They said I should write a book

I know I’ve written as nauseum about an autistic, non verbal adult who wrote a book. The reason why I can never forget the contents (I am bad with titles) is because it scared me about my children. Or specifically, my daughter. He writes how he has so wanted to SAY to his mother, “Mom, I love you so much. Thank you for how you’ve cared for me all these years. I definitely appreciate it and I do see it.” He states how he knows it would be the best thing in her life, for him to speak even the sentence “I love you.” But he cannot. And for me who loves telling people how grateful I am, to never be able to say it to a very loving and sacrificial mother would hurt me, especially knowing she wishes I could say it and everything else that others can.

So I prayed and hoped my child would not be an unreliable speaker. These are the ones who from our angle as caregivers, don’t always talk and if they do, it’s not much. I feared it because of the frustration he would feel when he would try to say a word. From the auotsyic’s angle, it’s also terrible. Words desert them when they need them the most, or as he said, when they want to be social with their families but can’t. He gave a vivid example of how he could be in the backseat of their car as they travel somewhere and he then sees an aeroplane out the window. In his head he’s thinking he will say, “Look how fast that plane is going!” But his mouth and brain betray him and all he says is, “Dog.”

Can you imagine how horrible that would be!? I didn’t want that for my daughter. But for over a year now I have feared that’s where we are. Remember the time she used to call her father “ dinosaur?” Perhaps she was planning on saying “Daddy.”

She no longer calls anyone by any kind of name unless echoing something we’ve just said. Like if I tell her, “Let’s ask Bk,” then I’m a very angry tone she will repeat, “BK!” But today she said dolphin.

Let’s give context. I was resting my leg that has the incision that opened up again at the top of it, and eating green grapes. She came in and looking at me, looking at the grapes in a very clear, “You KNOW I love grapes, you WILL give me those grapes!” she said, “Dolphin.”

I immediately asked her if she wants the grapes, handing them to her and she took them and ate them all.

Dolphin isn’t dolphin.

And that stinks because she’s “trapped” like so many non verbal autistic have said they are. Words there but brain not wanting to cooperate. Probably similar to an aphasia patient recovering from a stroke, maybe?

Dolphin isn’t dolphin. So, what were all the other animals names she’d say so meaningfully while staring into my eyes like she’s asking for something?

I hate autism.

This is an exchange between birth sister and me about the state of her mother. Her mother has had mental dips ever since meeting the last child’s absent father. She had been doing extremely well at her coffee place job and customers had even been emailing the manager too compliment her.

Then she met a guy who was delivering stuff, if I recall correctly. They started a relationship but there were red flags in abundance and I warned her to dump him. She agreed she would. But after a few years, she was pregnant..by him.

I cannot explain how angry and SAD this made me. Why do we do this? When I tell you something will fail, I’m never wrong. I told a very close relative the same thing and indeed, the marriage in name only, the family member already had a replacement in place who is more of a father than the father ever was. ended with him dead, but she’d been trying to get a sheriff to hand him divorce papers. Another is suffering. Another, I sent red flags warning photos. I wish someone had sat me down and shown me that I don’t need to .. Ok, this isn’t about me!

But it is about me because she’s my child’s mother and I cannot ignore her. When she fell pregnant, he wanted her to abort, but first she didn’t want to. By the time she realised she wouldn’t be able to raise a child, it was too late and again, her home attempts failed. So there she is with her unwanted pregnancy and a man tearing her down. And sadly the genius of true evil is that it mingles truth with cruelty. He told her she was and had nothing, so how did she think she’d be able to take care of a baby? The question is valid. She can’t. That’s why she asked me to take the baby. He made it clear he’d never be involved. He kept his promise. But he also wished she’d die. He also told her her positive status would kill her and the unborn baby. He told her she’d be thin and sick and nobody would want her. He was, is, evil personified. Everything I feared and more.

And he managed to tear her down more than her own cold hearted mother ever did. Confidence disappeared. Work ethic, left the building. She just stopped going to work, She started jobs and just left. She got huge inferiority complex issues, feeling like she’s rubbish. I shared before how if she was in a taxi, she’d think that the passenger next to her is thinking how pathetic she is, she’s a piece of dog poo and isn’t good enough to be amongst people.

