Not Dead Yet

Posted on by Astrid

“Not dead yet.” That phrase has been on my mind almost constantly for the past few days. It’s the name and/or slogan for a disability rights organization most specifically focused on campaigning against the “death with dignity” lobby.

Though I am 100% in support of every individual’s right to die when and how they want, the key here is “individual”. This means no-one should be pressured into dying either by family members or relatives, doctors or the government. This is why the phrase resonates with me.

My best friend and I are now almost officially divorced. I say “almost” because we’ll still separately have to talk to a lawyer via a video call next week. I however already updated my Facebook status and told my parents. This may’ve been a mistake less than two weeks before my birthday, but I can’t undo it now.

My parents are saying they’re worried I’ll end up lonely in the institution. No amount of me telling them nothing’s changed about the relationship with my best friend, convinces them otherwise. They’ve actually invited me (and explicitly just me, without my best friend) for dinner at a local-to-me restaurant on my birthday. Too bad I’ll already be meeting my best friend.

That’s not the worst though. The worst are all the comments my mother made on the phone about how she’d rather die than live like this, how hard it is for her to see relatives in care facilities, how I’ve only deteriorated over the past 20 years, etc. She herself claims she’s already made plans of ending her life in the event my father passes before her. I respect that choice, because like I said I’m all for the right to die. But it has to be a right. The way my mother spoke, it made me feel pressured to end my own life.

As poor as my quality of life is at times, I’d still like to be the one making the decision whether it’s so unbearable without a prospect of improvement that I’d rather be dead. I don’t need my parents’ opinion on that. And at this point, I’m choosing to stay alive whether my parents like it or not.

Chosen Family #WotW

Posted on by Astrid

Hi everyone. Today, I’m joining in with Anne’s Word of the Week linky, as well as Natalie’s #WeekendCoffeeShare. My word of the week (or rather, phrase, as it usually is), is “chosen family”.

First, as I usually do when writing my weekend coffee shares, I’d like to write about the weather. Over the weekend, it was good: relatively warm and somewhat sunny too. I even sat in the sun for a bit on Sunday. However, most of this week brought cooler temperatures and rain. Today, the daytime high was 9°C. That’s considered normal for this time of year, which I honestly believe is crazy but oh well.

Now here’s why my phrase of the week is “chosen family”: several things this week made me realize my wife is more like family than my birth family. Yes, even now that we’re officially in the divorce process.

You see, we had our first meeting with the divorce mediator and financial advisor on Tuesday. I won’t go into detail as to what we’ve been discussing, but it looks like we’re both going to be okay and we’ll find a way together to make this work. We’ll have our next meeting on April 14.

On Saturday, I was at our house too. I got strange queries in Chrome so had run a full virus scan two weeks ago and it’d found a threat. I initially brushed it off, but finally told my best friend/wife. She was a bit stressed, because I had not paid attention to the full implications of this and for example changed my passwords. I didn’t know what the malware might’ve done, so went to our house on Saturday so that she could check it over. It looks like no actual damage was done, thankfully. In case I’ve mentioned the name of the recipe manager I used though (I’m pretty sure I touted it as the perfect app) and anyone’s installed it too: that was the source of the malware. No more Chrome extensions for me.

Today, my mother texted me to check on me. I, stupidly enough, called her. We’ve been in very limited contact for years now due to her attitudes towards my childhood trauma. After I got more of the same shit, among which comments insinuating that I should move closer to my family because my friendship with my best friend may not be forever, I had had enough. I don’t know yet what will happen in the long run, but for now I’m genuinely done with my family of origin. My best friend feels more like family than my parents do and yes, I’m aware that our friendship might dissolve over time. Then again, no relationship is forever.

My Existence Is a Medical Miracle, Or Is It? #3TC

Posted on by Astrid

Hi everyone. I just stumbled across Today’s #3TC prompt. In response, carol anne shares about her premature birth. She was born three months prematurely in 1980 and considers herself to be a medical miracle.

I, often, believe the same. I mean, I was born just over three months prematurely, albeit six years later than carol anne. I weighed 850 grams or 1lb 14oz at birth. I spent three months in neonatal care.

When I was younger, I’d occasionally half-jokingly say that I’m a calculation mistake. The reason is the fact that I was born at sometime between 25 and 27 weeks gestation. The official paperwork says I was born at 26 weeks 4 days gestation, but this wasn’t always easy to determine back then. My mother claimed that, back in 1986, the line between actively keeping preemies alive and only treating them when they showed genuine strength, was at 26 weeks. I never cared to look up whether that’s true, but I do know that my doctor was adamant he was keeping me alive. In this sense, not a miracle.

In another respect though, I’m definitely a medical miracle, in that obviously I wouldn’t have survived without medical technology.

