Author: Grace by any other name

First Part Typed Saturday Night

It was just lunges. That’s all I did before I ran out of breath and couldn’t continue exercising. Never in my life have I huffed and puffed during lunges. And I was only holding 3kg dumbbells.

It is frightening.

I even used my inhaler. But my lungs are still sore and I still can’t breathe well yet I’m sitting down. For months now, I’ve only been able to do six lunges per side. I have to strengthen my muscles. Not only because it’s necessary post menopause anyway as we lose muscle. But also because our AS bones need our muscles to not die while our skeleton does. Our bodies need all the support they can get.

But my lungs don’t want to play ball. I’ve slowly been noticing that my normal isn’t actually normal. The breathlessness I’ve experienced in the past few weeks that leaves me unable to finish a sentence or even a word isn’t temporary. This might be the best I can be. And that’s terrifying. Until my lung function test, I’d been ignoring the sudden inability to finish my words or run out of air at the last word. But yesterday I couldn’t.

I have a Bible story channel for children. It’s low stimulation, slow and steady for neurodiverse children like mine, but there’s an older girl at church who wanted me to never stop. I make up tunes for new Bible verses and yesterday, I couldn’t use the tune and beat I planned because I ran out of air before the first LINE. One little line defeated me. So I slowed it down so I could breathe halfway.

This cannot be happening. This cannot be my life. Rinvoq is finally helping my AS but my lungs, which the pulmonologist had assumed would also play ball when the AS slowed down, instead sped up. Oh, I didn’t blog that part, did I?

I went for my lung check and yikes, for example. My lung diffusion capacity had been at 17 which was slightly reduced. And then the following year it went down to 16. But now suddenly it jumped down to 13- “severely impaired ability for the body to pass oxygen from the mungs to the bloodstream.” I can’t recall the other value that also went down. But it also went down quite steeply. He didn’t give me the values.

So there we are. My lungs are misbehaving. I emailed the pulmonologist today. I asked if there’s anything we can do to ameliorate the impact of the progression or I should deal with the shorter breath. It’s only when I’m doing prolonged talking. Like when describing what a child did during a normal conversation. For children’s videos and adult videos, I talk deliberately slower, so it’s not pronounced.

I did ten lunges before I ran out of breath. Instead of celebrating that, I’m lying on my bed so the rib pain, a dizzy head and worry. And yes, I exacerbated my bone pain but that was a small price to pay.

I cannot believe this is happening. I thought my numbers would be higher! I imagined him telling me I’m now normal! At least stable! I keep thinking it’s temporary. A sharp decrease isn’t a sign of something temporary, is it?

And the worst part? My lungs remained painful throughout the rest of the appointment after my lung function tests. That had never happened before! Never! Progressing is not a good word when it refers to how a disease is moving.

Sunday afternoon now…

I had a look at my dear Amarissa’s OT report. I’d asked for them all to be assessed as the OTs had not given me any inkling on what they’re working on and I need to know what I’m paying for! I figured if they assess, they themselves have clear guidelines and know exactly what areas they should work on.

Hers was the first to come in. It is painful as a mother, to see your child sliding backwards in some respects. How does that even happen?? Why? Is it a permanent regression? And what about the ones where she didn’t improve at all? Thankfully she has improved in some areas, but only by the number of years that have passed since the most recent assessment. So when she was bine years old, she was testing at a six year level and now (for some) she’s at an eight year old level at age 11 years.

I just found myself so overwhelmed. Why does this mean? Her visual processing is as bad as it was three years ago. NO IMPROVEMENT! What is the point of ‘therapy’ when it’s not showing that it’s therapeutic? Why pay the fees and the fuel? And if she’s got so many foundational skills not where they should be, why continue with academics? Should I halt it and only focus on fine motor skills, strengthening her trunk and fingers? Should I only focus on executive functioning skills like thinking and planning? Should I only use my textbooks and forget about her textbooks? But then if I do? Her Maths and reading deficits will continue to be stagnant. But they can’t improve if she can’t see clearly anyway!

I feel stumped and sad. She can’t recall suffixes and prefixes.. the terms mean even with words that contain different types. Yet we’ve done them for a long time. And contractions. Should I even bother with that given we already know from her psych report that she will never be academic? I don’t know any factory workers who need to know grammatical contractions. Should I dump grammar completely and only focus on literature and the sciences and practical skills?

My mind goes round and round all on my own. It’s so heavy. I don’t want to shortchange her. But I don’t want to cause a breakdown over something she won’t need for whatever vocational stream she joins. But what are the options??

And that’s the other problem. I can’t find any vocational high schools that suit her. No neurodiversity profession can think of any except some high school that does more dancing and acting than what I’m thinking of, which is, building practical skills for a job one day.

And today, she’s having a very bad day which means I’m sucked into a dark malaise with her. An all day tantrum and the day is not over yet. I am worn out. How can I help my poor daughter? She is miserable, I am tired. My head is aching. My eyes are too dry for my contacts but my glasses are sliding down my face from the sweat (It’s hot)

I wish I could fix all the parts that make all my children struggle and suffer. I wish I could fix my own skeletal system and muscles and organs. I can’t and so I continue having our 11 year old assessed. This week she will be seen for an hour, and then I will meet a record four to five hours to answer questions that assess if she does have autism and PDA.

Then we discuss how to help her pharmacologically with her PMDD symptoms.

Hmmm! I don’t even know what I’m praying for anymore when it comes to myself and my children. I can hear my non speaker building up to a huge meltdown as I type. I just keep asking God to help me. And so far, I haven’t died. I haven’t had a paralysis stroke. No heart attack. So I guess He’s helping me.😅

This has been a way too hard on this body week. Not only am I still teaching even though I’m not supposed to be, but our non speaking angel was extremely absorbed in making me work my broken body.

She’s crushing me here. Lying with her substantial amount of weight on my lap. Add all the sitting I’ve had to do as I drive to various appointments, sit for various appointments, and still have to do today as we once again try to get my now 11 year old Amarissa assessed, and I’ve struggled with pain.

Also, it’s the mental strain. It is constant and ongoing. I get no rest. My children can’t just live a normal life and play typically. Normal is boring for them. They can’t play together or read for longer than 5 minutes before they either need a referee or they come wanting something from me. Always wanting something exciting aka expensive to eat or play with. And when you are in pain, you just want to be left alone to rest. With our unpredictable and violent and ‘screamy’ non speaker, I live on high alert

Alright. Now let’s move onto the afternoon of today. This post has been in the pipe works since Wednesday!

AS and sitting are not friends. I’ve taken the children for their annual weigh ins and medication reviews. We’ve added new ones here and there and sitting in the room was bad. The eyes, the mouth and throat theat become parched sooo quickly. I’d forgotten to carry water. But I also had moments of levity.

The paediatrician told Ms Talkative Twin, “Ok, Naynay, I’m going to put this here on your chest, ok?”

She replied, “Yes! If you don’t use a stethoscope then you won’t be able to hear my heart!”

😂😂😂 Busy telling her he’s using “this” when she knows full well it’s a stethoscope. He took them out his ears and said, “WHAT!?? Say that again!!”😂

While we are on the subject of Little Miss. One of her reading words for school was “globe.” She then asked for one. Could I say no when it’s educational?

