I Am Not a Calculation Mistake

Like I mentioned last week, I have been doing a Bible study plan on YouVersion called Hope Heals in the Midst of Suffering. I finished it yesterday and it was awesome. It was written by Katherine, a woman who survived a severe stroke shortly after becoming a mother, as well as her husband.

The plan follows Joseph’s story, the part of Genesis I had gotten stuck on in my Bible in a Year plan. I was glad to read it now.

At one point, Katherine shares that, about a year after her stroke, she is still unable to perform many basic functions. She is still in adult diapers, unable to eat, unable to even lift up her head. Her family is having Thanksgiving dinner with her son, then a toddler. As the family are playing with her son, she wonders if there was a mistake. Should she have died from her stroke?

It was at this point that a lightbulb went off in my head. I, too, have often wondered whether my life is a mistake. A calculation mistake, to be exact.

You see, I was born over three months premature. Officially, I was born at 26 weeks 4 days gestation. However, it is quite probable given the circumstances of my conception that my mother really wasn’t yet 26 weeks along. At the time, 26 weeks gestation was the cutoff for active, life-saving treatment in the NICU.

My parents weren’t even sure I should be treated actively. At one point, when I’d suffered a brain bleed, my father asked the neonatologist what he was doing with regards to my treatment. “We’re just keeping her alive,” he said. He (or his nurse) added that my father shouldn’t interfere in my treatment or he’d lose custody of me.

In 2004, when I was eighteen, this same doctor was quoted in a newspaper as saying that he sometimes meets preemies he’s kept alive back in his early days as a doctor, about whom he wonders: “What have we done?!” I at the time tried to reassure myself that he wouldn’t have meant me. Or would he? I, after all, am multiply-disabled and in long-term care.

The devotional in the Bible plan I was reading continued. Katherine at this point heard God clearly speak: “I am God. I do not make mistakes.”

This was what I needed to hear! I have tried to find my neonatologist on Google several times since that newspaper article. However, I don’t need his opinion. I have talked to my father about his views on my quality of life several times, but it hasn’t helped. I don’t need my father’s opinion either. God chose for me to be kept alive and that’s what matters.

Grace and Truth

Also joining Friendship Friday this week.

Unsettling Dream

Last Monday, I had an appointment with my nurse practitioner. First, I said that I was doing pretty well. This is a big step for me, as I’m not normally accustomed to saying I’m well. He started talking about decreasing the frequency of our appointments and possibly even working towards ending my treatment. While I was able to say that this is far too early for me, at least talking about termination, it all still unsettled me.

I mean, I’ve had my latest med tweak only two weeks ago. Two weeks prior to that, I was in a major crisis.

Honestly, looking at it this way, it seems nuts that he even mentioned terminating. This honestly confirms my fear that if I’m doing well, it automatically means I’ll lose my help. Thankfully, I was able to keep myself from panicking and calmly told him that I’m not ready to stop my treatment now or in the foreseeable future. After all, I still want to lower my Abilify dose and that’d take a psychiatric provider to supervise too.

We eventually agreed on a re-evaluation in December or January and to keep the frequency of my appointments as it is now until then at least. My nurse practitioner already seemed to make it pretty clear he really wants to decrease our appointments by then, but oh well.

The following night, I had my first trauma-related nightmare since going on the topiramate. It wasn’t a direct reliving of a traumatic event, thank goodness. However, my dreams rarely are.

In my dream, I was standing on top of the Erasmus building of Radboud University in Nijmegen, a 20-storey building. Someone I didn’t recognize but who sounded strangely soothing was holding me in a comforting embrace. Then, she said: “Sit down please. I can’t hold you any longer.” Just as I was going to sit down, my right leg slipped and I was standing there with my right foot hanging in mid air. Then I awoke. I immediately realized the symbolism in this dream.

I had the sensibility to press the call button and the night shift came by. Thankfully, she didn’t just soothe me, but encouraged me to actually tell her my dream, which I did. She then confirmed that I’m not in Nijmegen now, but in Raalte.