Yesterday, I read about the Dionne quintuplets, who were born in 1934 and the last one of whom had just passed away. Compared to them, I’m not a miracle at all. I’m glad about that, as they were on public display throughout their childhoods.

Like carol anne, I realize I didn’t just survive thanks to medical technology, despite the fact that’s what my doctor more or less said when my father questioned him whether I should be continuing to receive treatment after my brain bleed. I wouldn’t have survived had I not had the will in me to survive.

This is somewhat of an interesting realization in light of my suicide attempts over the years. In 2017, I survived two medication overdoses and, this past summer, I cut my wrist. Thankfully, I survived and, in the case of the incident this summer, without medical intervention. I realize this means I still somehow have a desire to stay alive.

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”.

Kymber’s Get to Know You (January 9, 2025)

Posted on by Astrid

Hi everyone. I have been quite tired over the past few days, so didn’t do much writing. I’m still proud to say that this is my sixth blog post in January. Considering that some months in 2024, I only published five posts total, this is good.

Anyway, regular readers may remember me participating in the Wednesday Hodgepodge for a while. I stopped doing that, because I didn’t like it that the overwhelming majority of participants’ posts were heavily Christian-based. Now though, I seem to have found something to replace it with: Kymber’s Get to Know You. Here are the questions for this week and my answers.

1. What is the most memorable activity you did with your family as a child?
Not an activity we did as a whole family, but play-based learning with my parents comes to mind. For example, my father taught me to calculate squares using computer chips he’d been removing out of the devices himself. I also remember us looking at maps together. My mother also made little books in large print for me to learn to read when I was about four. Here in the Netherlands, children don’t usually learn to read until they’re six, but I was a precocious learner. My parents will probably be proud to see me list these “intellectual” activities.

2. What quality do you appreciate most in a friend?
Acceptance. I want to be myself with a friend and if they aren’t willing to accept that, fine but they aren’t my friend. I will also accept my friends for who they are. I don’t mean that mutual annoyances can’t happen. They happen between me and my spouse, who I consider to be my best friend, all the time. However, when it comes down to it, we accept each other for who we are.

3. What is one characteristic you received from your parents you want to keep and one you wish you could change?
My mother jokes that I inherited all my positive qualities from my father and all my negative ones from her. I was almost going along with it, because indeed the first positive characteristic I thought of comes from my Dad and the first negative one from my Mom. However, I’d like to boost my Mom’s self-esteem a bit (should she ever read this) and lessen my Dad’s. Therefore, I’d like to keep my Mom’s creativity and get rid of my Dad’s snobbishness.

Parenting Advice From a Childfree Survivor of Childhood Trauma

Posted on by Astrid

Hi everyone. Today’s RagTag Daily Prompt is “parenting”. Since I’m currently recovering from meeting my parents for my birthday, I’m going to make a list of parenting advice my parents should’ve received. I realize their inability to love me unconditionally wasn’t unwillingness. In fact, the fear that I may have this same inability is one reason I’m childfree. This post is a random list and may come across a bit harsh, but so be it.

1. A family is not a business. It doesn’t have to be run efficiently. Yes, I understand you get impatient with your child’s struggles at times, but this isn’t their problem – it’s yours.

I was constantly shamed for needing too much help and my parents gave up on teaching me basic skills of daily living because I got frustrated and the task didn’t get done efficiently.

2. Challenging behavior does not make the child (especially young child) bad or manipulative. Behavior is communication, yes, but to search for hidden motives behind it, is actually quite arrogant.

I was told by my parents that, by age seven, I had come up with some idea to manipulate everyone into thinking I was different in all kinds of other ways besides blind because I didn’t accept my blindness. News flash: I am those other things.

3. Children are incredibly loyal to authority figures, be it their parents, teachers, or others. When you fight the school or healthcare system over something rather than trying to be cooperative, the child will experience a conflict of loyalty. This means that, just because they side with you eventually, it isn’t necessarily in their best interest.

My parents were constantly fighting the school over my needs, because the school denied my intelligence. Then again, my parents minimized my emotional difficulties. When an educational psychologist who saw both my intelligence and my emotional issues, nonetheless advised special education for me, my parents still weren’t happy even though they’d chosen this ed psych, because they were dead set on me being mainstreamed.

4. Your child is not an extension of your ego. For this reason, they do not have to follow an educational or career path you like. It isn’t their job to make up for your lost dreams.

See also above. From the time I was a young child on, it was clear that, by age eighteen, I’d live on my own and go to university. Interestingly, neither of my parents have a college degree and particularly my mother feels “dumb” for it even though she worked herself up to a management position that usually requires a college degree.