She’s holding magnifying glass to it so she can read the words. That thing went everywhere with her.

Time to eat? Yep, it’s coming to join her.

Time to sleep? It’s going to bed in her room.

Globes are conversation starters…

Globes make us proud of how well our little sister reads…Globes are the world!🥰😉

And then we go back to our gripe. The pain. The sitting and the talking. I want time alone. In peace. No talking. Sitting. Just peace and quiet. I can’t wait for tomorrow where hopefully I will get it for 20 minutes or so. I can’t wait to just be. But before we talk about just being, we go to the sitting.

Today, I went to the introductory appointment for Ammy’s autism with PDA assessment. It was hell. Stupid mouth and throat drying up, pain and no escape. Bone marrow edema (swollen bone marrow) is really painful to sit on. Who knew that putting pressure on bones that have internal contents putting outward pressure on them would cause excruciating pain? And then she said she believes Ammy has PMDD. I’m embarrassed to say I had no clue what that was. But it describes my poor girl perfectly.

This is our girl to a tee. No wonder she was begging for someone to stop her cycle from happening. Though I too was begging internally. My poor girl cannot focus for school at all. It’s like she’s drunk. She sees words to at aren’t there, can’t recall what she has just read. It’s a waste of time as she is completely blank. And the rest of the symptoms speak for themselves. She’s the overrated type. And oh my, the conflict spreads everywhere and is poisonous.

And yes, we are right there in that phase right now.

As the psychologist who will be doing the assessment asked for background, all the other children’s challenges and behaviours, my homeschooling, she commented, “I see you laughing and smiling and speaking with such grace and poise, but there is no way this isn’t heavy. Special needs children are a terrible strain. You must be feeling it, aren’t you? Are you masking?”

I looked at her and thought, “And you don’t even know that I’m worried about my failing lungs, painful body as we sit here and you see me shifting around…Just parenting these children is heavy. Add parenting when you yourself need a parent to nurture you, and I’m only one step away from a mental breakdown. I cannot do this much longer. I need serious help and a break. A proper rest. Time to just be by myself. To read for myself, not for curricula and special needs. To rest my brain.” I never thought of it as masking. Masking was for autistics and ADHDers who pretend everything is ok but inside they are barely holding on. Am I masking?🤔

I can completely understand why overwhelmed parents just choose to leave this world with their children. This world isn’t made for us. It’s isolating and lonely. Depressing and tiring. Nerve racking and heartbreaking. The funny moments don’t erase the daily and nightly grind. It’s hell. I believe God will understand those parents who couldn’t live with this any longer. I will never join them, but He knows the pit of anxiety they live with every moment. And so yes, I was laughing and smiling but it’s not funny. I just have no choice.”

She has PDA herself and sees herself in the things Ammy does. So who knows? We might finally be on the way to a diagnosis that will help us help her better. And..I will need to sit through a minimum for four more hours long sessions. I am distraught. I have suffered so much this week. To know I’m far from going back to ‘normal’ pain is horrible. But a mom’s got to do what a mom’s got to do!

I have to. For these very needy angels who expect me to fill their every spare moment with new toys, new treats to eat, glue that’s running out fast, sellotape, markers Ammy leaves to dry out as she doesn’t out the lids back on.

If I could clone myself, I’d go out myself in a psych hospital and rest my mind and hospital. But I can’t. So I will end with this.

On Sunday, my ten year old son gave me a gift. He’d told me he was making me a gift when he came to ask me for sellotape and a box. Inside was a letter I could actually make sense of! In October last year, even he didn’t know what he’d written in a card to his sisters on their birthday. Here we are in February and my son’s note clearly said, “Dear mom. You are the best in the world. I love you.” Well, include the spelling errors he’d made🥰

He added this Woolworths brochure (seen above) from last year November and told me I should look at it and buy myself “anything” I see inside.😂🥰🤔

That was definitely a thought that counted, and then some! Don’t let anyone tell you autistics are selfish or self centered.

I’m in the ‘severely impaired’ level of my long diffusion capacity and my blood oxygen continues to drop. Both dropped at a much steeper rate than they had before and it terrifies me because I gave my best. I went in hoping for a stable, or even a “Your numbers are normal now!! Instead, they were so bad that they thought I needed more attempts to get re-used to the testing but all that did was cause pain in my dry throat and chest. A pain that took very long to dissipate.

We live in bad times. Diseases increase instead of decreasing. Challenges become harder instead of at least staying stable. And money rules the world. I found a perfect place for the three children to go do some movement activities or art but the prices were too high. I haven’t heard back from the homeschool mom who was offering free dance classes… Anything to use up their energy just a bit. In my absence. Let’s see what happens in the future! For now, I plead with God for a better and longer chance to just be me. To rest my bones and my throat and mouth. To bask in His love and have nothing interrupt that communion.

One day!

And yes, opthalmologist confirmed my ‘very dry eye’ and suggested plugs to put into my tear ducts that drain out so that the few years I make don’t drain out. And the rest was what I knew -drops, ointments and gels often throughout the day to avoid damage on top of the discomfort of dryness.

Haha, I have a Sister In Suffering, who regularly asks how I am, children, just life. But then said yesterday morning, “I’ll go read your blog so you don’t have to repeat yourself!”

(Note. I typed this LAST WEEK but life got too busy.)

Now now, that’s putting pressure on me to actually take this seriously! I can’t use the blog to say how I am and how my morning started. People would be bored silly reading about the day’s ups and downs. Especially as there has been more down than up given we are a special needs family and all my children seem to have executive functioning disorders! I mean, come on, my daughter who turns 20 this year didn’t make a plan to get to class when she realised the car battery was dead. No Uber, no calling the insurance guys to do a free jump start. She just reported to me while I was busy downloading videos for her siblings, and getting ready to take her non speaking sister to her annual check up!

Who would want to read about THAT? Only friends who know me and care. And that, I’ve reserved for WhatsApp as well as other “Ugh” parts of the updates they ask for about my stupid body or side effects of stuff.

So what is this post going to be about? My daughter. My non-speaker who kidnapped a giraffe yesterday. I asked her big brother to come with me for her annual check up appointment. She has never lasted an entire check up. And she didn’t. She wanted to jump of the bed when her BP was being taken but had stood on the scale for the first time, so we had a win of some sort! I’ve practiced having her stand on our scale before but didn’t think it would transfer to the doctor’s room! She stood still till she was told to get off! Well done to her!

But then she was done! Toys in the exam room notwithstanding, she was done! As the doctor came to sit down to talk with me, she was pulling me to stand up. “Car! Car!” She insisted. So I told her brother to take her and the giraffe she’d found in the waiting room basket out. But when it came time to put the toy giraffe back into the basket in the waiting room, I heard the most awful screams! I felt bad for everyone else. Then she stopped. I was surprised. When she screams like that, nothing will calm her at all. Nothing. She then screams for up to an hour and a half.

Turned out they’d felt bad for her, so the receptionists told my son to take her and the giraffe. No wonder the screams had ended so abruptly!

