We Did It!

Grace by any other name1 Comment

All of us did it! Every sister who asked almost every single day how the day went, if there was any improvement in the children’s challenging behaviour, if I was able to sleep (No), if the twins slept (We’ve double diapered Reo and she’s been quiet. And so, her sister has also stayed asleep.) Plus she’s on meds that help with sleep. Oh yes, that.

Let’s get to that first. Last Monday, I took Twin A, Naynay aka Neilo aka Oreneile for an assessment. I’d filled in the Connor’s questionnaire as her teacher and my husband did the “parent” one. I also did the M-Chat assessment. I added all the observations of autistic behaviour I’ve made over the years, and emphasised the current challenges- I can’t teach because she interrupts me, she thinks she’s also the teacher and takes over, her violence that comes extremely unexpectedly when nobody is even doing anything that should cause harm or she has not asked for anything we have denied… Her irregular speech errors, “What are you going?” instead of, “ Where are you going?” And, “Where you went?” And, “What are you doing a?” Or, “What are you doing the?”

The extreme hyperactivity and inability to focus. Insisting on doing formal school work (We believe in delayed academics), but saying the work is boring and moving pages ahead, or doing her own thing like writing letters on a page teaching her letter recognition when nobody told her to. Her taking over and teaching ME… And her interrupting her siblings as they learn.

I mentioned the excessive role playing. She don’t play pretend, she becomes a character she has learnt about and is that person in her head. “I don’t want to wear a top. Pharaoh doesn’t wear one!”

That day, she decided she was an elephant. I didn’t even try talk her out of it. It was (is) part of her constellation of symptoms, after all! And after her head was messed, weight taken (She hasn’t ever seen him. She doesn’t get doctor sick, she goes big/breaking her elbow jumping on her bed and then her arm the following test jumping on a trampoline and falling off both times.) She has horribly changing moods-laying out and hurting others for no discernible reason after having just laughed with them. Very sudden and distressing.

I also mentioned her prodigious memory. She had the memory of an elephant!! Can be so caring. She kisses my back and prays for me. She tells me to rest. She tells me to lock my bedroom door so her more violent sister doesn’t come pull me everywhere and anywhere, stacking me when I can’t give her what she wants.

After an hour observation, talking to her, talking to me, witnessing her busy-ness and sudden requests to wash her very clean hands, everything showed that she indeed she has autism, ADHD, extreme pathological avoidance. I was shaken by the word ‘extreme.’ I guess in so used to everything being too much that I didn’t realise it really was too much! Every single child is on the extreme when it comes to behavioral challenges that leave me so tired and alone that I b never paused to think, “Why is out PDA so much worse than it could be?” It’s more the older two who exasperate me because I know things could be better, they would be helpful if they were neurotypical and their actual age developmentally. Why suck ink and spread it everywhere on the floor, on your vest… Why throw clothes out the window and make awful messes every single hour?? Why resist so much? Why the screaming? Why does their sister pull only me so much and.. and why can’t I ever REST???”

We’ve begun on a very small dose of ADHD meds and mood stabilizer which also happens to boost sleep. Both girls are on melatonin, SleepVance but we were still struggling. Waking up for HOURS and being loud about it.😆 She’s also on allergy meds as us her minimal talking twin and minimal talker is on another med that send to help with sleep as well. We shall see how to shift things around. So far, no positive change in her behavior.

Back to us! We did it! Yesterday was injection day again. My regular commenter who once sent money even keeps track of the days as the injection day draws in. I’m the one sticking the needle in, but they are the ones who show care and concern every single day. The one who listens to my cries when in do open up. We did it! Four straight months-NO STOPPING!!! )With Enbrel I never even reached two months!

I don’t know yet if it’s starting to work. This just could be the end of a flare and it will become extremely bad again. The fatigue (extreme exhaustion and wanting to lie down began again yesterday after a few days of my having to remind myself to calm down because doing too much would trigger n more pain the next day.) But.. I had a better week where I didn’t beg to die and pain meds actually did reduce the pain a bit. But since yesterday morning, that has changed. Still not bad enough to wish to die though, so I’m pretty chuffed for now. Praying I get better. We got to a whole four months! Thank God for that privilege! I hope this is the treatment that shows this all down and helps my lungs and kidneys too.🙏🏾❤️

Heritage Day Yesterday

Grace by any other name2 Comments

And it coincided with my son’s birthday, the one whose heritage we don’t know.

My daughter’s birth mother has no idea how blessed I am to have her. To answer any questions, to explain something and to just be a big sister to her. I like to act, give, care and better yet, I have another young lady who is extremely invested in birth mom’s future and that of her children and grandson. Seeking bursaries for her teen daughter’s education next year, looking for anything that can help earn money, like learnerships..though time is now too short so daughter is now aiming to go to university next year.