5. Your child doesn’t need to prove their value. They do not need to prove they were “worth raising” by being anything, be it independent, successful, or whatever. If you don’t want a disabled child, a child of a certain gender, or whatever, you shouldn’t have a child.

I have probably said this before, but my parents, particularly my father, seriously think that a child needs to prove they were worth raising by being successful in life as an adult. He didn’t mean me when he said this, “because you’re training for independent living”. Well, now that I’m in an institution with seven hours of one-on-one a day, he obviously does mean me, since the few times I’ve seen him since he’s barely acknowledged me.

6. Love your child unconditionally. This does not mean agreeing with every single decision they make, but it does mean being there for them when they need you. And this doesn’t end when they turn 21. With a few exceptions (an adult child becoming a criminal, for example), parenting is a lifelong commitment.

I am linking this post up with #WWWhimsy as well.

TGIF: A Short But Productive Week

Posted on by Astrid

Hi everyone. Today, I’m joining Paula Light’s #TGIF
once again. Paula writes about this being a short week. I almost forgot about that. I mean, we don’t do Memorial Day here in the Netherlands. We have Veterans’ Day, which I believe is on June 29. However, last Sunday was Pentecost and, as with Easter, the Monday after that is called second Pentecost and is an official holiday too.

My week, despite being short, was productive. On Tuesday, I had a meeting with my behavior specialist and a behavior specialist responsible for a possible new care home (or several, I don’t know). They were purposefully vague about the home(s) this behavior specialist is in charge of. Nonetheless, I think the meeting went quite well.

On Wednesday, I was frustrated all day because my Braille display wouldn’t connect to my PC. I thought the problem was the cable, but it wasn’t. In the end, I found out that I had somehow managed to remove my Braille display from within the screen reader’s settings for default Braille display. My Braille display still doesn’t charge properly, for which a technician will come round on Tuesday.

As of yesterday, I am exercising more than I did last month, because I signed up for two challenges in a fitness app called Challenges. Yesterday, in fact, I burned over 500 active calories according to my Apple Watch. Today I’m not yet there, but I did get in significantly more steps. I don’t want this to become an obsession, so I’m making sure I do other activities too. Like, yesterday I created a polymer clay ice cream cone. I later realized that, because I had used white Premo, it needs to be cured at 135°C, but all the other colors are pretty light Fimo soft, for which 130°C is the maximum temperature (and in fact they often darken at this temperature too). I usually cure a Fimo/Premo combo at 130°C and will this time too, but am pretty sure the Fimo colors will be ruined.

This afternoon, my mother texted me asking whether I’d thought about celebrating my birthday (which is on the 27th). If it’s up to her, she’d like for my parents, my spouse and me to go out for dinner. I discussed it with my spouse, who suggested we go to our favorite chicken restaurant, which is about halfway between my parents and Lobith. Or was about halfway between my parents and Lobith, that is, since when looking it up, I found a different chicken restaurant, closer to my parents (so a longer drive for my spouse) and it turned out our favorite chicken restaurant no longer exists. I’m not yet sure what to do now, but I’ll think on it.

The Wednesday HodgePodge (May 10, 2023)

Posted on by Astrid

Hi everyone. I’m joining in with the Wednesday HodgePodge once again. Here goes.

1. Did you watch the coronation of King Charles III? Share some of your thoughts about that, or about the royal family in general.
No, didn’t watch it and don’t care for the royal family at all. I honestly am more on Harry and Meghan’s side if I have to choose one. Not that I know much about the entire situation leading up to them being the black sheep, but there are always two sides to a family split-up and everyone seems to side with Charles, William and Catherine. Being that I’m old enough to remember Diana, albeit not very well, this tells me Charles himself is far from perfect and he hardly seems to acknowledge it.

2. What are you the uncrowned queen of?
Here at my home, I’m the uncrowned queen of smoothie making. Sadly, the blender died and the staff think a stick mixer works as well (which it doesn’t), so I’m waiting for my benefits to arrive on the 23rd so that I can buy a new blender.

3. In a box of chocolates which one do you usually go for?
Coffee cream. I also love caramel and anything with nuts in it.

4. Something learned at your mother’s knee?
I’m not sure what this expression means, but if it means something I learned from my mother as a child, I’ll go with my love of crafts and simple food prep. My mother would often help my sister and me bake cookies. Though I haven’t done that in years, it does probably translate into my love of smoothie making.

5. “Like mother, like daughter”…in what way is this saying true for you?
The first thing that comes to mind is a negative one: both of us have really poor distress tolerance. However, both of us are also somewhat creative. We also look somewhat similar: both of us are short, both of us on the curvy side, both with dark hair. My mother has brown eyes though, while mine are blue.