You might recall her daughter and I conspired in January to have her admitted to psychiatric hospital. Except the psychiatrist who had only been seeing her once a month said he’d continue but assess her fully and also see her weekly.

Now you can tell from the texts that that has failed abysmally. The woman is still a shadow drifting along. The only place she goes to is to the clinic. When we send money, the daughter goes and does their shopping. She is strong enough to hang washing outside. That’s the only progress we’ve seen. She is still too ashamed to text anyone. She lies in her room and sleeps for hours, once even promoting her poor daughter to check she had not taken an overdose. What life is that for a 20 year old?

And then daughter feels guilty herself. She added to the mom’s stress by falling pregnant after multiple warnings over YEARS, to never ever sleep with anyone. To focus on her education but that if she wanted to, to go to the clinic and start birth control.

But she didn’t.

And she doesn’t know which of two boys – conceived in Matric (final year of high school) is the father. So she has mega regrets and shame herself, now two little ones (son a DnD her two old sisters) and a mother to raise.

Man, the struggles and challenges and loneliness we all suffer from are hard. It is very difficult to ignore a capable human who is not doing anything to make your life easier, to struggle with children when there’s an adult who could be helping you. It’s a pain that doesn’t go away. You never accept it. You never stop feeling the sting of being alone when not alone.

And so, in the last few months I’ve been hinting that someone needs to talk to the psychiatrist and tell him that yes he made his diagnoses but his meds and weekly therapy have achieved nothing. She still lies in bed, no smile, no laughter, the only emotion is anger with her little two year old who birth child and I suspect might be neurodivergent. She can’t handle the child’s meltdowns so she beats her then feels regret. Vicious cycle. She never wanted her children to feel unloved like she was, but she’s doing exactly that. And enough is enough. Birth daughter got the gentle memo I had been sending and finally decided to go speak to the psychiatrist herself, and that’s where the texts come in.

I don’t ever want to tell someone what to do when the outcome is unpredictable and they might end up feeling worse after taking my suggestion. I didn’t want to tell her to go in with mom and tell the doctor his plan failed and he should have listened to us when we wanted to get her committed back in January! I don’t know him, but the fact he didn’t hear but decided to treat her himself spoke volumes about his ego and self confidence. Misplaced! It needed to be her idea as the one going in to go speak about her mother. And finally, she did it! I’m so proud of her!

So, Lentegeur is a psych hospital.

Eerie, given how our girl’s paed wants her in one too.

Now we wait. And hope and pray. I hope they operate the way the psych hospital we were told about does, where they also interact with the ‘caregiver,’ not just the patient who isn’t aware of the impact of their disease nor the things they should be doing but aren’t. They don’t exist in our life as they should. And many who are deeply disordered don’t realise how disordered they are.

I hope she will be given an admission date that isn’t far away. She needs to get as much help as possible. If worst comes to worst, we will be able to say we did everything we could.

Oh, how I wish he’d heard us back in January.🥹

You know, for a few years now, I’ve lived a life where Ankylosing spondylitis is only my disease. And that of my ten year old, to be fair. She asks how an appointment went, she tells me to rest. But she’s not an adult. And sometimes, I yearn for that adult concern. And it has come in abundance- as I’ve shared in the recent past!

I don’t deserve the thoughtfulness in the questions I’m asked. It’s grace that brings me love from God in human form, so, I shall respond with gratitude. As you can see above, nothing heals properly. I still have the mark from what I assume was being scalded by my hot water bottle. But also, the swelling where they prised the lipoma from inside me is still present. Something the nurses don’t like.

Speaking of nurses, we finally removed sll the stitches yesterday. She didn’t like ‘how’ my wound has healed. It’s not normal. And because the skin is still not fully aligned, she put steri strips on to force the edges together and a dressing to cover them. She is confident that after Wednesday everything will finally be ok. But if it opens up again, I can go right back to them. PLEASE NO! I keep thinking the swelling is the cause of the extra pressure on the incision too. I will give it a month or two, and if still present, ask the doctor if that’s normal.