Needless to say, I’m going to make sure at my next appt, my nurse practitioner understands that just because I’m doing well for a few weeks, doesn’t mean I’m ready to quit my treatment.

Tanka: These Weird Times

Stay silent, listen
Hear the birds’ cheerful chirping
Hear the wind blowing
Hear the music of nature
Despite these times of crisis


I am pretty sure I already published this poem somewhere, but I can’t find it on here and I don’t post my poetry anywhere else. I found it in my Drafts app, which I sometimes use for creative writing. I originally wasn’t sure I wanted to post it to my blog and as I write this, still am not 100% sure.

It may not even be the most appropriate time for this poem. Most people are probably, understandably, tired of the pandemic and want it to end, not be at a crisis point. And honestly, I’m not sure where it is currently. I mean, I saw a headline today saying COVID is being fought well, but the virus fights back. Something like this. Let’s all hope this crisis is over with quickly.

I am using this as an attempt at working the block editor too, as on my iPhone I can of course no longer use the classic editor and the Drafts app works only with Apple devices. I was going to find a workaround, but then decided I would need to get acquainted with the block editor one day anyway. So, well… whatever.

I’m submitting this poem to dVerse’s Open Link Night.

Early Days Online

Yesterday, Rory asked whether we remember our first times online or with a computer in general. I certainly do. I may have shared some of these memories before, but just in case I haven’t, I’m going to dedicate a post to them.

I got my first computer at the age of eleven in January of 1998. That one didn’t have an Internet connection though. Its operating system, Windows 95 SP2 (which my father explained was like Windows 96), did support Internet Explorer, but my screen reader didn’t. That screen reader, Slimware Windows Bridge, was quite primitive. So was the Braille display, which I remember to be attached to my computer via the printer port. Though it did work with just Braille, without speech, if the speech unit in the Braille display malfunctioned, so did the entire thing.

In 2002, I got my second computer and my first JAWS version. For those who don’t know, JAWS is the most commonly-used screen reader today. This computer had Windows 98 installed on it and it did have Internet access.

My father at first was adamant that I use the Internet as much as I want, even though we had a dial-up connection back then (not the kind where you can’t phone and go online at the same time). He said that, if the bill got too expensive, we’d get broadband. Then when the bill did get to over €300 over the summer, it turned out broadband wasn’t available at our house. After a few months of my parents trying to restrict my Internet access and my trying to evade said restrictions, we eventually got cable.

I got my first online diary that fall of 2002. It was on DiaryLand if I remember correctly, though I often switched between DiaryLand, Diary-X, Teen Open Diary and whatever else was available. The only service I never actively used, was Xanga. I also had a Dutch online diary.

The worst mistake I made, looking back, was not taking care of other people’s privacy. I not only wrote out every argument I’d had with my parents in detail, but also referred to other people, such as my teachers, by their real names. One teacher in particular had a rather unusual last name and at one point was googling her name for genealogy purposes. Not surprisingly, she stumbled upon my Dutch diary. Though I (interestingly) had used a nickname there, she quickly found out it was me. She personally didn’t mind, but did caution me that others might.

What mistakes did you make in your early days online?

Five Things I Love About Summer #5Things

Last year, as part of the #5Things challenge, I shared five things I hate about summer. Despite these, summer is still my favorite season. It’s therefore great that today, we’re asked to share things we love about summer instead.

1. Being able to wear more summerly clothes. I usually wear jeans in winter and fall, but come spring and especially summer, I really love wearing skirts and dresses. Recently, I was going to comment this on a traditional, Christian blog only to realize that maybe the author wears skirts all year round out of modesty. This then made me realize that, in fact, at least one of my dresses is quite suited for fall too. Anyway, I totally love the ability to wear looser-fitting clothes. This might again not be strictly summer-related, but for me it so far is.

2. Summer fruit. I love the time blueberries, peaches and raspberries are sold in supermarkets again. It’s totally amazing what a selection of fruit one can choose from in summertime. I also love freshly picked fruits from my parents’ or in-laws’ gardens.

