Author: 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.

I lived my life as a girlfriend, THANKFUL for the narcissistic love bombing. It felt like true love, not an attempt to trap me. I didn’t even know love bombing existed when I was 18! I even mentioned it in my vows. “Why do I love you? It must be because of the ways you show me that I matter so much that you put my needs above yours. It must be the way you move so that you sit next to an open window in the cold wind, so that I am shielded from it… It must be because you care about my wants as if they are your very own.”

Little did I know that as soon as the wedding was done, that would end. By the time we got back to the UK less than a month after those vows, back to the UK where we’d BOTH worked hard and saved rent and flat deposit, the real woman he was married to made her mark. She’d stolen our money.

And he did nothing.

Suddenly, I wasn’t even a factor in his life. His mommy, living with her married lover, was the real wife. (See my channel on maternal son enmeshment.)

And I kept quiet. I had nobody to tell. My high school friends said I was too religious. My church friends weren’t close to me. I had no loving family to talk to. And I had not yet met the other sister in law again after the wedding (that actually never happened. If you watch my videos I mention how I was told I’d be a bridesmaid, had my hair undone by the mommy even though the bride -and the other bridesmaids-said my style was perfect for the wedding and I had said to leave my hair alone. The wedding didn’t happen because the families had done everything as it should be done but then last minute, bride’s family said she’s not allowed to marry so she ran away to go to the country the mommy and son lives in. But then her family arrived on the day of the wedding and because she wasn’t yet 21 which was the legal marrying age in her country, it was a fake wedding and even before the reception, her family put her in the car and took her back to her country.)

Trapped by a Christian marriage that only allows adultery as a reason for divorce, to a non Christlike husband.

I kept quiet over the years for a very long time. Not because I accepted being treated like I’m nothing, but because I was praying and hoping. After all, if you TEACH the truth surely you want to live it? He would tell men at family camps to say something complimentary to their wives every day while never doing it even weekly for me. Surely we just needed time to grow.

Instead, I finally got a reason but no way out. Infidelity. Still I kept quiet.

Until probably two years ago. All these years since 1999, I’d kept quiet when I was spoken to like I am an idiot. I never said, “Do you see you were wrong?” But that silence didn’t lead to anything but my erasure in the family as a mother and intelligent human. So I spoke.

Note in the call above in the photo for help they mention Shoprite and Checkers? These are two well known supermarkets. The company brand Shoprite owns both supermarkets. One day, as we drove past Bayside Mall during renovations, there was a sign on the outside of the building. Besides the usual shop names – Checkers, Markham etc, they had also put up a Shoprite board. I commented, “Oh! There’s going to be a Shoprite and Checkers here now!” He replied, “You do know that Shoprite owns Checkers and Shoprite!?”

I replied, “Yea. I know that. But they aren’t going to advertise the parent company on the mall! They are going to add the shop!”

Him, “I work in retail. I know what I’m talking about.”

And that day, I decided I was done being quiet. My quiet never led to humility and asking for forgiveness. It never led to confession for being wrong. So why!? Why demean myself, dim my intelligence, make myself seem stupid or accepting of the psychological abuse? No reason!

I waited. I bided my time. I knew I’d eventually get the proof, seeing as, as ever, my word was meaningless to him. Finally, the renovation of the Mall was complete. I went to Markham to collect a parcel and went down one corner then to another part of the mall. I took photos. Shoprite supermarket and Checkers supermarket.

I sent the photos together with the words, “I may not work in retail, but we laypeople have sense too. Please don’t treat me like I’m stupid ever again.”

The underwhelming reply

“Ok”

No matter how conciliatory you are, as soon as you stand up for yourself, narcissistic men lose their minds. You’re just a trophy. You’re not meant to think independently! You’re not ever meant to make them realise they are not perfect! In their minds, they are always right and your job is to keep showing them they are always right.

