, the one that got the cup of tea over it seven years ago, could. This model’s Braille cells are somehow covered, so if water enters them, there’s no way it’ll get out. He didn’t explain the point of creating cells like this, I mean, what would make them better than cells that haven’t been covered like the ones in the old model. I think it might even be an effort to make the Braille displays not last as long, but of course the technician wouldn’t say so.

In the afternoon, my mother-in-law visited me. We drove to a relatively nearby forest and went for a short walk. Then we had coffee and apple pie. We also drove by a supermarket, where I got blueberries and fruit gums. The fruit gums, I already consumed.

Both my mother-in-law and my husband have been asking me what I want for my birthday, which is on the 27th. I have asked my parents to order from a specific jewelry-making store which is local to them. For my husband and mother-in-law, I really don’t know what to ask for. I mean, I’ve been tempted to ask for the interactive cat my mother-in-law originally wanted to buy me last year. Then again, that thing is over a hundred euros.

In the evening, I did a little more walking and had coffee. I more than reached my water intake goal for the day. I use the Water Reminder app on my iPhone again. It’s a pretty good way of keeping track of my fluid intake, as it also allows me to track other beverages. And just so you know, yes, it actually takes away water when you drink alcohol. That makes me believe its calculation of amount of water in beverages is pretty accurate.

I also read my Bible again. I decided to pick it up in Genesis where I left off when starting to read Daniel on Sunday. I don’t expect to be reading all the boring Old Testament stuff, but for now I’m at least sticking to a Bible reading habit.

And a writing habit. See? I can really make myself create a blog post if I just want it badly enough. And I do, since WordPress is now keeping track of my blogging streaks. Yay me!

Truthful Tuesday: Birthdays

Hi all! It’s Tuesday and I’m feeling a little better still than I was yesterday. I’m still having a cold, but it’s mostly manageable now.

Today I’m participating in Truthful Tuesday. This week’s question is: as you have gotten older, do you still celebrate your birthday, or has it become just another day to you?

The presumption behind this question is that, as we get older and the effects of aging become less positive than they were when we were a child or teen, some people no longer appreciate their birthdays.

I find, and maybe this will change when I get even older, that the opposite is true. I will be 35 in June and have found that, with increased age, does come increased wisdom. I am probably not old enough yet to start feeling depressed about my life’s regrets. That doesn’t mean I don’t have many, but they don’t weigh me down that much as of yet. I hope that won’t come either, but I’m pretty sure it will.

In contrast, when I was a child, I feared growing up. My birthdays were fun because of the gifts I got, but that’s about it. I never felt that flash of excitement that some children and teens feel as they get older. No, not even (or especially not) when I turned twelve, sixteen or eighteen.

When I turned 30 in 2016, I did have some mixed feelings. I was excited to be allowed into the over-30s groups on Facebook but also felt that, at my age, I could no longer have emotional outbursts. I still did. That latter feeling subsided over time though as I realized a neurotypical ten-year-old wouldn’t have meltdowns like mine.

My birthday has always been an exciting yet stressful event. Now though, it’s more exciting than stressful usually. My parents don’t make a point of telling me to act grown-up anymore. For this reason, them visiting me for this occasion – usually the only time a year I see them in real life -, is mostly fun.

I do indeed still celebrate my birthday. Months in advance, my husband starts asking me what I want for my birthday. It’s also a bit of a tradition that he takes the week around my birthday off from work.

Most years, I spread out my birthday party over several days, as I don’t want to have the house full of visitors. Last year, the visiting restrictions due to COVID were lifted the day before my birthday. This meant that my parents could actually take me out for a ride in their car rather than having to sit in the care facility’s garden for the entirety of the visit.

My mother-in-law visited me the day before and brought me the giant bear soft toy. That’s another thing that makes birthdays fun: I love getting gifts. Of course, I can buy myself the things I really want too, but I actually like the fact that people give me something I wouldn’t buy myself.

Maybe, now that I’m inn my thirties and don’t have to act grown-up, as I’m on disability and in long-term care, I can finally feel the excitement of being a kid at heart.

What a Day, What a Year! #SoCS

Today I got my COVID test results. Thankfully, I’m negative. Like I mentioned yesterday, I went into room-based isolation with cold symptoms and a sore throat yesterday morning. That day in isolation was hard. I constantly imagined testing positive for COVID. That’d mean at least five more days in quarantine. It’d also mean I would have to alert my nurse practitioner and the facility’s behavior specialist, both of whom I’d seen on Thursday.