But what about Micaiah? Where is the woman who gave birth to him on September 24? Is she ok? Did she have more children after him? How many did she REALLY have before him?? Do I pass her in the mall? Is she one of those who goes hunting for expired food? (Three people were shot dead and fed to pigs recently. A company dumps its expired food near a farm and a mother and a married couple went to pick what they could find in the farm boundaries. The owner shot them (allegedly) and told his workers to feed them to pigs. There is terrible suffering in our country. I know some who are that close to starvation that they’d give their lives for expired food. Is his birth mom still on the brink as the social workers claimed she was? I wish I knew.

For now, I’ll celebrate the boy I have, who I have raised since he was four and a half months old. A boy who has brought me to tears because of the horrible challenges he has faced. And who has made me laugh at the weirdest of misunderstandings and random use of highfalutin language when he clearly doesn’t know the meaning of the word he’s just used. I am so thankful for his presence and his life. We have more difficult years ahead of us, but what I love for him, is that he doesn’t know it. He is happy.

His little sister- age four- was trying to write number ‘eight.’ She failed once, I held her hand for three more and then she did her own two that were clearly recognisable as eights. My son noted later on, “Hmm, and I still can’t write an eight!”

No self pity. Just a fact. As if he’s proud that she can do what he cannot. I hope that that lack of concern lasts his entire life. He deserves as much of a happy go lucky life as he can find.

Happy birthday my boy. We are blessed to have you in our family.

AS

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I’ll begin with the ugly. I am coming to the realization and understanding that AS is progressive not merely in terms of losing mobility, but in increasing pain! I wrote when I was diagnosed, “It hurts knowing that today” which was bad “is better than I’ll be tomorrow.” But we had hope. Biologics were meant to save the day! They were meant to slow it all down and reduce pain tremendously and you’d regain your life.

Here we are a year later and none of that has happened. I’m now on my second biologic and even with spring coming in, no reduction in anything. My husband was worried recently that at the trajectory I’m going at, I’ll not be in a wheelchair in ten years as he originally feared when I told him the diagnosis, but next year. I told him that my secret hope was that it was because it has been winter and I always had awful winter flare ups when I was a teen and adult and perhaps things would improve in spring and summer.

So far, that has not happened and that is on double strength pain meds. I feel stuck and extremely but internally distraught. I don’t start limping after a few minutes of taking a walk anymore. I go walk even though I’m limping. And stiff. The stiffness is new. It’s as if my right leg is being held together at the pelvis not by a joint, but by concrete and I have to force my leg to swing forward. When people stared at me when I could tell they are being like ‘the Karen’ and thinking I shouldn’t be parking in the disabled bay, I exaggerated my limp but I don’t need to. It’s there and it’s real and anyway, I needed to be closer to reduce how far I travel, not because I’m broken.

I’ve realized that whether I’m lying down, seated or walking, no position reduces the pain anymore. Lying down used to reduced the pressure on my SI joints. Now, there are so many painful bones that lying down makes no difference. Though it might help with the persistent fatigue.

Basically, my new normal is ever present pain. Everything is done despite the pain. Everything is done while in pain. And nobody knows.

I’ll continue this another time. I stated that I’d “begin with the ugly” because I had wanted to mention something neutral about people’s perceptions of autism. I had much to type but my elbows and shoulder and fingers ache too much. I often think of retiring the blog. It hurts too much to type now.

A life devoid of real happiness because it’s clouded by constant pain, bad pain. That is me- now.

The White Guy

Grace by any other name2 Comments

So, we’ve had some work going on in our yard prompted by a variety of reasons. Firstly, I have ALWAYS wanted a swing in my garden for my children. I wanted one when I myself was still a child. My parents bought my sister and I one to swing on together where there’s push pull and the township children enjoyed coming to use it. I wanted that for my future children.

Secondly, our screamer screams when it’s time to leave the public park. Not nice when members of the public are around. She also is hard to handle, goes after other’ balls they are playing with, touches people’s bicycles…Our talkative twin also adds to the chaos when she argues that she needs “just five more minutes” after multiple warnings.

Thirdly and sadly, there are weird people hanging around. About a month ago, as the teen daughter and her three younger siblings walked, a man in a B class Mercedes Benz asked them if they wanted a ride. They said no. Then he asked if they wanted to go to the arcade at Century City to play. They kept walking and saying no. He asked if they were sure they didn’t “want to go have fun.” *shudder* At that point, I not knowing what was happening but knowing it was starting to rain, told my son -who had stayed behind with our refusing to walk twin child – to take her into the car (That she always loves) and go fetch the others before they got rained on.

As he drove up behind them, seeing talking to the man, the man put his hand out the window to wave him around his car. When he realised that the children knew the driver and were going to the car, he zoomed off. As my teen told her brother what had happened, he then tried to chase the car. (Don’t ask me what he’d have done.) They lost him at an intersection.