And so, he was right in being unfaithful over two periods in 2016 and is right to still be in a relationship with the same woman since 2022. Perfect. Even in sin. Perfect even when God frowns. And his fellow misogynistic church leaders think exactly the same way. Women are not allowed to think for themselves and be independent minded. All men are perfect. Only women do wrong.

The first time I spoke up, showed me the lack of character. No apology. No humility. No recognition of innate intellect and common sense. And I’m tired of playing the part of a silent cipher. But I’m trapped. You can’t don’t a single income up when you have university fees. One is R78 200 and the other is close to that.😩 Not sure if that means I will have to live with the worst IBS-C flare of my life until I am free. It’s bad. Really bad and as I said in another post, not going away! And what triggers flares? Stress.

Now to figure out what we can give to the victims of the fire. My children were shocked by its spread. It was small when they passed it in one direction. When they were returning home, it had spread dramatically, even jumping over the road to homes on the other side. Dunoon is a very low income township- many shacks were burning badly. Helicopters had to be called in. So to hear that they saw a weeping woman, crossing the street with her only salvageable possessions in a tiny pink suitcase broke my heart just like it broke Amarissa’s. Does she even have a job? Was she still job hunting like many are?? Did she get her documents? How will they rebuild?

May none of my pain ever make me blind to the plight of others. May my children see action where possible so they never lose the ability to empathise with those who are weeping. May they have characters from Christ.

Reader, my rheumatologist never discusses side effects of the medications she gives me. None at all. Not of the pain meds, muscle relaxants, antidepressant for nerve pain, anti inflammatory, nor the big guns we use to try slow the disease down and reduce the disease burden. Never. Except for protecting my stomach with an extra medication as I have chronic gastritis so my anti inflammatory is a problem even more for my already ravaged stomach lining. I understand why, because not taking the medication and the biologics or as in my case now, JAK inhibitors means faster death and before that, disability. So it’s a no brainer. But still…

I knew Sulphasalazine was bad for you and to avoid the sun, but in April it will be a year on Rinvoq. It could have been a year of not knowing that you are meant to avoid the sun! Why? Rinvoq raises the risk of skin cancer and lymphoma. Do you know how scary lymphoma is to me? And it’s so difficult to detect early. It’s bad enough AS itself raises cancer risk anyway and like in my case, has attacked my lungs and kidneys. But now the meds increase other different cancer risks.

Skin cancer. I was checking out my Facebook feed – if I removed you it’s because you’re not acting like a friend and what I’m currently sharing on there is only for friends -and I came down to a post in my Rinvoq support group. And that’s when I found out about the skin cancer. I already have a mole I always knew I should keep an eye on. But though I’ve known to check it since I was a teenager, I haven’t been diligent. I did once take a photo of it -it’s right by my ear so I don’t see it daily, I remember it when it’s itchy which is rarely-but I don’t know where that photo is! And right now it’s dark so any photo I take now while I remember to is going to be unclear.

The woman in the group was asking if it’s ok to use a tanning bed before she travels to a very hot island so she can darken nicely in the sun even though she knows to not be in the sun. Now that, to me as an African who uses nothing to change her appearance, was already a bad idea anyway. Tanning beds are a no no for anyone! And to darken nicely in the sun you should first darken yourself unnaturally? I had no idea that was even a thing white people do. I got plenty dark when we visited my grandparents in their mountainous village without any tanning in a bed first! (And my mother made sure I knew it, making me put milk of magnesium on my face and wear hats so I don’t turn even uglier darker than I already was.)

But I also didn’t know the skin cancer risk! I checked and yep, you are told to avoid sunlight, and if you do have to be in the sun, to use sunscreen with a high SPF. And the one I do already do, to wear protective clothing – long sleeves and bottoms to cover your skin from the sun’s rays and of course, to wear a large wide brimmed hat or peaked cap. I didn’t know.