3. Ice cream. I really used to love it when the ice cream truck came by as a child. Last year, an ice cream truck came by my care facility several times. Its owners usually served county fairs, but due to COVID, these were canceled. The truck had an earworm of a theme tune with the refrain of “Si, si, si, si, delicious gelati”.

4. Barbecueing. Too bad my family haven’t done this so far this year. I am a total meat person when it comes to this, although I’ll have some fruit salad too.

5. The sunlight. I love it that the times of daylight are much longer in summer than in winter. This enables me to be outside more often during the evening and also to enjoy more natural light while indoors. Although the sun definitely causes its problems (ie. sunburns), I generally love it when it’s shining. Besides, I’m making a habit out of wearing sunscreen everyday now.

What do you love about summer?

Gratitude List (July 18, 2021) #TToT

Hi all on this beautiful Sunday. I used to have this rule that I had to write my gratitude posts on Friday or they didn’t “count”. Then I would allow myself to post on Saturdays too. Now it’s Sunday. I think it shows I’m pretty rigid with my rules of what is the “right time” for a certain post. I mean, the Ten Things of Thankful (#TToT) linky is open till Tuesday and even if it wasn’t, that wouldn’t be a reason not to publish a gratitude post. Gratitude is always useful, so…

1. I am grateful my family and friends are still healthy and haven’t contracted COVID. Many are fully vaccinated by now too.

2. I am grateful I don’t live in the flooded area of the country, let alone in Germany or Belgium, where the flooding has been much worse. There’s been a lot of outrage at the way the Dutch handle the flood, but I think they’re handling it as well as they can. I am grateful we’ve not had any deaths due to it so far.

3. I am grateful for a sunny day here. Several, in fact. Since last Friday, the rain is pretty much gone out of this area of the country and we’re having warm summer weather.

4. I am grateful my GP took my abdominal issues seriously. Like I mentioned on Friday, I am back on a higher dose of magnesium. Here’s hoping this will work.

5. I am grateful I am still pretty motivated for creative endeavors. I’ve been making some jewelry, lip balm, as well as a melt and pour soap this evening.

6. I am grateful for the ability to online window shop without actually buying anything. I have so much I want to buy once my benefits arrive, but I’m glad I’ve restrained myself from spending any more money until then at least.

7. I am grateful for grilled hamburgers with cheddar cheese. We had those for lunch on Thursday.

8. I am grateful for a short chat with a woman from the care home a few doors next to mine. I mentioned her before, we used to talk a lot at day activities and she’s even had coffee in my room one time. Now due to COVID, we can only meet outside. I am however grateful I got to chat to her again and she’s well.

9. I am grateful my husband came by today. I hadn’t seen him in two weeks, as he had to work last week Saturday. Today, we went to Subway to have lunch.

10. I am grateful I found the Bible reading plan I’m currently following. It’s called “Hope Heals in the Midst of Suffering”. I can totally relate to the plan’s author’s experiences and they are so validating!

What are you grateful for?

#WeekendCoffeeShare (July 17, 2021)

Hi all, I’m joining #WeekendCoffeeShare, even though I already had my evening coffee and my soft drink for today. I think I’m going to just have some water with my late evening medications soon and that’s it for today. However, like I’ve said before, I can always make you a Senseo coffee. I’m afraid we no longer have green tea, so if you’d like tea, you’ll have to pick regular or some variety of fruit-flavored tea. Anyway, let’s have a drink of medicine water for me and coffee, tea or a soft drink for you and let’s catch up.

If we were having coffee, I’d share that I’m still relatively stable mentally. I have been slightly in flight mode, ie. distracting myself from my feelings by keeping busy. That’s okay though if it doesn’t last too long. Yesterday, it had maybe lasted too long and I had a meltdown over a necklace I’d made that snapped just as I’d finished it. I was able to get myself back together though.

If we were having coffee, I’d tell you about the shopping spree I went on at Action, a budget store. I bought another hair clip and some scrunchies, socks, a coat hanger and some other things. In total, I spent less than €10. I also went to HEMA, another large store, because I wanted silicone straws. You know how plastic straws have been banned in the EU? Well, I have never tried drinking from a paper straw, but I’m not intending on trying either. The straws were quite expensive compared to all that I’d bought at Action: €4 for four straws and a cleaner brush.