BUT I am thankful for lovely nurses this time.

A friend asked today if I’m going to resume my Rinvoq. Man! I don’t think anyone in my house even knew I had stopped it for the sake of this surgery. That’s how alone it is here. But, I’m grateful that my phone has linked me with people who do remember that I had to stop taking it way before my operation and wasn’t well enough to continue. I am grateful for that amount of thought. Thankful for all sisters.

I am thankful that my friend was skeptical about resuming Rinvoq at the time the new nurse at the rheumatologist’s office had said, one week after, as the complications prove that would have been a worse disaster so she agreed with me to keep myself off for as long as I believe. I’m thankful for someone who puts their head together with me and thinks with me, a team mate, a partner.

I am thankful for people who love children as much as I do. People who worry about them so much that it’s all they can pray about. People with a passion for children who aren’t theirs by blood, are my kind of people. Being able to chat about that aspect of life makes me happy. I love children and anything that happens in our circles that impacts children negatively, impacts us. And I love that. It’s heartwarming to have people who look outside themselves.

I am thankful, so thankful for childish enthusiasm. As you might know, we are waiting to have our daughter assessed for conduct disorder or impulse or mood disorder. She has bad moments and anger and LIES. She acts out anger based on lies and that is scary. She’s also very sensitive to any correction and retaliates with how much whoever is correcting her clearly hates her. Last night, she was pushing her brother. I told her it’s not good to push. She yelled out about how everybody hates her, even mommy and nobody wants to listen. Instead of coming to three of us older people, she was pushing him so she could brush her teeth alone in front of the mirror.

But there’s childish enthusiasm and humility. They found an old large puzzle and put it together. They (the two girls) came buzzing with excitement to tell me and call me to see. Meanwhile I’m trying to rest my calf so I don’t pull wounds open but how could I say no? As we walked to go see, they explained that there were missing pieces that they couldn’t find.

Besides the hilarity and awe of hearing about Siberian chipmunks for the first time ever, I love how Ammy, my ten year old, made sure to tell me that if it had not been for her little sister, she’d have never been able to finish the puzzle. She emphasised how lost and confused she was. But, little sister saved the day. That level of humility is what too many are lacking.

And it will be our downfall.

I’m grateful for someone who thinks of checking in, for asking how treatment is going. As for my leg up there in the photo? Still painful and swollen today as it was yesterday when I saw the nurses. Let’s see where the journey leads. Thankfully, I have people to watch my step and cheer me on.

I’m in an essay with some other great folk! Woohoo. Making a small difference means a lot to me!

When I got married, I meant every single word I said of my vows. All of them. Including the portion, “and so I follow you AS you follow GOD, that our home may be a praise to Him.”

This was not a match made in heaven. Not for me. I had already forgiven and reconciled twice due to his being unfaithful. I believed that forgiveness HAD to mean reconciliation. I didn’t even think that if adultery was a death sentence for the adulterer then clearly forgiveness was not a reunion of the betrayer and the betrayed. It meant not harboring any evil feelings. I was stupid, young and still very new to true Christianity. I felt that I too was imperfect so I should give grace. And after all, he wasn’t insulting me like my mom did, so he must have meant it when he said he loved me. Words are nothing. A man who doesn’t care that he has hurt you does not love you.

There were other warning signs which I’ve mentioned in previous posts. And others like giving his hoodies, sweatbands to any and all girls like I don’t exist. I should have seen that as a big warning especially after I told him it hurt me and he didn’t care. And then a second warning came in the shape of our head elder’s wife who told me she’d never have her husband, if he was a boyfriend, give his clothes to other girls. And he still didn’t care. I didn’t matter.

I thought anyone who would proper marriage planned to be a loving husband. I spend decades silently praying when the sarcastic put downs came, the I’m more knowledgeable than you comments that were actually false. I did try ask why I was being spoken to like I’m an idiot.

But let’s fast forward. Below are our church rules.