I had been feeling guilty that I was too busy to be out in the sun for longer than it takes to hang and bring down, hang and bring down two loads of laundry. But it’s actually GOOD! I did buy sunscreen when I first heard of skin cancer decades ago when it came out that Bob Marley had it under his toenail despite being Black. Popular wisdom had said Black people don’t need sunscreen. I also knew that though our risk is lower than that of white people, we have worse outcomes because our skin tone itself stops us catching the signs fast enough and so when Black people realise they have skin cancer, it’s more advanced and the prognosis very poor. For white folk, the 5 year survival rate is 94% vs 70% for Black.

How did I not know the skin cancer thing? I can actively try avoid the sun like I actively (with my N95 mask) avoid catching viral respiratory infections! I believe it’s better to tell us of the diseases we can try reduce the risks of. I can also check my skin more often. Our skin cancer often presents differently to that of pale folk. I’ll be more diligent from today!

Here’s a random photo of me.😅

I turn 46 this year folk! I have survived. I went from praying to die due to extreme AS pain to being grateful I am alive each new day. My children need me. And though it’s hard to force a smile on my face, this mother has no choice. Not only because it’s a principle I glean spiritually, but also I have seen the damage of an emotionally absent mother in my diaghetr’s birth sister. So even when the AS fatigue hits hard and the pain has built from a busy day, the smile comes on even when the tears want to spring out instead when especially my talkative six year old comes often wanting me to download some random wild animal video “NOW!” (Pathological demand avoidance is stressful even for us who support the ones who have it!)

I have hurt my shoulder badly. Today, I can vividly picture the bone scan with the arthritis in my neck and going down. I did a bit of ironing Tuesday to Thursday and I paid bitterly for my choices. Shoulder still sore. I will go buy Transact patches and go back to those days when the nurse giving me the anti inflammatory injection told me she fully understands why I have pain patches all over my body. 🙂

BUT on the other hand! Rinvoq is DEFINITELY the best treatment we’ve tried. Finally after eight long months of testing it, it is finally providing relief. I still stumble because my foot drops as I walk, so something is still fusing BUT the pain!! For three days now, I haven’t gotten up and raced to the pill box to get my pain meds! Usually, I lie awake waiting for a suitable hour to take the first pain pill of the day, knowing that if I take it too early at 4am, the effect will then go away too soon and you can’t be on excruciating pain while parenting. So you’ll lie in excruciating pain when everyone except their running father, is asleep.

I haven’t done that. I haven’t even taken my tablets until later to stop the pain from STARTING. Like today, I was up at 4:20am because that’s when the children’s father makes noise getting ready to go run for three hours or more, but I wasn’t in pain. I could study my Bible and pray. No pain!! No pain!! Can you believe I had no pain at all except for my shoulder and the ruined right leg where my bone meets the pelvis at the back??

I’ve walked around and done laundry and all and only at 7:40am did I take a tablet when the pain started whispering. I haven’t used all my daily muscle relaxant (and painkiller) tablets in a week! I have more energy.

I have more energy.

I cannot believe how I feel waking up not feeling like I’m dragging cement stuck to my bones. I am not stiff either. I can walk without feeling like a tin man! I can’t believe how much better I feel. The pain is still there. But it’s bearable!

“And in the afternoon? What about the 4pm wall you hit where you just want to cry from how the pain has been building and you need to lie down for the rest of the day?” you ask.😜My answer is, ‘that end of the day, I’ve been enduring and trying to live with the pain but now I can’t anymore’ level of pain and built up exhaustion is not coming at 4pm anymore. It’s at 6pm that my body gives up.

It could be Rinvoq. But as I type listening to the children screaming at each other and fighting outside, what if it’s because I haven’t taught formal school for two weeks? What if THIS is what my rheumatologist knew I’d feel when she told me last year to stop teaching?

If this is because of not teaching, and not because of the Rinvoq, then even more am I saddened at the response I got when I told the children’s father that I need to “go on disability leave.” The “Is she crazy?” hurt back then. It would hurt even more if my extreme suffering is caused by something doctor and I both begged for and were stopped from doing.