If we were having coffee, I’d also share I’ve resolved not to make any more unnecessary purchases until my benefits arrive on the 23rd. You see, the €10 at Action and €4 at HEMA were the least of my expenses recently and, though I’m by no means broke, I do want to make sure I stay financially secure.

If we were having coffee, I’d proudly tell you that I made a lip balm for a fellow client. He has Down Syndrome and this apparently goes with chronically dry lips. Last week, I had told one of my staff that I had been making lip balms for myself but would be throwing them out in a while, as they won’t last me till winter and I don’t tend to use lip balms in summertime. This staff suggested I give the lip balms to said client, but I had touched them with my fingers. For this reason, I decided to make a new batch of lip balm while making sure to work hygienically. Thankfully, we have a huge stash of gloves at the facility.

The lip balm still was a bit of an experiment, since I used coconut oil this time rather than sweet almond oil. Other than that, I used the same ingredients I had for my own product: beeswax, cocoa butter and a drop of flavor oil.

As it turned out, the man was really pleased with it. The staff tell me he keeps asking for “his” lip balm rather than the standard store-bought one that he used to wear. I’m pretty sure this little pot will last him several months, but I’m already thinking of buying lip balm tubes so that the lip balm will be easier to apply.

If we were having coffee, I’d share how grateful I am not to live in an area of the country affected by the flood of the past few days. In the southern province of Limburg, as well as in Belgium and western Germany, heavy rainfall led to a lot of flooding. I don’t know the details, but it does kind of worry me. I mean, I was taught in school that climate is something that’s relatively stable over a period of about 30 years. Over the past five years or so, I seem to have heard of more and more extreme weather though.

If we were having coffee, lastly I’d share that the rise in COVID cases also really worries me. Today, there were over 11,000 new cases in a single day. People try to reassure me that they’re all partying youth, but I’m so worried about who else those partying youth might’ve infected. I am not really worried for my own health, as neither a partying youth nor a vulnerable elderly person. I am, however, worried for another lockdown.

Sorry for ending this post on a negative note. I really hope you all have been doing well.

July 2021 Health and Wellness Update

Today, I’m not feeling too inspired to write. However, I said last month that I wanted to make health and wellness updates a monthly occurrence. Here goes.

Last month, I was worried about my kidney function. My nurse practitioner was since able to reassure me it was within the acceptable range. I since have stopped using the Water Reminder app, as it was being a bit of a nuisance having to fill out my fluid intake each time. However, I still make sure to drink plenty of water.

The fact that my kidney function is acceptable means I have been able to start the topiramate too. Thankfully, like I’ve said, I don’t experience any side effects.

I also found out last month that I don’t have a UTI. The doctor still isn’t sure what is causing my bladder pain. I for a while took the max dose of paracetamol plus naproxen twice daily. Thankfully, I have since been able to get the naproxen back to an as-needed prescription.

As of last Tuesday, my magnesium, which I’ve been taking for constipation for a few months now, has been upped. I myself thought I suffered with diarrhea, but my GP was able to see that it was a result of constipation really. I am really hoping this will work.

To be honest, with respect to lifestyle, I’m not too satisfied with how I’ve been doing over the past month. I am still struggling to make healthier breakfast and lunch choices. This week, I started having crackers for lunch, which I like far better than slices of bread. However, we didn’t have those until Wednesday and yesterday, we already had a special grill lunch.

I did make sure to eat some fruit at lunchtime each day as well as some slices of cucumber. Overall, combined with my relatively healthy choices from the meal delivery service menu, I did meet my five servings of fruit and veg each day.

I got weighed in again yesterday and, sadly, had gained 400 grams compared to last month. I am still within the acceptable to me weight range, but I do need to make sure I really watch my diet more carefully over the next month.

Exercise-wise, I’m not doing as well as I’d like to. I would really like to make it to 10K steps more regularly again. I do know the weather hasn’t been great, but I still have the elliptical and can dance in my room. I would also really like to make weight training a part of my routine again. That might take some more time though, as, well, I want so many things.