We did something I never thought I’d do in all my 22 years of parenting. I agreed for the paed to apply for a government school for her on the education department website. Her father had said the very awesome government special school my rheumatologist had asked at, was not “good enough” for her. Go and google Cheré Botha school in Durbanville and tell me if it looks awful 🙄But he’d never bothered to come up with a second option. He said the private school was too expensive. And that was it. I was meant to keep suffering, straining my body till it wears out prematurely and I die. This is when I knew for sure that I never mattered. When you love your wife and her doctor has even searched for schools for your children, you know she’s truly suffering and needs as much physical and mental rest as possible and you will provide it.

But he’s not a provider nor love-er for me anymore. Only for his Sandton floozy. And so, I am providing helot for myself. And that is freeing. They had different levels of disability to choose from on the website so they place your child in the most suitable school, with the more able further down the list. She was at the second bullet point. Can understand one or two word instructions. The third option was that they can follow instructions like THIS. “Can understand when you say take off your top and put it on the bed and will do so.”

It felt weird. I am still sure I love homeschooling. It’s the safest in all aspect. But it’s not good for my children who need as strong a mother as possible. And I will still have a long wait anyway. Last I checked, waiting lists for special schools were two to three years long. We still have a long wait ahead of us. For her, and for her brother.

I don’t know how to quantify my 10 year old child’s intellect. I don’t know how to show how illogical he is and how tiring it is to have to explain multiple times in different ways. To have to answer questions that not even a five year old would ask. (Why did the man wear that outfit in the music video?) Umm, because he wanted to??

Today’s one was at the lift. We were going to enter the Ground floor hospital lift to go up to the first floor where the paediatrician is. There is no basement. There is no “lower ground” floor. There is no down and no down arrow. Just one arrow. We arrived at the elevator and I asked my boy to press the button so we can go up. He had been acting nervous so I wanted him to feel empowered or able.

Except, he looked at the ONE AND ONLG button and asked, “Which button? Going up?” It takes a lot to not be “Duh? Which one do YOU think?”

We – Paed and I -put him on the WCED special waiting list too. Again, just me, myself and I making that decision. And as I said to a friend of mine today, “Divorce will wipe us out financially. (Two households single income and a sick disabled mom with special needs kids and all needing medication including the older two) So I have even less of a reason to use private schools given how much more expensive they are than government schools.”

The Durbanville government school charges R1200 per month. Private you’re looking at MInimum R6000.00. I will need the ‘change’ for when I’m free to be me, Ms Refilwe- Rose Tsukudu. At least informally. To change officially means my changing my identity for my ID, medical aid, doctors, therapists..and having a different one to my children.

In the meantime, here is our latest therapeutic toy. Both twin girls just go and sit and look at it.🥰But sometimes talkative twin also plays with it.

I’ve been making many choices and decisions on my own as the only one who knows my children’s needs and strengths and weaknesses. The most significant has been signing them up to get government education. Significant because I always thought I’d homeschool all my children forever, but here I am hoping to only teach two, and because it is for my sake because their father doesn’t care about my ill health at all. All her cares about is image. And image means private schools. But his bank accounts don’t go that far. I’ll solve my own problem instead of relying on a hard hearted man, expecting empathy and concern from someone heartless unless it’s about his mommy.

Now if only I could move OUT too!

I might as well do a whole new post instead of adding to this morning’s one.

Well, I’ve received my reply from the rheumatologist. She too is suspecting Sjögren’s disease so I’m at the pathologist’s waiting for my blood to be taken. Ahh, the joys. I’ve made an appointment to see the opthalmologist this coming week as well. I do not want to go blind. I do not want to get lymphoma or any other cancer. I will book my pulmonologist appointment now that the children are not here and needing my attention.

Sitting in a pathologist’s waiting room is very funny! I felt sorry for a couple before me. The husband had a vasectomy done three months ago and it was time for them to test a semen sample to check it worked. So he and his wife done the deed but then he did his deed into the specimen bottle. And they took it to a lab. But then they said they don’t do semen analysis. They came to the lab I was at. But they were told they don’t do it either. So now, the semen was too ‘old’ for testing. The receptionist found a different branch and had to make appointment for them and she asked if they’d have intercourse at home and then hurry to the hospital where the pathologists are or do it there at the pathologist…I wanted to shrink for them in case they felt embarrassed. The receptionist was feeling bad that she had to ask all those questions with me there waiting.😂But they needed to book a specific time to bring the sample in. So now they also had to figure out if they’d manage to wake up early enough to do it but also not be so early that they hit traffic and don’t make it on time…I know the procedure cos he did it too so I almost shouted that they must not stress, I’ve been there, done that.

And then, because of traffic and the available time slot, they had to start all over again phoning and booking at a different place and answering the same question. I know their surname thanks to that! And what they’d done this morning. Hilarious. Everyone was laughing because where they fest our blood is so open and the rooms so small and just curtains divide the little spaces.

So now we wait. Please don’t let it be Sjögren’s.

A recap of my talkative twin’s verbal feedback from the educational psychologist… Confirmation of what I’ve known. Level one ASD, PDA, ADHD combined type, hyperlexia and highly gifted. She was testing at two years eight months better and at 97th percentile cognitively and academically!!

Her only hold back is her medication! I’ve BEEN saying that! I’d already asked the paediatrician early last year to raise her ADHD meds! Her processing is BAD, 6%. And motor visual skills are worrying so I’ve asked the OT if she’s included assessing visual motor skills in this current set, if they have been working on it or not, so we can see if she’s progressed since she started OT or not. If not, then she will be child number three to need vision therapy.

The other negative is the same as Ammy. Emotionally, she is very hard on her self. She feels like she’s doing badly even if she’s not and wants to be able to do ‘everything’ even things she isn’t meant to be able to do anyway. Very true even at home. She puts way too much pressure on herself. And when frustrated she did mention that she throws things. And hits her poor sister, Ammy!

The last average skill is auditory processing. She sees and recalls much better than she hears and recalls. So that’s another area to work on. I did figure that out because of her struggles with isiXhosa and Afrikaans. She cannot hear the sounds and with isiXhosa she can’t even tell that she can’t make a click or that she’s making the wrong click.

A funny one was how she hadn’t yet learnt that ‘oh’ makes f sound. So she asked the psychologist why in the world photograph is spelled like that. Then she said, “Ohh!! Like Pharaoh!”

She is also very nurturing and caring. Very sociable and actually too sociable and needs to learn not to be so open and loving with people. Very worried about my being sick.😞Wants to take care of people. Exactly what we see here at home. She even told me the other day, “Here are some letters we made for you! Mickey’s doesn’t look so good and I don’t know what it is, but I told him he did a great job! I don’t want him to feel bad!” My heart!🥹🥰🥰

So man, if we work on her visual eg. Skipping down to a different line instead of completing a line when reading, upping or changing her ADHD meds, so she can focus, we will be doing super! I’ve never had a gifted child before. I do know they need extra so they don’t get bored! That’s why she keeps telling me “it’s ok” that the “maths is too easy.”😂🥰

There’s more that I can’t recall that I told my friend just now who asked how the children are but these are the things I recall. I began typing before she asked me.

Regarding performance, she also did the same as she does with me for school. She got up and was pacing up and down, flapping her hands when excited, spinning and dancing BUT still focusing on her work despite all the busy-ness. I love it. She does so many strange things like getting off her chair and sitting on the floor, or singing her work or facing the back of the chair with her legs over it! But she is still working!