Let’s see what happens when I resume teaching. For now, I’ve only been teaching Bible.

I promise not to kill myself ironing ever again.😅

You have no idea how bad I felt. I was standing outside with our little non speaker and I pointed out a flying butterfly to her. Wrong move. She ran into my body, put her arms around me in abject fear and hid her face in my side. That was a very strong, “I am TERRIFIED!” And so, as spring sprang up, we all realised she’s afraid of butterflies and dragonflies. Both of which we don’t have a lack of.

She’s scared of them unless her twin is with her! How crazy is THAT??

First of all, it was already so cute that her twin was blowing bubbles to entertain her. This girl loves her two minute younger sister. She told me we needs the Baby fabric softener I use for her eczema because she is a baby, “She can’t talk and she’s so cute!” And she is so adorable about her bigger twin sister. “Mommy, you know what? I was playing with R, I sang to her, I kissed her, I blowed bubbles and she didn’t scratch me!” Poor lovey.

So there they were outside where the insects are and enjoying each other’s company. My first daughter is the one who took the photos.

Then later on as they went round the house, my talkative twin caught a butterfly.

Look at THIS! She’s standing right next to her and she is looking at the butterfly! Unbelievable to all of us! Sometimes she even quakes in fear but this time, she not only didn’t even flinch, she pulled her twin who was still holding the butterfly!

And when it flew away, she still didn’t run! Wow! It’s got to be twin ‘magic.’

And there’s been a lot of ‘magic’ happening around here.

Humility. I will keep banging on about this because it’s something I love and she keeps showing it! Ammy is such a humble girl. Yesterday, she was asking me what the folded napkins were that had come with disposable cups and plates. I told her they were serviettes. Note, she turns 11 tomorrow. She asked what aserviette is. Her six year old sister told her, “A serviette is something that you use to wipe your hands and mouth when you are eating.”

I still can’t get used to her way of speaking. Our little autistic dictionary. But also, how did she know? Which video did I download that taught them that? And how wonderful it was that Ammy asked me I would post that her little sister knows what a serviette is!🥹❤️❤️❤️She loves praising her little sister and making her very aware of her strengths.

Our little girl is into wild animals now. No more Pharaoh, it’s animals! Ammy told me she liked a black dress I was wearing and ywim a concurred. “I like it too Mommy! You’re like a black jaguar!”

Ok then!

I can see the resemblance… 😅

It’s been a week. Full of blessing and the norm. We have lovely guests from Nairobi, Kenya who gave me flowers. It is so special having something handed to you. I can count on one hand the friends who have given me gifts. Ok I can also count on one hand the friends I can count on. Old friends I no longer have communication with who tried to raise money for surgery, friends who sent money for medication, friend who bought me a denim skirt after I had looked fruitlessly for one for YEARS… I am thankful for the beauty- filled moments of the week.

Yes we ‘did’ Christmas yesterday. My children who attend OT have the bug now so I am stuck with it for the foreseeable future. For me growing up, we knew Christ wasn’t born on this day, and we were poor. So the day meant meat with our food after slaughtering a sheep and sometimes a cow in my grandparents’ rural homestead, it means jelly and custard, it meant that little children wore brand new fancy clothes that you’d use for church thereafter and that was it. If we couldn’t travel that year, it wasn’t special at all.

But it is special for all my children including my daughter’s biological sister. Let’s start with her! We (daughter with my full support) finally got her mother admitted in a softy hospital for assessment and help. She will be there for two more weeks. And the girl is thankful. I am thankful. If I can’t adopt anymore, then let me love from afar. She hasn’t even told her mother that she wasn’t accepted by a university she’d applied at for next year.💔Only I know. That is what I am here for- to make people feel less alone. So you can guess how happy I was when I asked if her cousins were with her yesterday and she said yes, the cousins had actually gone to the home the previous day, and taken her and the babies to their home.❤️❤️❤️Oh my heart was so happy. They were not able to travel as they do not have the money to do so. And when I say “travel,” I mean ‘travel to the area the apartheid government had designated as belonging to Xhosa people with some Sotho intermingled.’