My husband was present at the marriage of a sibling who violated point number five. He was present while secretly back with his affair partner. Nobody in that family of SDA is SDA. And yes, secretly BACK WITH HER. The first time, I think I kept it secret I don’t recall. But I did then tell the elders and told them that I and prayed for him and it was now their turn to take over his salvation as my prayers and pleas meant nothing.

They knew everything. That I had found out about her, and that he’d claimed he’d leave her, then he went back to her. Read point number 5. Even without speaking to him, does that sound like someone who is repentant?

Did they ever ever get him to confess, repent and admit he had sinned against God? Did he ever take accountability and promise to use the future to sit at God’s feet and learn from him?

As for bringing the church into disrepute. The woman who organised flights must have known he was being unfaithful with her. He had the brazen guts to ask her often to seat his affair partner next to him. So, that’s public member one. Then the affair partner who wasn’t SDA was the other one who was now learning that Adventists don’t keep their vows. And then the third member of the public was her enraged husband who phoned him in extreme anger telling him he’s a fake Christian, asking him if this (cheating) was what his “church teaches.”

Not a single one spoke on this. This was the worst part for me. My husband misrepresented me and all the faithful SDA in the world by what he did. We do NOT teach infidelity. We CAN be faithful. Even in the week after the first time that I found out, when some guy flirted with me at Takealot, my immediate thought was, “Really? I’m married, dude!” But then I remembered that marriage doesn’t mean anything to some people. But nobody in leadership mentioned this aspect of making us look like loose immoral churchgoers.

And nobody mentioned how much worse it was given he was a preacher man with a very large sphere of influence. Therefore, he needed to have been MORE above reproach than anyone else in the world.

And nobody cared that it showed how far away he was from God while pretending he was his spokesperson. A sibling of mine said, “Yet he acted like he was God’s brother!?”

There was no attempt at all to ask ME if he was repentant. And no he wasn’t. He said it’s because I don’t know business so he could speak to her about business. Yeah, and all his male business friends?? He said it was because when he would phone randomly during the day, I’d have the gall to be teaching out children instead of being in the phone to answer whenever HE was free. He said it was because when he phoned, we got interrupted by a crying baby. It was all my fault. How dare I be a mother? Why was I working and teaching instead of keeping my phone on so that any time, he can reach me like I’m his servant?

That is not a repentant sinner at all. He doesn’t even see he’s a sinner. But they never cared to ask. One elder boldly told me in the worst period of my life that “I still admire him.” You can’t get true discernment from an elder that admires a sinner. Any sign of repentance they sought from him was fake, and they accepted it because they wanted it all hushed up. I was even told not to tell anyone.

My church after this, became a place of pain. No caring about our reputation as a church. No caring that he led a woman into sin. No caring that he was a leader who actually should be led and taught. No attempts to ask me for signs of repentance. Instead of protecting God’s reputation, it was all about damage control and so a measly three month “don’t teach” ban was enforced. Yeah, that will really get someone to see how they disappointed God.💔😒And it will really show them how they lied and broke their wife.

And so here we are again. Because he was unrepentant then, he’s now done it for three years and counting. My legal advisor asked me if I’m leaving. Of course I want to. Who wants to stay with an unrepentant narcissist? But, I’ve been a godly wife and done nothing that brought money IN to my own bank. I get a R3500 personal allowance and then R5000 to spend on the children and me- our clothing, therapy resources, toys, books etc. But hey, he has a statement at least from June for her monthly rent of R19 500 and an invoice for September that he paid for the rent. And bought furniture costing thousands.

Worst of all? He helped plan her divorce requirements.

This is just a portion. The red is his contribution after she asked him what he thinks.

Guys, I am heartbroken. I feel as if I gave birth to a monster. He claims he reconnected with her in 2022. This attachment was in 2023. Did he precipitate her breaking up her family? Why was he helping her make her family decisions? How dare he involve himself in the break up of another family? How evil do you have to be to so calmly decide how another family should SPLIT itself? Besides the money meant for my children and me legally ( we are married in community of property and all large amounts of money are meant to be agreed by both spouses before they are given away!) and morally, I cannot get over that a whole church elder agreed to help plan how a family would break up. This fills me with great shame. You have to be soulless to do this.