Very disturbing.

Two Fridays ago as the same children were walking, the man slowly drove up behind them. Our teen noticed but pretended not to but then the two middle children saw the car and pointed at the man, who then sped up. Now, they were scared so our girl told them to run to a corner where they would go in any direction and the man wouldn’t know. So my poor, terrified children – age 28, 9, 8 and 4, ran.

That image is haunting. And so sad. Makes me tear up even typing it! I hate criminals!

I bought her CS-gas (tear gas) to spray at him if he ever follows them and tries to lure them into the car. And booked people to come build a jungle gym in the yard so there’s less walking outside.

Snippets of the building time.

The Pharaoh hat has a strange rubber thing that has been eating at our girl’s hair, so I coaxed her into only wearing it on Wednesdays and when they go out in public. They won’t understand why she has a pillow case or skirt on her head, but they’ll understand THAT!

One man asked if she’s Cleopatra. She has no clue who that is but answered indignantly, “I’m Pharaoh!”😅

One wanted to use the loo but waited for me to finish explaining some school work to my son, then asked if I run a daycare centre. Haha. Never thought that that is what it would look like. Told him nope, these are all my children.😊

Yesterday they came to fix a few issues and he (White supervisor, Black workers as is the norm in our country) started talking about how the poor are getting poorer and how distressing it is. I thought not of ourselves or my employed friends whose salaries are affording less and less, but of those who have no job at all and agreed with him.

Then he says, “In the 80’s it was better. I mean, yes, I was a child, but there was less of this then. Poverty wasn’t bad back then but now, the world over, everyone is struggling more and more.”

I thought to myself, “Man, do you know who you’re talking to? I was also a child in the 80’s and it was AWFUL for US! Tear gassed in the ghettoes your people forced us into. Police coming in to find and kill!?? Police causing rioting and fear!? Me seeing stabbings and people being burnt to death. And our people were dirt poor. Starving poor because we didn’t ‘deserve’ much pay for the few jobs we were ‘allowed’ and legally trained to do- menial, cheap labour. Oh my! It was worse back then!”

It’s scary how White people either don’t know what life was like for Black people during Apartheid, or they forget that Apartheid was recent! They had fun in their safe suburbs. We lived with guns, fear and flames! Add the grinding poverty where we were forced to take jobs that paid peanuts, ‘Black’ hospitals that really were almost like badly run clinics, disappearing neighbours and relatives caught my police to be tortured, aunts fleeing into exile out in Germany and the US, and high birth mortality rate and you have a time when things were much worse than they are now for us Africans of Africa.

But, he also said I wouldn’t know as I wasn’t born yet. I was too busy laughing internally and wanting to tell him how old I am but then his staff called him and I couldn’t.

I wonder if anybody anywhere will ever guess my real age. Even at church there’s a newcomer who was shocked when a young man we once even counseled before his marriage referred to my husband as “old man.” But he’s younger than you! The man exclaimed! Oh my! I therefore bet he also thinks the man is younger than me too. Maybe if my husband looked HIS age, they’d know I too was older?? Or they’d just think I’m like those celebrity men who date women 20 years younger than they are…

So yes, that distracted me too as he spoke and I didn’t get a chance after he was called, to revisit that comment. But I live the reality daily. Life was not ok for us in the 80’s. At least now we have the chance to earn what they earned. And some of us do indeed earn it and can help others who are unemployed or orphaned.

As my nine year old said, “So..If you and daddy are also helping Aunty P” (her birth mom) “then dad had better not lose his job or they will starve even more.”

Yep, and so would another dear one waiting for the job she qualified for but willing to do the ‘menial’ work reserved only for us previously unskilled, un-educated by Western standards people of the soil.

Things are better but will never be ok till the kingdom comes.

Zech 13:9

Grace by any other name1 Comment

Many are called, but few are chosen. Few allow the fire to refine them, to purify them and to try them. Are we surprised?

Suffering is something most of us will flee from. Doing what suits us is what makes most sense. What makes me happy is surely indeed what will make me happy- for now. Who cares about eternity? “Eat, drink, be merry, for tomorrow we die” is a philosophy most take to heart.

It is easy to live an easy life. No sacrifices required. No forgetting self in order to serve the other. No swimming upstream while other fish glide comfortably down. No stress. No need to change the heart I’ve been born with. No need for the purifying, refining fire.

But, that’s not the path I chose. Even as a child, I knew I wanted to be like Jesus. I wanted to love Him and when I turned 17, just wanted to live for Him. But what a journey it’s been. I can’t think of any aspect that is going smoothly. My body is fighting me day and night. The fatigue is so overwhelming that I want to cry when I have to teach. The teens- only one passed all final exams-so now I’m busy printing Computer Science stuff for the tutor and he. Educating my special kids is taxing and difficult. You’re constantly researching and reading too when you get a bit of time to yourself. Or you’re recording and then editing videos for the children.