I’m so relieved. She will need extra time and struggle with high pressure things like exams, because of the pressure she puts on herself to be perfect, but she is super intelligent!! Highly gifted! Just like Vi and I have BEEN saying. And that means, more opportunities for her future if her ADHD doesn’t trip her up.

As the educational psychologist said, if she was someone else’s child, because she’s so clever, she’d have burnt out around grade 4 when she usually sees them, been told she has high anxiety and then been diagnosed as autistic at age 40. And then all the masking she’d have done and having to handle the mental load of being autistic while people assume your brain is neurotypical like theirs and so they expectations are high would have burnt her out. Nobody would have known she has sensory issues. Nobody would understand how desperately she needs her bunny to soothe and regulate her so she can focus on her work…

I will buy a weighted lap blanket for when she’s doing school. ADHD is hectic. Hers is severe. BUT, her cognitive skills will help balance it out. Like when she takes a while for her working memory to work for memorising counting in two’s, so I bought a poster with the different types of skip counting and she looked at it, sang it and then randomly recited the numbers to me, telling me she had been practicing them all along. The recommendations for that were what I’m already doing so it’s going to be cool!

It’s weird, coordinating with these people all on my own. Going to do blood tests with only me worrying about myself. But my sisters are just a voice note away and we will carry each others’ burdens.

Have a lovely weekend, all!

My poor girl had the same issue with starting a new grade level yesterday morning. Grade 2 Reading (Literature) and she panicked just looking at the first page.

What the OT is seeing during assessment is exactly what I’m seeing with her school work. It’s a mix of both so you can’t even tell her, “No, don’t worry, it won’t be difficult!” because it very well might be. It does make me worry even more about her skills. Or rather, her future.

Before the appointment yesterday, I’d told them how she feels bad she’s not at grade level but at the same time is not doing great even now. We’ve been doing contractions eg. Will not to won’t for ages but she doesn’t remember the term even though every day the book asks her to “Correct these contractions” or match the phrase with its contraction…” Same with prefixes. We’ve been doing them and she knows how to find the root word, but she freezes when she has to tell you what it is. And she gets it wrong. It’s like her brain is a sieve and information falls out with only remnants left. I see it often with Zulu words. She asks me multiple times over multiple weeks, what a word means. I don’t know how to make things stick.

I don’t know how their brother did with his part of his assessment with his occupational therapist, but Twin A did wonderfully. She told me as soon as they got back that she tried her best to remember something and she actually DID! She did “an amazing job!” Which was confirmed by her therapist.😊I wish I could share her abilities and confidence with her sister. My boy is relaxed though he thinks he has better skills than he has.

You just want your children to be ok! You want them to have a bright future. But it’s becoming dimmer and dimmer for my 11 year old and I wonder what that report will say. Last time’s was already sad enough with her emotional age so much younger than her actual age which I still see today. It’s more that her challenges hurt her emotionally. That is the part that makes the heart ache. And I can see we will have a lot to take in when they’re done with their assessments.

Another night with multiple wake ups, night sweat and pain, might as well type! I’ve noticed that my mouth dries up when I talk. Doing videos is becoming frustrating. Mouth closed, not as big a problem. Why?

My friend’s question made me put all my symptoms together and do a search. It’s all still pointing to Sjögren’s disease which I really hope it’s not! I went to a support group and oh my word, I see why Venus Williams had to take a long break from playing. And also besides age, why she is struggling to get as close as she used to get.

The sore throat I get when I breathe in deeply is just the start! It’s now sore on one side especially and been sore for two days. Your throat can become so dry that you choke and die cos you can’t swallow! What????? Heck no! I already have enough throat constriction worries with AS! So they go to their gastroenterologist for him or her to stretch their throat every few years. 😩They too mention how if they keep quiet, their mouths don’t dry out as much! Just yesterday, I was struggling with my upper lip joining my lower lip in dryness and oh my, their lips crack and tear!! I’m already taking the suggestions and using them. One has been a failure. I’ve been using it already for my horrible lip. (According to my mother and shop workers who ask why it’s so dry.)

And that’s the other thing. Everything goes dry! This disease impacts every single moisture producing gland in the body. It’s good my husband stopped being a husband in every sense when he got his floozy and became her sugar daddy. Cos no way! Menopause already caused problems.

But it’s scary, the same issues I have with my lungs- the fibrotic bands and scarring- happens with Sjögren’s disease too. Kidneys, lungs, heart… And what did I recently say about fearing lymphoma? It increases the risk and lots in the group already have it and have gone on chemo for it. Others had lymphoma before they were diagnosed. And others are currently in treatment. What life is this when every autoimmune disease raises cancer risks? How do you relax when you’re already on high alert due to caring for special needs children, sickness and pain and now have to worry about your AS treatment and side effects and impact of the different diseases I have?

But, I MIGHT have a reason for how slow the rheumatologist has been to respond. I’m hoping so at least. Though your blood test can be negative for it – which my blood was for AS- you have lots of tests. Pulmonologist -already have one and annual tests. I didn’t go last year. I am bad. I will make an appointment as soon as I return from Twin A’s educational psych feedback appointment this morning.

You also have a opthalmologist to test your eyes’ dryness and treat them. You get cataracts so he will then do surgery. You have damage from the dryness which he treats too. Like the scratch I got on my cornea one night.

And the lip! A dermatologist ignored me years ago about the lip. But what if it’s not psoriasis but Sjögren’s? It can start like that and stay as the only symptom for years because Sjögren’s is a slow disease to form.

And one of the scarier tests is the lip biopsy. They need to cut the inside of your bottom lip and pull out salivary glands to check how they are working. Stitch you up and off you go. Inner lip. Remove salivary glands. Nooooo!

Maybe she’s putting together the testing? Maybe she’s on leave.

I am hoping she or the GP if I get no response today, will diagnose me based on symptoms alone. Please!! I need help. See ya later!

Am I in pain in my hips and lower back because I exercised too much? Or is it because I really do have Sjogren’s? I emailed the rheumatologist yesterday because of how severe the symptoms have become. I noted all the symptoms I shared here, including how when I eat, I feel full way too soon and I get abdominal pain, and told her I was emailing because I had been trying to breathe in to do one of the AS exercises she’d recommended that tries to keep your ribs from fusing so you can’t breathe well, but the throat pain was unbearable while trying to breathe in. This dryness is now too extreme and my bone pain is increasing – which happens with Sjögren’s too as it impacts joints. How fun. Just when we get a treatment working to slow AS down, something else pops up.🥹

And just a few minutes after I sent my desperate email to the rheumatologist, my friend asked me how I was doing. When you’re used to constant pain, don’t feel like the world revolves around you, you constantly ask what state your loved one is in. Within the span of a day we check on each other twice. Wanting to know how the day began, and it has unfolded. Asking about triggers that could have increased pain ( my method) and her asking straight out how the day went.