I felt intense guilt about possibly having infected my staff too. After all, when I was still only experiencing a sore throat, the staff tried to reassure me that I couldn’t possibly have COVID. It may be true – I had my second shot of the vaccine last week -, but I couldn’t be sure.

Can you imagine that, a year ago, we were just at the beginning of this pandemic? On March 12, 2020, the first local case of COVID-19 had been discovered. On March 13, the community service event that was due to take place at my day center as part of a countrywide volunteering initiative, had been canceled. The day center closed five days later, on March 18.

I hadn’t seen my husband since the first weekend of March I think and wasn’t going to see him again till sometime in late May. After all, at first visiting the care facility was discouraged, then it was completely prohibited except in rare cases when a family member was essential for a client’s care. My husband wasn’t.

I am so glad that now, during the second lockdown, care facilities remain open to visitors except when there’s an outbreak of COVID or suspected COVID, as in my case yesterday. I am so glad one of my fellow clients, who had her birthday on Tuesday, may receive a visit from her family tomorrow.

I had my own birthday on June 27, one day after the final restrictions to visiting were lifted, provided there’s no countrywide lockdown or COVID outbreak. Though we’re in a countrywide lockdown again, the lockdown policy remains that care facilities can be open. I credit the prime minister’s late mother, who died in a nursing home during the first lockdown or so I believe.

This post was written for today’s Stream of Consciousness Saturday (#SoCS) prompt of day/week/month/year.

A Favorite Childhood Gift

One of Mama Kat’s Writer’s Workshop prompts is to share about a favorite Christmas gift you received as a child. Here in the Netherlands though, Christmas isn’t that popular for gift-giving. Instead, we celebrate St. Nicholas on December 5. I can’t remember that many gifts I received for St. Nicholas and the entire celebration was one big stressor once I no longer believed in St. Nick. We celebrated it until I was 20 in 2006. Then in 2007 I was in the psych hospital and my parents didn’t want to risk inviting me. That’s how the tradition ended.

The other major gift-receiving opportunity was and still is, of course, my birthday. It is on June 27, so pretty much as far from Christmas as you get it. Still, I’m going to share about a favorite gift I received for my birthday as a child. Mama Kat twisted the prompt too by listing several things, so oh well.

I can’t remember whether I had invited anyone to a birthday party when I turned eleven. After all, I was pretty much friendless at the time. However, I did celebrate it with my family. The main gift I remember getting was a Barbie doll with aerobic attire. I named her Teresa. I loved the doll, even though I knew already that eleven was a little old to play with it.

Later that summer, my mother took me on a “mother-daughter walk”, which was mainly an opportunity for her to tell me the school had recommended I go residential there. She claimed the reason was that I had behavior problems, which she attributed to my having too many toys. I can’t follow that train of thought other than through some idea that I was so spoiled I somehow felt entitled to have tantrums. That wasn’t true, for clarity’s sake. In any case, my mother regretted having given me the Barbie doll.

I cherished Teresa even more from that moment on. When, during the following school year, I’d have a meltdown, my mother would often pack a random number of toys and claim to throw them out. (In reality, she hid them in her room downstairs.)

The followign year, when I turned twelve, I felt so ashamed for still playing with Barbie dolls that I claimed they’d aged with me, so it was okay. Most of the dolls are still with my parents, I think. I think at one point I broke Teresa’s leg though and had to actually throw her out.

Mama’s Losin’ It

#WeekendCoffeeShare (June 27, 2020)

Happy late Saturday evening everyone! Welcome to another edition of the #WeekendCoffeeShare. Today is my birthday. I think I still have tompouces in the fridge, so grab a cup of coffee, tea or your favorite cold drink and let’s catch up.

If we were having coffee, I would share that I was stressed out all week about my parents visiting yesterday. As regular readers of my blog may know, my parents are big on independence and in denial of most of my disabilities. They don’t think I should be in a care facility. Like I said yesterday though, they weren’t overly judgmental. My father made a rather bad pun on the facility’s name and my mother asked whether no-one had taught my nonspeaking fellow clients to talk, but that was about it.