This path of loneliness, of having my encouragers living far away from me either by marrying outside the country, or just because of distance, is lonely indeed. I would sink under the burden of being caregiver every single day. I’d have long found a way to disappear had it not been for Grace.

Living it with grace is what will help me turn out like gold. And so, though I can’t handle it, I submit. “Not my will but Thine.”

I want to be the third that will say the Lord is my God. I want Him to say that I’m His. So, I wait. I pray I remain malleable under all circumstances and that someone will be blessed by my presence, words, acts.

Starving

Grace by any other name1 Comment

This is one rich verse. So many in society do one or more of these that I shudder for them.

I had a dream two nights ago that I had hired a PI to investigate my husband who I thought was hiring someone to kill me. We were gathering evidence together so we could report him to the police.

But then, the last meeting I overheard, the hired gun asked, “So where does your sister live?” The relief was immediate. And so was the joy that finally he’d seen the light and was getting rid of her. My PI and I kept quiet and allowed his plan to go ahead. (Haha, that was the first time I was evil in a dream.)

Parts of that dream are based on reality. There was a year I contemplated divorce and my greatest joy was in knowing I’d be free of certain relatives who have spread my problems out to the entire family-sending screenshots of my conversation to everyone, mostly people I didn’t even know, and all, people who never texted to ask how I am. Thankfully I wasn’t swearing or calling anyone names. I had actually commented that it seemed what had happened was a family curse because every other male sibling had done the same. But still, sharing my heartache to randoms was evil. So was lying about why I then blocked her and never confided in the person again. I didn’t know about the lies until a relative asked me if it was true because it didn’t seem like me.

Yep, cos it WASN’T!

So yes, there is indeed a relative that is a liar and makes false promises and is a backstabbing gossip. But I would tell him to rather just stop speaking to them and not commit a crime!

Adulterers cause terrible wounds that can’t ever be erased. Oppressors cause pain and suffering. Imagine hiring someone to work till 11 pm at night and only giving them R2000 salary! Many domestic workers and nannies are basically being used as slave labor! God will avenge them too. Same with oppressing the widow and the fatherless instead of caring for them and surrounding them with love and support.

I’ve discussed how xenophobic our country men here are and how the hatred becomes violent. Looting of small shops they’ve worked hard to stock, and even murder are the order of the day, sanctioned by an entire community in many places. The ones who don’t join in, turn a blind eye and don’t report the plans nor the criminals after the attacks have happened.

This scripture is so relevant to us today.

But back to the widows and the orphan. Here in South Africa and I’m sure in many other places, we have people dying from starvation. See, here, we don’t have benefits for the unemployed. They are on their own unless people take their fate into their own hands. Children are dying from starvation, people! Mothers and fathers… People who could give even one boiled egg to the unemployed don’t. If every other poverty stricken but at least employed though poorly paid relative gave their little, it would help! But they don’t. They don’t give even the little they can. And so people are starving to death in my own country.

Years ago, before we got married, (so it was 25 years ago), we decided that we would help our parents if they became poor, and anyone else who we felt was deserving. For the past few years, that has been an unloved orphan and more recently, our daughter’s birth mother. They are our attempt at fixing what is broken. I wish I could give more. It feels such a pitiful offering but to the receiver, it isn’t. And that gives me so much joy. Others have been so entitled that they even ask for tech-for cellphones… What?? Others claimed they wanted to borrow because the situation was urgent. But never repaid-and they WERE employed. The two (plus more) we are helping now have NO employment at all. Zero. And no family coming together to care and sustain.

My husband got a bonus and so we were able to give a bit more than we usually can-just for a few months. Spreading it out and sending it unexpectedly. That’s fun!! The pain of knowing someone is going to bed having eaten nothing the whole day is indescribable. And birth mom also has her daughters and her grandchild to feed too. I’d go crazy with depression! She sends in job applications but nothing. Story of everyone’s life, university educated like our one friend, and not. Yesterday was even more poignant when the other loved one told me that this month and last month, she didn’t have to worry about where food would come from.

The heartache! I can’t get over it. Yes we give but it can’t last a whole month. And that is always my sorrow. The knowledge that she is on the knife edge hurts. And she is one of the many who are suffering in South Africa. They are..and they are just a few out of hundreds of thousands!💔

Please, I beg you. If you know someone’s story and can give even R10, do so! The one family we helped years ago could live on that R10 for a few days at least. Church folk ignored their plight and they would survive on a dry loaf of bread from a R10 they’d borrowed from a flat mate. It can be the difference between survival, and dying of starvation. Your little, God will expand. Please never think it’s too small. To a dying soul, a slice of bread is worth eating. worry not at how little your gift may be. Just give it.