6. Insert your own random thought here.
I am currently reading I Want My Daddy, the latest foster care memoir by Casey Watson. So far, it’s good. It has an intriguing twist that I didn’t expect.

Finding My Way #31Days2022

Posted on by Astrid

Hi everyone. The first optional prompt for #31Days2022 is “way”. I thought of several titles for this blog post, but ultimately decided on this one. The rest just randomly flowed out of my fingers.

Only four days before I move to the new care home. I told my mother about it on Tuesday. Somewhat surprisingly, she didn’t react weird to the fact that I’m going to live on institution grounds. Not surprisingly, she did start talking to me about how I might be able to walk around grounds independently then.

I did, indeed, mention to the support coordinator and behavior specialist for the new home, when they came to assess my suitability for the home, that I may want to learn to take a little walk myself on institution grounds someday. Afterwards, my current assigned staff cautioned them against too high expectations. After all, I want to be “normal” pretty badly, but I still remain multiply-disabled in some significant ways.

I know that people who are “just” blind can learn to find their way around institution grounds quite easily. But I’m not “just” blind. For one thing, I am not even sure I could use my white cane in a manner that would allow me to detect obstacles safely, given my mild mobility impairment due to cerebral palsy. For another, due to autism-related executive dysfunction and other factors, my energy level varies greatly from one day to the next. So does my capacity to handle sensory stimuli. Consequently, I may be able to find my way for a short walk around grounds pretty easily one day and get hopelessly lost and frustrated the next.

I remember back when I was in the psych hospital, I voiced a similar wish to learn to take a quick walk around the building. An orientation and mobility instructor from the blindness agency came by, taught me a few times with very limited success. Before she was even finished teaching me, the staff decided it was my responsibility, so no matter my mental state, if I left the ward (even in a meltdown), no staff would come after me. I was then supposed to take my little walk, despite the fact that, in a meltdown, I wouldn’t remember where to go at all.

I know at least here in the Netherlands staff can’t legally restrain you once you’ve left an open ward, but that wasn’t the point, since I didn’t need restraining. Their point was that I was now somehow capable enough to find my way by myself and, if I wasn’t, it wasn’t their problem. This at one point led to my husband needing to drive over from the next town to take me back to the ward.

In a sense, I should know the new care home isn’t like the psych hospital, but I keep getting flashbacks. All I can hope for is that my current staff will do a proper handover.

Gratitude List (September 30, 2022) #TToT

Posted on by Astrid

Good morning everyone! I was up at 7AM today and am ready to blog. Today, I am writing a gratitude list. As usual, I’m joining in with Ten Things of Thankful (#TToT). Here goes.

1. I am grateful I was able to break the cycle of compulsive exercising before it got too bad. Last Saturday, I didn’t meet my exercise goal on my Apple Watch and, now that I didn’t have a perfect month anyway, I was able to let go of the need to meet all my goals everyday and just do what feels good.

2. I am grateful for my health. I’ve been having a sore throat for a week or so. It isn’t bad, just slightly annoying. In this regard, I am grateful I don’t have COVID. And yes, even though I don’t have any other symptoms, I took a test on Sunday just in case.

3. I am grateful for a comforting talk with the manager for my current care home. She was able to answer some of my more important questions about the new care home.

4. I am grateful my husband was content with the new care home and quite happy to see me move in there. In his own words, it is a “significant improvement” over my current care home.

5. I am grateful for muesli rolls. On Tuesday, we couldn’t find anything to eat for lunch that I like, so my staff offered to drive to the supermarket. I chose muesli rolls, which aren’t what I usually have. I am grateful my staff felt that these were within reason so the care facility would pay for them.

6. I am grateful for blueberries. On the same trip to the supermarket, we bought blueberries too. They were still reasonably priced even though I think blueberry season is over here.

7. I am grateful for the support of my staff as I navigate the stress of transferring to the new care home. I still had some worries on Wednesday and even on Thursday after I’d made my decision, but my staff are able to support me through them. So is the behavior specialist.

8. I am grateful my sister reacted positively to me moving to the main institution. She, in fact, said she will now be able to visit more often, as the main institution is close to Apeldoorn, where her in-laws live. She enthusiastically planned a first visit for October 8, the Saturday after I move in.

9. I am grateful for a somewhat relaxed text convo with my mother. I informed her that I’m moving, to which surprisingly she reacted pretty supportively. She did put in a few comments about the possibility that I could learn to walk around grounds on my own (which I might at some point, but it isn’t a given) and that I could help prepare food, but oh well. Both of these comments wouldn’t have bothered me had they not come from her, actually.

10. I am grateful for some weight loss when I stepped onto the scales today. I lost 0.3kg compared to last week, which is pretty much what I’d expected.

What are you grateful for?