If we were having coffee, I would tell you about all the lovely presents I got for my birthday. My parents gave me a drinking bottle with fruit infusion filter. I’d had it on my wishlist for years and am now loving making fruit-infused water. They also gave me a spiky or hedgehog ball. My father said it looked like a virus and my husband joked that they’d gifted me corona. Lastly, they gave me some punches, which I can use in cardmaking or other craft projects. They got these as well as the spiky ball at the thrift store.

My husband gave me a sturdy bookcase for my iPhone. It’s supposed to protect your phone against dropping from 2 meters. I’d rather not try it out though.

Lastly, my mother-in-law gifted me this giant teddy bear! It’s 1.60m tall, which is even taller than I am. I love it!

Giant Bear

I’m still not sure what to call it. I initially called it just Giant Bear, because my big panda was called Big Bear and my not even that little bear stuffy was called Little Bear. Or something. I can’t remember, honestly. Then I figured I should be calling it Joenie, which is my nickname for my husband. My husband said to call it Baloo after the bear in Jungle Book. I guess I’ll call it whatever strikes my fancy at that moment. Rainbow/Sofie, the unicorn, also has two names, after all.

If we were having coffee, I would tell you I ate some delicious Domino’s pizza this evening. My husband and I had it delivered to the care facility. I had the spicy chicken pizza and so did he, as my husband usually ends up liking my pizza more if we each order something different. I loved it! Then I had some ice cream for dessert. I got a nice present from the care facility too: a Domino’s gift voucher. I already have a reputation for eating lots of yummy food, even though today was the first time I’d ordered Domino’s since coming to the care facility last September.

If we were having coffee, I would tell you that next week, I have a meeting with my community psychiatric nurse and nurse practitioner from mental health. We’re going to discuss my possibly getting EMDR treatment for some of my traumatic experiences. Now that my visit with my parents went well, I feel slightly guilty about considering some of my experiences with them traumatic, but well.

If we were having coffee, I would report on my steps as usual. This week so far, I reached just over 60K. I managed 69K last week and am doubtful I’ll reach that this week, as I’m probably going to have a lazy Sunday tomorrow.

How are you all doing?

Not Their Baby Anymore

Tomorrow is my 34th birthday. My parents came for a visit today. My mother, for the first time in so many years, didn’t openly reminisce about the time I was a baby. In fact, she seemed rather relaxed.

I was born three months prematurely. My due date would’ve been September 29, 1986 instead of June 27. Most if not all of my multiple disabilities are the direct result of my premature birth. I mean, it’s controversial to say this about autism, as most people in the autistic community claim it’s purely genetic. I have some genetic risk factors too, in that both my father and paternal grandfather are/were of the broader autistic phenotype. We can never be sure though how much my genetics contributed and how much the brain bleed and subsequent hydrocephalus I suffered did. In any case, my blindness and mild cerebral palsy are both due to my premature birth. My blindness is caused by an eye condition called retinopathy of prematurity and my CP is due to the aforementioned brain bleed.

As much as I sometimes seek to discuss my early childhood with my parents, I’m happy neither brought up the topic this year. They were in some rather brutal ways confronted with my current life. After all, due to the COVID-19 measures, I couldn’t be at my husband’s home when they visited. This was one of the first times my parents actually visited me in a care facility. When I was in the psychiatric hospital, either they’d visit me at my student apartment or later at my and my husband’s home. I think there were a few years, probably 2010 and 2011, when I had neither, but they always managed to take me out to some restaurant or something then. They were probably confronted with care facilities a few more times, but not in the past eight or so years.

A fellow resident tried to hug my mother when she came in. She didn’t comment. She did ask at some point whether my fellow clients can talk and I honestly replied that most can’t. When I told her there are clients in other homes I can talk to, she did ask why I didn’t live there then. I just said I didn’t have the right care profile for those homes or there was no available room.

Honestly, I’m totally relieved that my parents didnt’criticize me. I know they don’t agree with my being in a care facility. Still, they probably realized I’m not their little baby anymore.

Written for Fandango’s One-Word Challenge (#FOWC): baby.

What’s Up (June 2020)

Wow, can you believe it’s already the last Wednesday of the month? I truly can’t. Time flies! Today I’m joining in with What’s Up Wednesday.