Please, please give if you already don’t. Not to the drunk, not to the addict in your family. To the deserving everywhere and anywhere. To the orphan and the widow. Both sets we give to are orphaned.

Love. Give. Share your orange, your apple, your sandwich. Like Job, search for those who need help and give. Please. 🙏🏾

Prompted by a comment

Grace by any other name1 Comment

How are things going with my not very predictable, and very physical daughter? This post was prompted by a father of an autistic child who commented under the post in which I spoke snot my daughter hitting me and hurting me.

Sometimes good, sometimes bad. She has no real texture she prefers anymore. She will eat porridge-y Pronutro just fine, and oats. And sometimes..not. Today was one of those “Not oats” days. She came into the house, saw the oats on their table and came storming to the kitchen yelling angrily. I knew what that meant. This time poor Micaiah who happened to come into the kitchen got caught in the crossfire for the first time (in my presence. ) I didn’t know how he’d react when I was telling her to be kind so didn’t even have a chance to warn him to rather stay away instead of getting close. But, it ended ok. Well, it ended ok for him. He left and then when I replaced the oats with original flavour Pronutro-which she keeps gesturing for-she knocked the bowl out my hand and cereal went flying.

I’m sorry the camera glitches so you can’t see it all.

This is what life is like here. Not ALL days, but MANY days. I will need someone to be nanny who understands the unpredictability but will remain calm under fire. I think of a baby who was hired by a lady in a South African homeschool group. She took a month holiday and went home and they had a sub. She wrote to tell the mom that she misses her autistic son who is so loving despite how often he hits her. I’ll need someone like that unless I miraculously find a very affordable therapeutic centre for her. If we lived somewhere like in the States, I’d definitely have an aide for her and send her to one of their special schools. But, I’m here, not there. And we have nothing here. The government only even starts putting our children on their two year plus special school waiting list after your child turns seven! AFTER. And the waiting list is long! Can even be longer than two years. It’s BAD. I really don’t know what to do and am constantly stressed to the max. I’m struggling.

Then we come to the middle two. I’m meant to brush their teeth. And I’m starting to struggle there too. Just folding laundry has been tiring and difficult. My arms have been giving up on me and feeling strain. This week, it’s gotten even worse. I can’t even fold ONE SHEET! I have to put it down half way through the process. One sheet! I was telling my husband that I wish he could feel what I’m feeling. I wish everyone who expects too much of me could feel what I’m feeling too.

I really DO need to stop working.

It became evident that what I’ve been wanting to do is truly necessary (finding them educational and therapeutic external centers) when I couldn’t even brush one child’s teeth without stopping in pain. One set of teeth! But my arms got tired and were extremely sore. Just brushing my son’s teeth so I had to stop and rest a while. What kind of a life is that? Thats the fatigue we mean. It stops us moving. It makes us wonder if we won’t collapse. It is overwhelming.

I need a second mother for my children. A kind, honest, gentle, able to drive, patient, mother to teach. I don’t think they make others like me. I haven’t even met anyone who doesn’t lose their temper at their own children or relatives. How much more when dealing with mine?

Clothes and shoes constantly left outside overnight to get rained on, or for heavy dew to fall on. Socks getting lost by my mine year old daughter. Underwear thrown out the window by one of the middle two. Daughter still making holes in her clothes. Eight year old throwing food down the toilet. Both extremely easily distracted. I’ll tell my son to go wash his face and he will stop to ask me why babies use pacifiers instead of doing so. Then he will forget I ever told him to go. Or my daughter will go get undressed but you’ll find her sitting down with only one sleeve off, reading a book.

I need someone like Job.

I need them NOW. So yes, it’s been up and down. I’ve managed to divert some anger and get my unpredictable girl her to be less violent. I’ve verbalised her feelings but told her straight after that we are kind and gentle and hug each other, we don’t push. Sometimes she hears and then squeezes me for a hug. Sometimes not.

Homeschooling while terrible unwell is another level of torture. I can’t even finish the next day’s lesson and therapy planning as I’m so in pain by 20:30. Hoping for a breakthrough. And a break.