And it is GOOD.🥹You know I have even had to take myself to the Emergency room at least twice that I can recall. And was bad enough to need actual treatment each time. He refused to take me and never checked how I was. He never checks how I am. One time I was trying to life up a container of water I’d been using to try deal with the foot pain, but bending is a killer, and lifting it up made some water spill and it was HEAVY. He stood right there in the room and didn’t offer to help. Another time, when my hot water bottle burst and I had to take the entire bedding off, again, no offer to help even though he knows doing bedding hurts my shoulders and back. I was on my own, in horrible pain as it had been in the evening when AS pain builds into a crescendo.

I could go on and on about the emotional and physical neglect I’ve had but you see, it makes both of us even more appreciative when we get the opposite. Just a simple thing like her telling me she liked a dress I was wearing in a video. Her telling me I’m beautiful. Her thanking me for the work I’m trying to do on YouTube to prevent even just one more girl trapping herself in our situation🥹And she has the same reaction when I praise her. It’s so rare it makes you emotional. I used to state on my status how kindness always makes me cry. It’s being cared for when the one who had vowed to care for you, only cares about himself. It’s the loneliness and pain of having an adult who doesn’t care, doesn’t see you yet you poured yourself into them and you see them caring about others.

Life is beautiful when we love from the heart. I posted a video yesterday on how my church is supporting me since revealing to them what my husband has been doing since 2022 and is cheerfully continuing to do. I didn’t mention the one lady I thought of as a friend. We’d both shared how neglectful our husbands are over the years. How they never ask how our appointments have gone… I told her I’d just discovered my husband has been unfaithful again. Her reply? “I’m sorry, sis.”

Then she acted as if I’d said nothing thereafter, messages came of, “How is everyone?” Or “How is the family?” The usual messages she sent asking how we are. But there is no family , there’s a man living his life, a single mother. And I hate that she doesn’t see that. I know she didn’t marry for love, but surely even so, you’d respond with better, more empathy?? So I told only a few directly after that. People I knew would be safe. And they haven’t disappointed. One is one l mention in the video.

So, as I wait for a way forward regarding the body that’s dried up and is in pain, I look back at the terrible night. Eye pain woke me at 2am and kept me up for three hours after I put eyedrops in. Throat pain too remained and I started wondering if it’s not the dryness but the children’s awful virus they’re battling because it began with a sore throat. And after making my trek to the toilet, the bone pain hit hard.

But I went through that with a sister who is in a different time zone. And no, never minimise your pain. I already know you care and see me! And that’s what I love. The way love reciprocated. That is good enough. I checking on you and you checking on me already shows me you see me! But I will say that it is noted because so many complain about two weeks of something I live with daily and act like they don’t KNOW I live with it daily and there’s no cure for mineZ I appreciate every word, even the unnecessary ones. But it sounds self deprecating. And she already has THAT in her husband already.

So, to the readers what does it mean for you? What can YOU do?

Please, I beg. Find your friends whose spouses are neglecting them and pour love into them intentionally. You will go far into healing wounds and showing them how God sees them.

And this is your random modest workout outfit photo, and my children’s sun protection modest swimwear.

Guess what I did! The AS exercises are to try reduce stiffness, try stop your bones fusing in a hunch back position, try stop neck from fusing in a curved position, to stop your living with ribs closed as already mentioned, and building muscle to undo how AS causes muscle atrophy and to help support our dying skeletons better. One is a glute bridge. I added weight to it. I feel sooo rich.😆

And random!

Take care!

Good day, Shabbat shalom, hello! Trying to sound cheerful because I’m not feeling it! Fake it till you make it, right?

Instead, I’m feeling sick and uncomfortable and sad and slightly worried. But let’s begin with the first small drama of the day. Last week, Ms Talkative Twin cried and cried. The first thing she had asked me when she saw me after she woke up, was if she will grow up to become an animal. Preferably a cheetah.😩My “No, my Angel, you’ll always be a human.” Was met with angry disappointment as if I’m the one who decreed that humans be human! Not my fault!

Today, the drama of the morning was that her twin got into her bed. How dare she? Forget that she was out of it and meant to be getting dressed! She wanted her sister out.

Yes, she always covers her head with something. Duvet cover, comforter, since she was a toddler, she used something on her head, to soothe her when lying down.

Let’s go to me. Awful abdominal pain. I don’t know what it is. It comes and goes as if my intestines are twisting.

I don’t know if I have joined the group of AS patients who also have Sjögren’s syndrome (another autoimmune disease commonly occurring in women with Ankylosing spondylitis) or what, but the dry mouth, throat and eyes are bad. When my eyes become too dry, I start not being able to see properly, when I don’t drink within five minutes of my last drink, my throat starts to hurt from being dry. Like the walls are sticking together. My mouth and teeth feel scratchy and teeth feel like they have a thick rough layer, and I feel like my eyes are heavy and they too become scratchy if I take a while to put eye drops in. You can imagine how awful I am during the night when there are no eye drops and no drinking water every five minutes. One time in my sleep, I tried to scratch away the sandy feeling in my eyes and scratched my eye. You can imagine how the pain shocked me into wakefulness!

Pain, eyelids heavy… it’s disconcerting! Sjögrens apparently more common in AS patients with interstitial lung disease. Me. Great.

I’ve just checked. Sjögren’s also causes dry gastrointestinal tract too. And can impact the liver or pancreas. What if these symptoms are all linked and I’ve been complaining about weird IBS for the wrong reason? And like all autoimmune conditions, there’s no cure. Just keep treating it the way I’ve started. Eye drops, dry mouth capsules, dry mouth spray which I’ve ordered, capsules… Maybe there are prescription strength ones that wouldn’t require me to keep putting eye drops in my eye and keep drinking every 5 minutes. I don’t know, guys! If this is Sjögren’s then the daily abdominal pain and bloating?? How do we sort that out? I struggle to drive for more than five minutes because my eyes dry out and I can’t see properly no matter how often I blink.

Then we go to our boy, seen below after I put eye drops in his eyes.

Yes, we have a theme.

I got his father to take him to the opthalmologist today. I cannot risk being in the same vehicle as he (as well as the other small children) he’s still got his very wet, chesty flu cough and bad rhinitis. Plus someone has to keep watch over the crazy calves (Surname means Cow for any new readers.)

The first step will be to use more drops for infection. Four times a day. And just in case the redness is caused by allergies, he also has two drops a day of allergy eye drops at different times to the other type. When I was giving his big brother instructions, he said, “So really, it’s six drops a day!?” And he refused anyway so I shouldn’t have bothered giving instructions. He said he is scared his hands won’t be steady.😅

The opthalmologist doubts it’s simple though, because we’ve already treated Micaiah with eye drops for infection and the symptoms aren’t going yet by now he should be fine. So… He will go back in two weeks’ time for testing if his eyes are still messed up.

As mentioned in the previous post, I’d asked the behavioural optometrist to take a look as the appointment with the ophthalmologist was too many days’ wait. She had indeed said it could show an autoimmune disease, or a disease of low immunity. We will see! Poor boy. I guess that’s what they would be testing for. I really pray it’s nothing. Oh, he also has an infection of his actual eyelid. So we must wash that carefully so it doesn’t enter his eye and make them itchy as the scratching makes his eye inflammation worse.