What We’re Eating This Week

Well, like I said last month, I live in a care facility with food delivery, so I don’t get to meal plan. We’ve been having an insane amount of baked potatoes lately though.

What I’m Reminiscing About

Not really anything. I mean, occasionally memories pop up, but they’re usually neither pleasant nor significant to share about here.

What I’m Loving

Sunshine! The weather is truly beautiful out here. Tomorrow and Friday the temperature is supposed to rise to 30°C (86°F). That’s a bit hot for my liking, but oh well.

What We’ve Been Up To

Lots of walking! I loved taking several long’ish walks a day with my staff. Today it was a bit hot, but we managed two shorter walks anyway.

What I’m Dreading

My parents possibly being judgmental about my living situation. They will visit me for my birthday on Friday. As much as I try not to stigmatize my intellectually disabled fellow clients, I still fear they’ll feel shame.

What I’m Working On

I started working in the book DIY MFA yesterday and immediately was inspired to write a piece of short fiction. It’s not remotely good enough to go on the blog and it doesn’t have an actual ending yet, but I liked the writing process.

What I’m Excited About

My birthday! Tomorrow, the festivities will start with my mother-in-law visiting. On Friday, my parents will visit. That’s a little scary, but it’ll likely be okay. Then on Saturday, which is my actual birthday, my husband will be visiting. I invited him to get pizza delivered.

What I’m Watching/Reading

I’ve been watching Diagnosis on Netflix and reading the book by that same title, written by Lisa Sanders. I also finally started reading The Falling in Love Montage by Ciara Smyth. I’ve been excited about it ever since I first heard about it in like January. It was released earlier this month.

What I’m Listening To

I’m frequently listening to the Harp Music for Sleeping playlist on Spotify. It’s very relaxing. This afternoon, in fact, I fell into a deep sleep listening to it.

I’ve also been discovering podcasts. Early this month, I mostly listened to true crime podcasts. Now I’m occasionally listening to progressive Christian podcasts.

What I’m Wearing

A skirt and a black T-shirt. I have three skirts that are the exact same model yet a different color. As I am blind and haven’t labeled my clothes, I don’t know whether this is the blue, green or red one.

What I’m Doing This Weekend

Having pizza with my husband on Saturday, like I said. I’ll probably have a lie-in on Sunday.

What I’m Looking Forward To Next Month

Probably visiting my husband for a weekend again. Like I mentioned a few times, the visiting rules at my care facility will be relaxed come this Friday. This means I’ll be allowed to go home to my husband for a weekend again. I don’t want to right away, but I’m hopeful in July I’ll be able to go a few times.

What Else Is New

My husband has two weeks off work this week and the next. He’s getting workmen over to replace the outer doors and some other big things that need doing.

What’s up with you?

It’s Been Three Months

Today, it’s been three months since the day center closed due to the COVID-19 lockdown. A few days earlier, we’d already been advised not to get visitors at the care facility, but the no-visiting rule didn’t take effect till March 25. Over at Mama’s Losin’ It, Kat asks us in one of her writing prompts this week how we’re doing three months into lockdown.

Of course, the restrictions are slowly being lifted. As of May 21, we’re allowed two visitors, ideally from the same household. They still need to maintain distancing, can’t have physical contact with us and can’t enter the care homes.

I found out yesterday that more restrictions may be lifted as of June 26. I already arranged for my parents to come visit me on the 26th, as my staff said this was okay even though my mother-in-law will be visiting me on the 25th and my husband on the 27th. I guess they’re being less strict as it’s my birthday on the 27th.

The new rules, if they take effect on the 26th, would allow limited outside activities, such as visits with family. Then again, a lot is still uncertain and is left up to the specific homes’ staff and management. Regardless, the day center won’t fully reopen till October.

I’m doing pretty well amidst the lessening restrictions. I mean, I’m really excited but also a bit anxious about possibly being allowed to go home to Lobith again. It’d be cool if I could have a real birthday celebration even if it isn’t right on the 27th.

With respecct to the day center, I’m happy it won’t reopen fully till October. I feel a lot more comfortable getting day activities in my own home, where I can retreat into my room. I also think I get more support now. I really hope a way will be found for me to retain a similar level of support once we return to the day center.