In the meantime, I grasp and clutch to myself every comedic moment and every insane second. Like my four year daughter who only partially listens when I’m teaching -doing what I tell her, but also planning her own thing. Above, she decided on her own that while I’m reading to her, she’d suddenly draw two C’s. And she did. I’ve never had a student like her before. She marches to the beat of her own drum in every single area of her life. It’s funny. It’s tiring. It’s frustrating when her drum beat is out of sync with the symphony I’m trying to conduct. When she wants to do something totally out of line with what she’s meant to do. And she does most of it, with a smile and easy confidence that her wish is not disobedient nor distracting.. and never negative. So what if she can’t say without stopping to want a very specific book we can’t find and she won’t eat until we find it and put it next to her? So what if she sometimes even coughs and splutters a because she’s chewing and singing at the same time so some food goes down the wrong pipe? She will be warned by me. But she continues and then with watery eyes say, “Oh, I’m choking!” 😩🫣Her not very talkative sister does the same too. She will jump and spin with food in her mouth and sometimes cough and splutter when the food goes down the wrong pipe. I don’t know which is worse! Their extreme activity instead of eating- wondering up and down and going around to find toys and books. Or the middle two and how they will take an hour and still not finish a small bowl of food. And it’s not because of the ADHD meds that reduce appetite. They do that even without the meds. To feed them less would be to under feed them. But to make them sit for three hours would mean I don’t get time to teach. So I end up telling them stop and learn then eat again after a short school lesson.

Told you I need a breakthrough.. and a break. The mind can only take so much constant stress before it breaks. And that’s a mind in a healthy body. Even healthy parents of even one neurodivergent child can’t cope if the child is challenging. And I understand it. I need a break. We all need respite. We all need hope and help.

The Uber Driver

Grace by any other name2 Comments

I am in Pretoria. He is Black. He drove me here from the airport in Johannesburg. He asked me where I am from. I told him I am Capetonian and asked where HE is from. He said he’s from Zimbabwe. A Ndebele speaker. He’s been here 13 years but doesn’t feel at home. I’ve always heard that Joburg is very xenophobic and he confirmed it. He is always reminded that he doesn’t belong here. He hates it and wants to go back.

But go back to what? No electricity, drought, bad governance? Cruelty and violence? Hospitalised patients having to go buy their own bandages and not getting proper care anyway? And that’s just the stuff I know of. I don’t know what he himself has been subjected to.

We spoke about how there are Zimbabweans in every area of the economy of South Africa. As he said, “Not here amongst us lowly Uber drivers, but even in Boards!” Very true! I told him that one of the most respected surgeons in the Cape is from Zim and I love him too. They are everywhere. They are working everywhere and working hard.

I told him how in the Cape, the White folk who talk about them talk about how hard they work and how fast and careful they are. Better than us South Africans. I’ve heard enough Xhosa speakers whining about their duties to believe it. They’ve come to work. They’ve come to work well. We want to do the bare minimum and get full pay. (In general)

Our other failing is pride. They will come with their degrees and will take any job that puts food on the table and be proud of it and work hard at it. Our people think menial work is beneath them so would rather spend years unemployed because they are waiting for jobs they studied for, rather than seek employment everywhere- cleaning, kitchen, waitressing, nanny etc . Then they end up like a sibling of mine. After waiting years for a ‘high’ status job and leaving the less skilled work that would have given her a salary higher than even cashiers make, she ended up getting that allegedly higher status job but earning much less than the au pair job I had suggested she try out for. We don’t think logically. It is not difficult to quit a nanny job. And it’s easier to use your time wisely and feed yourself.

That is how Zimbabweans think. All work is honourable. All work is necessary for someone to do and everyone needs to eat. If the job allows one to eat, why the pride? I bet many of our regularly protesting “unemployed graduates” are only looking for employment in the field they graduated in instead of looking for EMPLOYMENT. And so, the so-called foreigners come fill the gap which then makes our illogical South Africans angry. It’s so stupid.

Of course, that is a generalization. Some of us are humble. We will do anything our hands find to do while hoping something in our field turns up. And also, not all Zimbabweans have come here to work.

As he himself said, too many of them are criminals. They then give the rest of them a bad rep. Oh so true! At last he said it, so I didn’t have to! I hate importing illegals so they come and hurt us. We already have enough of our own criminals.

Another thing that shocked him was that there is no high class suburb where there are MANY black people in my province. But in Gauteng…There’s a huge thriving middle and upper class. As we drive past a mansion, he commented that it wouldn’t be surprising to find that a Black person owns it. That’s not the norm in our place. He says here, the White people tend to complain that “the Blacks own everything!” Man, in the Cape we don’t even go to restaurants like the way the ones here do. I went out with a White friend once and she was the minority in an upmarket mall. The sushi restaurant had more of us as customers than in the Cape where we are the employees.

South Africa is a land of contradictions. A land where hatred rules. Here, foreigners are hated way more than we hate them in the Cape. In the Cape, we are hated by everyone- Indians, Coloureds and Whites. And everywhere, we have internalised racism- where the black server, black cashier will be so respectful to the White customer but not to the Black one. Where security guards follow the Black shoppers but not the White.

And we both agreed that besides the Malawian gangs that have started brutalizing people in this province, Gauteng, they are out of all the foreigners here, the sweetest and meekest of all Black Africans. Keep to themselves, don’t cause problems, willing to work hard and no pride or arrogance in them. On the other hand, you’ll never see them in the Boardroom.