Overall, I feel okay about the things I can’t control, like the fact that my kidney function is within the acceptable range after all. However, I could really do better on things I can control, such as eating a healthier diet and exercising more.

Mid-Year Reflections

Hi all. How can it be the middle of July already? It’s amazing how time flies. This week, one of Mama Kat’s Writer’s Workshop writing prompts is to look back at your new year’s resolutions for 2021. As I do each year, this year I called them hopes rather than resolutions as a way of lessening the pressure. As I look back though, I seem to be doing pretty well.

My first hope was to eat a somewhat healthier diet. Indeed, I am making sure to eat enough fruit and veg each day, unlike apparently during the last few months of 2020. I however still struggle to make healthier breakfast and lunch choices.

In the exercise department, I’ve not been as inventive as I’d hoped. I blame COVID, as, even though gyms reopened to the public a while back, I haven’t felt comfortable to go.

With respect to getting stable mentally, this is a work in progress. I’ve only actually noticed some seemingly significant improvement over the past month or so, after first falling deep into crisis in mid-June. I cannot say for sure the one-on-one support is helping me get mentally stable, but I do know for sure that I certainly don’t want to go back to the situation before the extra care hours were approved.

Faith-wise, I am still on my journey with God. I pray everyday, read the Bible everyday and am learning to put Jesus first. I am however still struggling. I really want to get baptized, but have no idea where to start, as I don’t currently even go to a physical church. More importantly though, I am still regularly tempted to think that, since God is in charge, I shouldn’t even bother with wanting to be saved.

On the leisurely side of things, I’m doing pretty amazing if I can say so myself. I have kept up a pretty good blogging routine and actually love jewelry-making and bath and body product making again. I am glad I didn’t resolve to be able to do these activities independently, as that’d be an unrealistic goal.

The only area I’m not that satisfied with myself about, is my reading. I did a separate post on bookish resolutions for 2021. I guess I should have called those hopes too, as to be honest, I haven’t really met a single of my goals as of yet.

How did you do on your new year’s resolutions so far?

Mama’s Losin’ It

No Shame in Hope

I have been wanting to share more faith-based posts for a while, but didn’t quite know where to start. Today, I read the second weekly meditation in Hearing God Speak, an enneagram-based book of devotionals by Eve Annunziato. It is a meditation on suffering and the everlasting presence of God through it all.

“Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.” (Romans 5:3-5 NIV)

I have known this passage for several years, even before I became a Christian. I have probably written about it before. After all, the fact that suffering produces perseverance, really resonates with me. As Annunziato points out, enneagram type fours like me feel most alive when we dwell on our feelings of pain and suffering.

As such, Annunziato challenges us to move towards praising God and seeing His presence in a new way. As such, the line about character and hope is more important to us Fours than the line about suffering producing perseverance.

I don’t think I’ve ever even seen Romans 5:5 and that verse in particular speaks to me now. I, after all, often fear joy and, by extension, hope. I am not yet sure what it is about joy I fear, but it might be a feeling of being less alive if I’m not suffering.

God’s love, however, has been poured out into my heart through the Holy Spirit. This is something to rejoice over, not to be ashamed of.

Indeed, it is interesting that Paul uses the word “shame” in this verse. I had no idea it is this emotion I often feel when I’m hopeful or optimistic, but it is.

I mean, even when I’m doing pretty well, I still say I’m doing “okay”. I remember a fellow patient in the mental hospital did the same and he did this so the staff wouldn’t think he was well enough to be discharged. I didn’t consciously do this, but on a subconscious level, I probably did. And still do, despite the fact that there’s no reason I’ll ever be kicked out of long-term care.

Honestly, there is nothing wrong with feeling hopeful, joyful and optimistic. In fact, it is what God is wanting for us in His honor. For this reason, Annunziato encourages us to praise Him even in the midst of our suffering! Because suffering produces perseverance; perseverance, character; and character, hope. And hope is nothing to be ashamed of, because through the Holy Spirit, God’s love has been poured out over us.

Linking up with Scripture Blessing, Let’s Have Coffee and Recharge Wednesday.