It’s interesting that, with quarantine having lasted for three months and still a lot of restrictions remaining, I hardly ever think of COVID-19 or the lockdown. Last week, another writing prompt I came across was about quarantine and I couldn’t think of what to write for it. Several people I know were tested for coronavirus recently, but I readily assumed they would be negative (and they were).

Other than that, we don’t shake hands and keep our distance whenever possible. That will likely continue for a long time still. generally though, I’m going with the flow, as they say.

Of course, I’m happy I can see my husband and family again. I’m also still very happy that this thing didn’t happen last year, because then I’d have to stay at home alone for so many months. Remember, the day center won’t reopen till October. Now this feels comforting. Last year, this definitely wouldn’t have been the case.

Mama’s Losin’ It

What’s Up (May 2020)

Today, I discovered What’s Up Wednesday and thought I’d join in. What’s Up Wednesday is a monthly linky in which bloggers recap their past month. Here goes.

What I Ate

I don’t meal plan, as here at the care facility, we get meals delivered. I didn’t have the greatest meals this past week. Last week Wednesday, I had a fish curry that had fish bones in it. I ate part of it nonetheless, but eventually got annoyed and left the rest. My husband told me that this was unacceptable indeed. My staff sent out a complaint.

Then on Friday, I had vegetable rice only. Vegetable rice is just rice with a tiny bit of veg in it. I had no meat or meat substitute in my meal at all.

Thankfully though, over the past few days, the food was okay.

Then yesterday, my day activities staff and I put hamburgers on some type of grill for lunch. It was delicious!

What I’m Reminiscing About

I haven’t had the best month with respect to my mood. For this reason, a lot of memories have come up. I have been discussing some in my sessions with my community psychiatric nurse and also writing about them on here.

What I’m Loving

Being able to see my husband again! Due to the coronavirus lockdown, my care facility had a no-visitors policy for the past two months. Thankfully though, the policy was lifted last week. My husband and I still can’t have physical contact or even be within a five-feet distance, but it’s okay. I’m just so glad to meet my husband in real life again.

What I’ve Been Up To

I’ve been doing a lot of walking over this past month. The weather is really good. We had one rainy day, last Sunday, but overall it’s been really sunny and warm outside.

I’ve also been blogging a lot over the past month. I’m so glad to keep up the productive spirit!

What I’m Dreading

Nothing really. I did have a rough few weeks and was dreading a crisis happening again. Today is a pretty good day though. The tech guys installed the door sensor that will alert the night staff if I elope again today.

What I’m Excited About

Seeing my husband again this Saturday!

I’m also excited about getting Italian takeaway this Sunday. I’m probably going to get a tuna pizza.

What We’re Doing This Weekend

It’s a holiday weekend here in the Netherlands because of Pentecost. For this reason, we’re getting lots of extra treats at the care facility. Other than that and seeing my husband, I don’t have much planned.

What I’m Watching

Nothing to be honest. I’ve been thinking about getting a Netflix subscription again, but haven’t gotten down to it.

What I’m Reading

Nothing at the moment, but I did finish two books this past month: Wonder by R.J. Palacio and Wink by Rob Harrell. I reviewed that last one earlier this month.

What I’m Listening To

I’m mostly listening to the Pop Warm-UP 130 BPM playlist on Spotify. I actually love the upbeat, fast-paced tunes to “dance” to.

I also got myself a ScribD subscription, though I unsubscribed again after a few weeks. I listened to Anne of Green Gables as an audiobook on there. I must say I don’t think I see the benefit of audiobooks.

What I’m Working On

My birthday wishlist! I asked my husband to help me install a new iPhone that I’m goign to buy. I haven’t bought it yet, but am looking forward to doing so in a few weeks.

I’ve been looking at a sensory supplies store again for birthday gifts to ask my in-laws, parents and sister. I think I want a Jinglin’ ball. This is a soft ball that makes a sound when rolled. The adaptive supplies store for the blind also sells ringing balls, but these are too hard for safe playing with my fellow clients.

What I’m Wearing

Orange Dress

I have had this orange dress for a few years already, but hardly ever wore it before going into the care facility, because I can’t fasten the ribbon. I am loving it though. I also asked my staff to do my hair for this picture.

What I’m Looking Forward To Next Month

My birthday, obviously! It isn’t till the 27th of June, so we’ll have another What’s Up Wednesday before that, but oh well.

What Else Is Up

I think that about covered it.