And so my readers, this is how my church let me and my God down. They let a man who didn’t care about God preach about Him after a mere three month holiday. They acted like he’s done nothing when he had done everything the devil loves.

So yes, the legal advisor asked me what my plans are. I told her that my fears are for our future as his ex wife and children. I am disabled so cannot suddenly get a job. And this disease is progressive. So even if I wanted to, I’m only going to get worse and this is already bad as it is. I also read that the ex only gets the pension interest amount up to the date they divorce. Guys, SA pension is NOTHING. Our elderly folk who don’t have help are starving. How would I with my gluten free needs survive on a pension? Oh, I mention that because when the spouse retires, the court can even decide for the spouse not to pay spousal maintenance anymore! No way my forever dependent children and I would survive.

So she asked for salary, liabilities, how much he’s been giving away to anyone, medical bills…

And the man has refused.

Says a lot.

I always did say I was being financially abused. But now, the stealing from our family is a BIG problem and issue. How much has gone to floozies? There’s only that reason why he’d not want to send the documents. Instead telling me I must analyse my costs. They didn’t ask for that! The email response was so bad that when I showed it to my advisor, she immediately said she’s in disbelief at how narcissistic he is.

There we go. My friend and I said it. Nobody else had. But just one email exchange showed his true dark character.

My church decided to close their eyes. And it’s not just my local church, it’s every church I know of. We have rules but we don’t follow them. And thereby, we enable the men to continue and the women to keep hurting.

But I know God will vindicate me. He already has shown me evidence of His presence by answering the second most painful prayer (besides, “Is my loving husband going to die?) a wife would ever pray. How many pray for a month for EVIDENCE that they are living with a hypocrite who can’t keep his vows when they’ve kept theirs through hell and high water? 🥹💔

I have always wanted to prove that we can do certain things. We can adopt. I love my adoptees as much as I love my bio children. And another thing I’ve wanted to prove? The voices were wrong.

I’ve had in laws, elderly cousins, parents telling me the children will be messed up. They won’t be able to function in the real world (because our world is fake?) One said I was destroying their future.

First of all, I wanted to inculcate in the children good principles and values that they would hopefully spread to others. I gave them all the knowledge of GOOD that I could, so they could discern the evil. And judging by this funny text between my daughter and I, I definitely did achieve that!

While they still hold their antiquated illogical views, we keep pressing on and laughing at the knowledge of evil she never got.

I have another happy moment. I truly believe that folinc acid is helping our girl open up. Yes, she’s still getting violent and hurting me. I had surgery on my calf muscle to remove a lipoma that was on it and a nerve and I’m going through torture. But she doesn’t care. Not that her twin and brothers do either. So she pulls me when I’m meant to keep my leg elevated. I went to get stitches removed but when one was removed by the nurse, my incision gaped open. Oops, too early for my body! So we have given it a few days.

But man! Though she now requires more supervision as she’s reduced how long her quiet time and tablet time are, she’s saying more too. She repeats a lot of what she hears. But also does more than before.

She doesn’t usually play with anyone. And if I got close, she would move away unless of course she was pulling me to get something for her. But today she pulled me to the garage, and played around and ran around while I watched, and then she made me sit on a soft ride on therapy toy, and she sat in front of me. Close proximity is NOT normal at all! I pretended we were riding on a train, and then she leaned backwards onto me. She rested on me. She hadn’t done that since before autism showed itself when she was around 18 months old! She’s six now! My heart was so full!

Later, she came to my bedroom with big brother faithfully following her. She jumped on my mini trampoline and I asked her if she wanted Bk to hold her hands and jump. Usually I hold her hands and do up and down movements matching her as if I am jumping too. She immediately looked at him and with her eyes and raised eyebrow, she fully communicated without needing to pull him, “Yes,” she did want big brother holding her hands while she jumped! I’m proud of her for finding a different way to communicate.

Our steps forward might never be major. We might never again have her call me Mommy. And so I faithfully celebrate the little moments. Like her looking at him for a the first time ever when I asked. “Where is Bk?”