Hmmm

As for Zimbabwe itself? He blames the lack of cohesion, of having different cultures to what we have here, for his having two children with different women, none of whom are still with him. He said obviously it takes two to mess things up, but they just never saw eye to eye as he thinks he would have if they too had been Zimbabwean.

His uncle tried to go back to Zim after having lived here since 2007. As we said above, they don’t feel welcome and are hated. But after a year, he had to return. No money. The people have no money to spend. He tried again after saving money to start a different business. But again, he left and this time is in Germany. They want to be home. They don’t want to be in the diaspora.

His friend also tried. Failed. Sometimes he thinks of giving up too. Would you want to spend 13 years doing unskilled work in a country in which you are constantly reminded you don’t belong to? Never earning enough to buy property… Never earning enough to build a family.

We both laughed at how White folk keep saying we should not have Black leaders because they will mess the country up like Zim got messed up. He can’t fault them. Their country is messed up indeed! What we can fault are the dummies who don’t know anything about Zim and keep saying, “They should go home and vote out their ruling party.” Seriously?? The ruling party is ruling by force and violence. You can’t win a war in which only one side has weapons and isn’t afraid to use them. You can’t win when if a village has been known to have mostly opposition voters, the ruling post comes and stacks them for voting’ wrong.’ Zimbabweans can’t win when they don’t have a democracy but are instead ruled by despots.

Our continent is bleeding. So many beautiful countries but no jobs. The colonizers came, took over, established a new way of life but only kept the best jobs, best education for themselves. Best training only for those who were their descendants. And now we are stuck. We have politicians who want to live like ancient African kings and chiefs-complete rule, adulation, allowed to take anything they liked- instead of leaders who want to fix the economy, the infrastructure, the nation. We have many citizens, but little training.

We are stuck. But, I enjoyed the chat. I’m starved of adult conversation. I appreciated the long ride to Pretoria.

What’s a mother who can’t mother?

Grace by any other nameLeave a comment
“Mommy, I’m her baby!”
I played this purely for the bird☺️

The rheumatologist believes it’s high time I hang up my gloves and stop teaching.

The rheumatologist is VERY worried. I came this close to crying because she kept exclaiming and saying she’s so sorry and it just almost overwhelmed me. I had gotten up when she came in to call me, telling her, “ I’m surging!” when she asked how I am, but the long trip to her area, and a long wait meant that when I stood, my leg screamed out and I couldn’t stand properly, couldn’t walk properly.

“Oh!! What!? When did this start?? You’re not ok!”

I told her, “Honestly, I’m not ok at all. It’s been bad.”

I told her it’s been at least a month now. A month of horror. She didn’t even finish the examination because my legs wouldn’t move. She tried to bend my right leg this way and that way but could feel the joint resisting. My fingers, wrists, hands and extra kilogram all tell the story. A body in crisis. A body that can’t move without stiffness and pain.

She has doubled all my medication. Doesn’t know how I’m sleeping, I told her I’m NOT! Every type has been increased. From six of one type, to 12 a day. From two of the opioid, to four. And I must double my anti inflammatory for the next week and then tell her how I am. Only when I got home did I realise she still thought I’m on the vertigo inducing one. So I’ll try again very slowly and see how it goes this time. After the week of double the anti inflammatory, I will then start on a stronger dose of the anti inflammatory. I don’t know what the plan will be if I’m not any ‘better’ in a week. She also injected me with cortisone.

She discussed schools and homes with big yards close to her and to special schools. And she was shocked that I taught the teens. She thought I was homeschooling only the young four because of special needs.

So yep, she’s looking forward to them passing. So am I! Please let it be so!

She has begun the process for requesting more Cosentyx. She said she loved my motivation letter and that I’m not the norm. Most of her patients don’t fight with the medical aid company, they make her the face of their fight. So it felt good to not be alone.

I drove home past shops I wanted to get veggies from. I’m in too much pain. And then I got home. Went to collect a few items of laundry that I knew would need to be in front of the gas heater or iron as it’s too late in the day for them to dry, came into the house ready to collapse into bed.

But..my angel who refused to go for a walk with her siblings comes out with big brother and pulled me around. She wasn’t sure what she wanted at first. So she took me around the house a bit, then into the play area then finally decided she wanted me to watch her jumping on the trampoline. And like every loving mother everywhere, I stood for as long as I could, and I watched her, spoke to her, loved her. Smiled back at her. And walked away after long enough that she was ok with it. (See, when I had tried to escape before she got on, she kept pulling me back to her side.🥹❤️❤️ If that isn’t as loud as “Mommy!! You’re back!! I missed you!” I don’t know what else she’d need to do to show me. Not when she’s shown me in her own very clear way,

So, I’m home. Thankful for all the doubling of my four types of meds and hoping the injection also starts working. And then, we see if Cosentyx will stop this level of torture

And yes, she looked at my blood test results and was NOT happy at how the inflammation is. Are any of us?