It’s not great. It is not good. I want to take care of my children more than I can. The stomach pain gets so that I have to come hide. I’m making natural medicine for the horrible flu. Those fevers have been awful. The one nights it was a Sid someone had poured a bucket of water on my poor Twin A’s bedding and pyjamas.

Wait, do you know that I’d never seen fresh turmeric till this week? 45 years old and never seen it. I’m deprived.

So I give them the turmeric, ginger, lemon, honey, sprinkle of cayenne pepper mix, herbal cough mix, homeopathic rhinitis syrup for their leaking thick but blocked noses, Vicks rubs, normal ADHD and ASD meds, normal supplements, echinacea, humidifier… It’s just ongoing. But I feel like I’m not doing enough because I’m doing it behind two masks – so uncomfortable- and I can’t just sit and massage them. I go do one child and then run back to ‘safety.’ Then another…No hugs. But the twins can’t stay away from me. And they’re both using their mouths to breathe on me. It’s scary.

If you’ve read the entire blog, you know that catching an upper respiratory virus is deadly for me. So balancing that fear with being the only caregiving parent is hard. Hoping my children get well soon especially as twins’ autism is not helping. They’re both extremely miserable. And as the days pass and the sickness continues, Talkative Twin is more tearful and sensitive while her twin wants to go drive way too often. I wish their noses would clear up! And no, nasal aspirators don’t work.

I had a light hearted post ready. I was going to post about how Amarissa was asking if you’re jealous of my homemade ice cream and frozen yoghurts. 😊But I’m doubled over in abdominal pain as I type, I’ve taken muscle and pain capsules for back pain, and sad for my miserable children and worried about my boy. The possibilities don’t sound curable. Surely my incurable diseases are enough for my family! Why more?

Hoping for the best. That’s all I can do!

Until next time,

Signing out

Grace by any other name…

Man, it’s been horrible for the past few days. Once again after a trip to the Aquarium, the children started dropping like flies. Do parents take their sick children there? How come shopping trips don’t do this??😭

They went on Sabbath morning at the request of Twin A. The first one to exhibit symptoms was Ms Ammy, above. After a long Sunday of us acting normally, she told us she’d had a sore throat the entire day. Ack! Why hadn’t she told us? I’d have tried to keep them apart from then on! When I told her I’d have to medicate her, give her lozenges for her throat, she said she actually felt fine “now.”

Alas, by the next morning, she was worse and her brother had joined in. Both were weak and miserable. So when T, their special needs aide and driver came for the morning shift, I asked him to rather do some school with Twin A and then watch over Twin B. See, I have a long story and maybe it’s time to tell it!

Segue into another topic…

Our first son was on a good path academically. I knew his strengths and I knew which subjects would work well for him to get his university exemption. But his father told him to choose a subject combination I knew was bad and I’d said should NOT be taken. Needless to say, I was right. And from now on, I will step up and protest like I did when I told the father that he had messed up. Of course there was no apology, he told me to ignore the past! So now, his options are limited because he only got a technical school/vocational school certification which only allows for higher certificates at private universities. He can’t even study a diploma.

Last year, he messed around. Wasted time. Played online games, was on Twitch, Reddit, many different personas for one website! It was creepy and a big waste of money. There are no bursaries for private universities so we have to pay for both children. But he did nothing except pass ONE subject. So he came home.

He’s been home since July. Our aide has been working half days Monday-Thursday and our son has been ‘working’ the afternoon shift. But now he’s chosen his own certificate and will be starting again on February 16th. Big sister is going back to university second year in February 1.

It’s time that our very busy Twin B, who walks around like every 4 seconds all day long, to get used to T being her aide as big brother won’t be around anymore. With her intellectual disability, she can’t tell what’s dangerous to do so she needs to be trailed around all day long! For someone with AS, it’s not something my doctor would ever approve of so we had to get T to stay longer and Mon-Fri now.

With the ones he does vision therapy and Maths with, sick, I asked him to teach Twin A and do the special needs aide thing with Twin B. Thankfully she was more rested so he was able to just watch her. Twin A wasn’t interested in that though. 😅So I did a bit of school while she then went to him.

See, legally, homeschooling is when the parent or grandparent educates the child like 97% of the time in their own home. No online school, no full time tutor. With our son being highly unlikely to have a job or finish anything academic, I decided T will be his full time tutor anyway. Special needs will be my go to should the government ever have an issue with that! And then I teach Amarissa everything else except Maths which she does with T. And I teach N everything. And she wanted the everything as that’s her routine! She is autistic you know!😉

Then we started worrying about her twin. We gave her meds on Monday and hoped her runny nose was her allergies talking but also gave her pain meds in case she too was in pain like her sick sister and brother.

Vi came in yesterday – I’d asked T not to come as I didn’t want him passing the virus on to his heavily pregnant wife- and man, she loves my children!

She checked on the sleeping two who were still miserable yesterday as they’d been on Monday when they slept all day. And it hit me that their father never does that. He just goes past their closed doors and leaves for work. When he comes home, he doesn’t ask how everyone is and if anyone else has caught the bug. She really loves them because she is their second mother. I say so because she said, “Let me go see my daughter” when she came to work yesterday and that really really touched me. And then, she made it even more emotional.

She commented that when your child is sick, you too are sick. You stress and feel horrible for them and helpless and anxious. Exactly! I even forget how sick I am because I’m worrying so much over them! I’m thankful too to their aunty who asks me how they are via WhatsApp. I can’t relax anyway because of the kind of challenges the children have, so to add sickness to children who become overwhelmed already by normal life is awful. I just want to take it away from them and I can’t think straight. I just want them better!

We also were lamenting how Twin B might be also dealing with the sore throat that began the descent into sickness, but can’t tell us. On Monday she was so angry so suddenly that Twin A came running huffing and puffing breathlessly to escape her as she again attacked her siblings and tried to smash the TV down onto the hard tiles. She told me she was running away to get safe. Man, I hate autism!

Later that afternoon, she asked me if we couldn’t swop her twin for a better one. 😭💔 She asked if we can’t give her to someone and then we get her a sister “who doesn’t scratch people.” If she had long hair she’d also know the pain of it being pulled out by the roots and your neck snapping backwards as she pulls on your ponytail.🥹

But by the evening, all was forgiven.

She thought it was sweet that her twin sat at her feet. Close. As close as her autism allows.

And yesterday morning, she followed her wondering twin to my bedroom. “Look! We are here together! I’m following her so she stays safe!” 🥹❤️

Is this what Karen my foreign also abused friend says she loves in me? Is this the strength she’s talking about? To not fall apart when life is so painful? I haven’t asked her. But she has said words to that effect. And it is a blessing. I have just felt so alone and unseen in this special needs life for so long!

And that is why having Vi also as miserable as I am has been great. Imagine all day knowing you left sick children with a wife who must not get sick but you never check on them all day! Then SA insists on visitation with such fathers after divorce when they couldn’t even truly father when they had your support! Very unfair to the neglected children. This is the stuff that makes women stay. At least if the children are always with you 24/7, you can be their safe space. The older one who can choose, said they’d only want one day a month visitation. And not 24 hours. Just a visit during the day and then come home to me.

When we divorce, will the court agree that I’m the only safe parent? They force shared visits here. As in, if this year they have a birthday with me, next year it must be with the father. A father who never celebrates them!? A father who has never bought a gift!? Not even a card? And is never interested enough to even ask what the card and gifts I bought his children, are!??