I spent the year buying things here and there to give the children their Christmas. Earlier in the year when we had a lunar eclipse, my bigger girl was as enthralled as I was, sending me multiple photos of the progress. She mentioned how she wished she had a pair of binoculars. So… Binoculars were on the list. I always ask them what they want. One girl wanted a camera, one girl wanted a purple skirt, Micaiah wanted a monster truck, and my biggest boy wanted a small backpack he can put wallet and driver’s license in, and our eclipse girl wanted a journal.

You should see how much paper is lying around! It’s a case of buyer’s remorse! But they enjoy it so much that I can’t hate. My talkative girl took a photo of me and said she would look at it when I’m not there. Made me a bit emotional imagining a day when I’d not be there forever because I’m dead. She took a photo of the lovely “bowl of cereal that Reo was eating. See, it’s not the packet, it’s a bowl!”

I got each of them what they wanted and an extra. Big son was happy with the pleather personalised notebook and pen. He said it looked very sophisticated. Biggest girl was happy with the unexpected and very high powered binoculars she got. The girls were happy with their purple tops and pink bunnies that they got besides the little black and white printing cameras and purple skirts they wanted. Micaiah got his monster truck and a pair of jeans and a top and a camera. Ahh the joys of multiple children! Now you see why it took me a year to buy all this. Our non speaker got a pink bunny and a train set.

And though it means nothing to me, it meant the world that they decided I also need a gift! I got a lovely mug and hot chocolate. In the heat of summer. So it will wait for when I’m feeling like I need it and somehow they got one without gluten. Did you realise how many cans have gluten? I never expected hot chocolate to contain gluten.

And then today I realized my gift to myself is a very strained and painful shoulder from too much ironing yesterday. I could only manage to iron a child’s comforter today before giving up. AS is the gift that keeps on giving. I am not my body. Or rather, I am more than what my body allows me to be. And that makes me sad and mad.

Nevertheless! I shall be thankful that with the highs and lows of special needs parenting, I have some highs. Our girl is saying more words. She sadly still wants certain things so I get dragged around when I’m ironing, preparing to medicate a child, trying to rest… There’s no holiday. But there’s peace in my soul and heart.

We will be fine. I know it because with the flowers, came prayer. When our guests came, the wife pulled me aside immediately and wanted to know how I am. Readers, you won’t believe how moved I was. The last time her husband came alone was right after I had discovered my husband’s first known affair. I could not pretend to be happy when he’d just broken my heart. And because everyone was acting like if I told anyone I would be the betrayer, I told myself I would have to pretend we are a married couple when really, I was the married one, he was a hunting bachelor.

The wife told me how disappointed her husband was. How he phoned her and told her I hadn’t met up with him when Mr went to the hotel he was staying in. It bothered both of them a lot and they wondered if I was ok. I had no idea my not going had had an impact. I truly had thought I was an extra and that the husband had really wanted to see Mr but because we’d sing together in a trio then quartet, I was a welcome addition.

I told her everything that I could think of between children interrupting us and wanting attention and her giving it fully and lovingly to them. And I will end with how as she heard a mix of a bit of everything including AS, she was compelled to pray for me right there and then. And my children saw it. Amarissa said she was such a caring aunty to pray for me, it was very special for her to see that.

I don’t know what the future holds for my breaking down body and somehow caring for my ‘getting bigger, stronger and drawing blood when attacking us ‘ daughter as I look to the day I am alone and not tied to someone who doesn’t know how to be a for better or worse, in sickness and health, forsaking all others type of person. But somehow, in the same way those who understand this life tell me they don’t know how I’m not wallowing in despair, we will manage through it. It won’t be easy. It won’t be fair.

But none of this current life is fair either.

It will be made right.

Have a blessed Sabbath and peaceful and healthy weekend!