As for the special school issue? I’ve tried and searched and desperately searched this week. She too only knows of two government schools and they’re both too far for me to drive to every day. (They’re in her area.)

But what about weekends anyway? It will still all be on me. The videos, the lack of rest, finding each of them activities, feeding, preparing food, handling the screams and the hair pulling and pushes. Trying to stop the nine year old from banging on cupboard doors when the twins are trying to sleep, sorting out her screaming brother.

I won’t hide this truth. I am a Christian. I believe God have life so only He should take it unless I’ve prayed and He has clearly said I will die soon. Only then would I believe voluntary euthanasia is justified.

I’m not at that point yet where I am sure He can’t change His mind and free me of my suffering. But I did wonder. “Was it sin when kings fell on their own swords rather than to be captured by the army? And if not, would it be sin if I were to fall on my own sword and end this suffering instead of being even worse than this? Would I miss out on a peaceful and God-filled eternity if I stopped living? If I stopped the unbearable suffering? Or would God raise me and tell me that He would have understood back in 2022 when I started begging to die, if I’d taken matter into my own hands, knowing how much worse I was when I finally breathed my last?

I don’t know. And so I have no choice but to live. But it stopped being a HAPPY life long ago. Just typing this has cause excruciating pain in fingers, elbows and wrists. When it’s all your bones crying, you end up saying,

I really, really want to die.

Rheumy Tomorrow. Museum the Other Day

Grace by any other name1 Comment

Telling her I’m giving up. Or rather, I have no more hope left in me. I’m sucking up all the pain tablets I can but getting not enough relief to even feel any relief.

Is there nothing more we can do for pain? Should I see a pain specialist? What can they do? Maybe I should! See, I knew this blogging thing was good for me! I hadn’t thought of going to a pain specialist. Rheumatologists seem to focus on the disease and not the pain caused by the disease. Surely there must be more. I’ll ask her what she thinks.

I did my second Cosentyx injection this Monday and bled for the first time ever. It wasn’t bad. Just weird. Unusual. I’m going to only do my thighs seeing as it’s once every 28 days anyway. I don’t think there’s any risk of the area becoming thick and hardened like with weekly injections. I don’t know if

Life continues as normal. One child pulling my hair and pushing me harder. Some days she’s so happy. Her twin is still into Pharaoh. And school is still hard on me. I’ve failed to find schools that don’t have a uniform, are affordable, and in a safe area.

But the good news is that my teens are definitely- unless they fail their final exams – going to the University of Pretoria next year. I’m so happy for them! I last reported that my son got accepted for both his choices and that my girl got her second choice. Last week she got an email stating she’d been accepted into the The Faculty of Health Sciences!! She will do her beloved Nursing!! Woohoo!

I’m so happy they are going to live their own lives. As I state in a video I posted last week, my mother stopped me from both my first and second choices (I wanted to be midwife or am social worker) because she said they weren’t high class enough. By having freedom to choose, they are living my dream, and it doesn’t hurt that one dream is nursing!🥹☺️ If she changes her mind, I won’t care. I told her dad that they might find they are actually more drawn to something else so to give them some leeway. Advocate Mommy!

We went to the SA national history museum this past weekend. As expected, our Reo motored through and out as soon as possible. I wish she could tell us what she feels. Too much space? Doesn’t like the aircon? Too dark? Too many weird people? She didn’t even glance at any of the exhibits whereas her twin was talking nineteen to the dozen!

You can find the video I posted with more (poor quality photos) HERE.

Edit: I’m not going crazy or overblowing things! Well, I knew I wasn’t anyway! I saw my blood test results after typing all the above. My inflammatory markers have never been this high. Not each time we’ve tested for them, at least. They’ve even gone down a normal 2.4 when I was on Enbrel – for a short time. Otherwise other times it was 6, 5.5… This time it’s 14.4 and our standards say anything above 5 is “High.”

This will really help with my case! I’m truly suffering and need more help than I’m getting. Clearly the anti inflammatory tablets aren’t helping and the Cosentyx hasn’t started (yet.) My liver is also starting to complain. Thankfully it’s not too bad at all. Just gone higher than the norm. My AST and ALT are usually around 7, 18 or 10, 18. This time they were 22, 24. I’m not worried YET because the highest normal is 36. And, my kidneys have stayed stable. It could be worse! But that is not much comfort given how terrible I feel day and night.

Something surely has to be changed, right? Or we really will do nothing until two months’ time when we re-test? How ‘dead’ will I be by then?