That is not love. Love is asking how they are. Love is T hoping they will get well soon when I tell him to not come yet. Love is the WhatsApp message asking how they are now and remembering the other issue…

Possible autoimmune disease for our 10 year old son due to an eye infection that also saw us notice nodules in his eyes. One nodule has grown so big we don’t even need the optometrist’s machines to see it. The combination is either due to a low immune system disease or autoimmune disease. Or just random. But my one friend knows I was concerned about his blood tests last year. Something was off with a lot of numbers that the paed ignored. Lots of “H” for high, and “L” for low, warnings in his full blood count. But he was only focusing on his low iron. Now I wish I had taken him to a haematologist to discuss the full results.

So yes, folk. Those of us who love the children are worried about their virus and about my boy’s eyes. Both red and worrying. I am grateful for the care the children have from those who have given them the attention they should be getting from their father. It means a lot. We can share the worry over the coughing that has disturbed my night which means Twin B is going to be even more miserable and dysregulated. We can be sad that Twin A is sick. She came to me multiple times last night late into the night, complaining of her blocked nose. At 3am today, she was up. And at 4am she came, couldn’t sleep again as her throat is too sore. Aashhh.

But after this closeness, would you be surprised? She kindly suddenly decided to play her sick twin’s favourite song on the Kahn Kids Academy app and her twin came very close to her after I’d managed to keep the others a bit far away.

During the holidays, they even wanted to phone T! They’ve never wanted to phone their father when he’s been away. They don’t hug him daily like they hug Vi twice a day especially when she’s leaving and they are sad. My Twin A even wanted me to get her to sleep over! But we don’t have beds! I would! It is so relaxing to know I can rest my sore body and she will watch them in the evenings. Alas, no space!

As for me… I’ll have to continue wearing my mask and hope the children get well soon and we get an answer to the eyes and their inflammation and nodules.

I’ve been up since 3am and it’s now 5:17am. Before that, my ooor girl’s coughing was disturbing me. I don’t have the mental ability to edit. I’m so sleepy and nauseous – medication side effect. Chat to you soon!

My boy’s dysgraphia has improved! You can read what he was trying to write! First time ever that anyone could make it out. I think the dysgraphia curriculum might be helping because just recently in October, even he didn’t know what he had written in the twins’ birthday cards! Obviously, there’s no cure, but they can improve! When she came down for holidays, Eliora spotted that Ammy’s writing has improved since she last saw anything she’d written! Ammy very proudly told me her big sister had told her her writing had improved very proudly.

Also, my boy has struggled with his ADHD and focusing. He hadn’t hit above 90% for any test or quiz, so he will be so chuffed to know what he got!

And it is confirmed. When I was NOT preparing Maths school for the two older kiddies, and not preparing or teaching any formal school for our boy, the pain was less. But now that it’s not only the girls who are doing school as had been the case for a few weeks, now that it’s the full complement of subjects, my body is screaming again much earlier, I am resting much later (alive just finished prepping for tomorrow now at 20:45 while their father is already nicely asleep..and the fatigue is back. Add IBS-C flare and you have a mother who just wants to lie down and rest! I see why the rheumatologist wanted me to stop working, folk! I feel so SAD! I was even able to exercise with the children and not feel it! Until this week.

I have learnt to never ever praise any man ever again. There was a time I thought this one man was such a good HUSBAND because he praised his wife for each baby born to them. Praised her strength even online, spoke of how emotional it was watching their son emerge… I used to wish my husband could be like him. Labour is taxing, and other men also spoke so admiringly of their wives. Never happened for me. But, that same man told me he had been beating his wife and also had been unfaithful for who knows how long, with multiple women including her own sister.😭😩😩I think he knew someone would have told me since when I told a young lady, she said she thought I’d known he was like that as “the whole church knew!” Oops, then I clearly had ever been excluded from being a true member! He had been saying that if we divorce our cheating spouses – she had turned the tables on him and wanted out the marriage and he’d found out about her infidelity the very same day in 2016 I found out about my husband’s- and married each other, he would write a book on how to turn your life around and stop beating your wife and live a pure life and I’d be his fresh start.

🫣

Needless to say, better the devil you know (very intimately!) if you can’t escape your marriage at all.

So, he actually was not worth admiring anyway.

So I’ll just say that I wish my husband would tell people how hard I work and how late into the night I go- for the sake of OUR children.

This is a worksheet for part of Amarissa’s Maths work tomorrow. It’s from the dyscalculia-friendly curriculum. I wish I had someone to boast about all the research I do and effort and time spent researching different curricula for our children’s learning disorders. My friend, and he himself, tell me about the praise they hey from their bosses. Where is my acknowledgment of how I’m killing myself to give my children every chance possible to reach their potential?

Or how about how the children are on different curricula completely, depending on who has which challenges? Surely it’s noteworthy that you have no clue what’s out there but here it is, in your home, prepared for your children? Planning taking place at night because during the day, motherhood and teaching were happening?

For this one in the photo above, the manual has many questions and he must choose the correct one from his flash cards. He can read these words perfectly. But I love the executive function aspect of the task so I included it for tomorrow but with only five clue sentences or hints. Where are the eyes to see that? Where are the hands to rub my extremely painful back?

I gave a lot. I would send loving texts, naughty texts, and prayerful texts. I even taught another church lady to be naughty and she embarrassed her husband once by sending one while their son was there and the dad turned red-if he could have, given he was black. 🙂The one I used to pray for once even told church that when met with a challenge and then suddenly able to figure a way out, he knew it was because I had just prayed for him.

But he has no clue what my difficulties are and there have been no accolades, rewards, versions of Boss’s Day gifts… No “I value you.” Just pain. And as I lay with my body wracked in agony, the emotional neglect hurts even more than when I’m not in as much pain. I am dying..and it’s not even appreciated. Yet it’s for OUR children, not mine.

The truth is ugly. The truth is painful. The truth will help people see how you can bow under continued strain, but don’t have to buckle under it and crawl on your belly like the one who treats you like you’re horse dung. Through Christ.

Yesterday was the first ever visit to the dentist for Twin A. The others have been, but I’ve always taken them one at a time and sat inside with them as has our helper once also gone in with Amarissa. There was a dentist who was recommended by Google as being great with autistic children but when I asked the children’s father to take Twin B, they didn’t even understand that she would need to sit on his lap as they were brand new to her and They didn’t expect her extreme anxiety and fear! Insisted she sit alone and even with us she barely opens her mouth! They also kept them waiting AGES which made our Twin B even MORE anxious and stressed.

So, scrap that for now. After all, I’d only sent her in because I wanted to be sure she wasn’t angry because of tooth pain. They allegedly did check and she had no cavities. Couldn’t even start cleanings And this now, is another reason why I had sent her with her father who is allowed to lift her while I’m not.

So, I decided to write in a community group, asking if anyone knew of dentists who really are neurodivergent-friendly. I got a few recommendations. One is a block away from us and I see his rooms often. I even recalled my husband had seen him. He didn’t remember. He said he didn’t ever see him. I told him I’m sure he’d been. And yep, he’d gone to him in 2010. One thing I know is my memory isn’t that bad after all! (Remember how I thought I was having the beginnings of dementia when the brain fog and menopause brain had kicked in? I am happy to report that the brain fog has reduced in intensity! It was scary! Not knowing where I’d placed something, never recalling what I’d wanted to say, putting things in the wrong place and only realising later when I or someone else finds it there…)

But, their father said he wants to go to the dentist we used before as he knows them. The one he saw when he purposely almost got me killed and bust up my tyre badly so it was undriveable . Remember that? When they told him to take the sedative for a procedure once he’s waiting in their waiting room but he thought he knows better than the experts? The time I got into my car with him as I’d need to drive him back sedated and I asked if he had remembered to bring the sedative along and he then told me as he drove, that he’d already taken it? When I then told him to stop driving and get out so I can drive but he refused?

I remember the fear as he laughed at me. “I’m not getting out! Are you scared?” and laughed. I panicked. There was no red traffic light. His whole demeanour changed and he became the person he truly is. His character appeared. And it was frightening. It was like I was being driven by the devil. I kept yelling at him to stop the car so I can at least get out! He refused and sped up instead, laughing at me . He started weaving in and out the lane, making me worry he’d smash into other motorists, going faster and faster. He ran a red light and I was so scared traffic that was allowed to come would smash into us but at the same time, it would have stopped him.

He then drove to the edge of the road over the yellow line where there’s a Vlei (body of water) and thankfully, eventually drove where there is a safety barrier. So he scraped my car on it as he drove in the edge of the road. I just heard scrape, scrape, scrape as he kept driving. I was so scared as we approached a curve where there’s no barrier to keep the car from rolling over but he kept going. No stopping. I phoned the police to try get them to form a blockade to force the car to stop by smashing into them but we were now close to the dentist anyway. He kept smashing the front tyre into the pavement, drove wide and across the lanes onto a centre MyCiti bus lane then back again over the bus lane kerb and went SMASH, HARD, into the pavement. Tyre burst funny and rim damaged. That small pause helped a I jumped out the moving car as he turned the steering wheel to go on to the dentist.

The pain in my legs from jumping out the moving car was horrible. A man could tell I was in distress but he kept walking after asking if I’m ok and I told him no. My car was damaged, my legs sore because of sheer arrogance! He did go into the complex and parked wrong. He opened the door and like an extremely drunk man, sat but couldn’t sit so he was bent over at the waist then swaying backwards like he was going to fall as I limped to the parking lot and watched through the see through fence.

I couldn’t lift him. He couldn’t walk without support. So I had to go in to the dentist and ask the ladies to help me get him in. Given his flirtatious nature, I was terrified he’d say something inappropriate to the ladies as we supported his heavy weight in the elevator up to the floor their rooms were on.

I went back down but I had no tool to remove the lug nuts. The sellers had not left it with the wheel jack etc. I had to call my insurance emergency line, they said their lug nut guy wasn’t working as it was a weekend so would search around for someone and gave me numbers for a place nearby but it was closed. I had to ask church friends and hope they’d not gone to church, (They had not.) if perhaps their Audi had the same ‘key’ but when they came, it was not a match. Finally, Audi found a guy who had master keys for all types of nuts and he came.

I had even asked my oldest brother who owns an Audi. Plus I just needed someone. I was now traumatized guys. I’ve never had someone just ramming me into barriers and laughing as I pleaded to be let out. It was terrifying and the damage was so bad and deep into the side of my car that my brother was angry.

Later, the dentist said they’d not even imagined how senseless he’d be because I had looked so calm. But I did not feel it at all. My husband could have killed me. All because of narcissism that tells them they know better. I wonder if he ever told his floozy about THAT.

So..those dentists are the ones he wanted to take the children to. Despite my saying the one a block away knew neurodivergence so he’d be better. I couldn’t get hold of his choice on Dec 7. Their WhatsApp line didn’t work. I phoned, no answer. Eventually last week the children’s father phoned them while he was in Johannesburg and no, he didn’t make an appointment like he’d wanted -having all three talking children going on the same day- he told them to phone me to make an appointment for him to take the children and have his teeth cleaned. What??? Am I an unpaid PA? It was his choice dentist, his choice to take the three all at once and he is ordering people to phone me!??

(I’m sharing this because the elders at my church have known for years about the emotional and financial abuse but did nothing except encourage him by asking him to preach and teach. And they have known since October 16 about the extramarital relationship and have done jack all. Literally. They haven’t asked how I am, how he’s treating me after I exposed him to them, nothing. Not a single church leader has cared. So I now will speak the truth for myself on my own. Nobody standing up for me against his abuse and infidelity nor against the elders’ allowing it and encouraging it and the arrogant ego that almost got me killed.)

So those poor people phoned me and I set up an appointment for yesterday. And guess what. For all his insistence that he’d rather go further away because he knew them, turns out the old dentists he knew are gone anyway. It’s some new guy.

My children came back after their appointment yesterday. It was Twin A’s first ever dentist visit, remember. They all have ADHD and autism and our girl who isn’t diagnosed yet seriously does show autism and PDA like the neuro paed suspects. But it could be mood disorder etc etc! But readers, he left all three children alone with the dentist and went out to do who knows what. Or talk to who knows who.

Never would I ever do that. I don’t think any true parent would! Micaiah sat the wrong way round on a chair and spun around and around while the dentist worked on one child. Twin A was, in her 11 year old sister’s words, “So nervoused!” I felt so bad that my poor child was scared and had no parent with her. But, she also was dancing around and purposefully making Ammy laugh while the dentist cleaned her teeth! It was ADHD central. Anxiety and fear made them even worse! I feel sorry for the poor dentist!

And why was our girl nervous? She thought the dentist would say she needs braces and that she’d get them. She had not expressed the fear and if she had, I’d have told her it’s not the dentist who does braces! 🥹During the weekend, we’d mentioned how one dentist I had taken Ammy to had said she will need braces, we had spoken of their big sister’s horrible brace experience, and somehow she took that to mean all dentists say you need braces..and then somehow believed she would get a set. Poor baby!

The first thing she yelled when she came in was, “I didn’t get braces!!”

I will warn every one I can. Run away from narcissistic men. They want children to give the illusion of being great fathers, but they don’t want to parent them.

Twin A asked if she could read a book about sloths on Sabbath afternoon. I said yes, it’s Creation, so she could learn. She took her tablet down to where her pool floatie was so she and the floatie could read together.

“Look at its claws, Mommy!”

So I told her to look at then the claws.

Reminds me of the damage Twin B inflicts on us in her anger.

My contact lens in my eye is sitting funny! My poor girl, Ammy, has a welt like this on her hand. The sting takes ages to go away.

I love my children. I will be even more of a single mom to them than I already am. Never again will I allow them to be with a strange, new, dentist alone. I’ll ask Big Bro to take one at a time for me or if our helper is around, her. (Seeing as driving and sitting are not good for me.) And somehow I need to stop Twin B from growing so she doesn’t become even stronger. Only one of these is possible.

In the meantime, I’ll enjoy how their brains work. Like when Twin B got out the water to go to the kitchen to get a wooden spoon to pretend she was rowing a boat. For a few seconds.