This post was clearly a girl’s post. It’s truthfully because our ten year old boy seems to be regressing intellectually. We all see him understanding a bit less, misunderstanding, not hearing what he could hear before, acting like he’s losing social skills.. so I don’t have anything trivial it amazing to share.

But I can share his “going to occupational therapy” outfit worn on Tuesday. Note the ankle brace. Even the way he sprained his ankle was illogical. Not a normal fall. A fall doing something not even a five year old would do. Running (not sure how!) off a moving elliptical and twisting it as he tried to land on a therapy mattress. I can’t picture it. All I could see was the swollen and painful aftermath that saw him at the emergency department on crutches for a week and then the brace alone till Monday this coming week.

See? Nothing fun and trivial. It’s a bit worrying. Same with weird sticking out his tongue movements like he’s a down kiddie whose tongue is too big for his mouth, which it’s not. Hence it being weird. Anyway!

Let’s end there, shall we? My daughter certainly doesn’t feel deprived because she didn’t know who Ted Bundy was; homeschooling didn’t make her unable to be fearless and instead, she’s been group leader for many assignments, and she is aware that all of us are made in God’s image that nobody is inferior to her. And THAT, is a wonderful way to summarize the non academic part of her having been homeschooled.

She’s ok! I didn’t break her.😆

(Some might be repetitive) An acquaintance at the church nearby asked me who was going with me to my doctor’s appointment. Let’s back up. I’ve had HORRIFFIC pain from toes to calf and I was sure it was nerve pain. I had weird skin issues on the other foot and the closest photo that Google found when I did a photo search was a type of eczema. It starts with painful blisters. Everywhere on the foot. Under, on the side, between the toes. So when you walk, you step on them and want to cry. When you wear shoes or socks which naturally bring your toes closer, you want to cry. Then they become discoloured patches. So, I’ve had even less sleep than the usual no sleep due to AS thing.

I’ll do a separate post on what THIS psoriasis looks like. From start to how it ends up when the blisters have gone flat. This is a preview.

I arrived at the doctor’s rooms and sat down to wait for him. The acquaintance- we haven’t hung out, don’t chat often, so I feel weird saying friend- asked me when my appointment would be, and who had accompanied me. Nobody had. I get so envious when I see couples at the rheumatologist’s rooms. It’s a serious disease that takes us there and support is wonderful. I’d love to have someone else with me when she tells me my back is not stretching as far as it had been. I want someone when there will be bad news. Or just further instructions.

I got home and funnily enough, our Vi also asked me if I’ve always gone to the doctor alone. She even felt like accompanying me! What his it with these ladies? Same day? Out of all the appointments Vi has seen me go for, she asked after THIS one? Funny coincidence.

I feel alone some days, and I’ve seen patients who feel even worse than I do, anxious, legs shaking, nervous chatting… I’ve been going to specialists since I was three years old so I’m used to all kinds of doctors but they aren’t. Im happy I could help the Gastro one who thankfully ended up not severely sick. That’s what I wish! To calm people and see them through their trauma and then move on to the next one. My friend is going to a specialist soon but I can’t be there though I want to be. She is me and I am her. Alone at the doctor’s.

But look at this!

The sound might be bad so you might not hear clearly. I had tried to wear shoes in the morning and leggings. My nerve damaged foot feels like it’s on fire all day and night. Add shoes and it’s worse. The leggings too and the pressure they exert don’t help. I was in the kitchen and my irrepressible six year old was with me when I stumbled which made me step hard with the nerve foot. I couldn’t control my reaction to pain, so I cried out, and she lovingly asks about me and offers to pray for me right there and then as she knew God would heal me immediately. How can I feel alone when my six year old stops and prays for me?

We have another first for our non speaker.

This is a big deal for us. Our not very talkative twin got out of her room and went shuffling along to the freezer, nobody heard her! She knew what she wanted! She took out some diary free ice cream and took it to big bro to open. Never done that before.

I may be going alone, but I know there is a girl friend somewhere, waiting to hear what the doctor will say. And I’m thankful for that emotional support.

We are starting the anti psychotic medicine commonly known as Abilify! On my ten year old. Her anger and aggression and snapping are extreme. So we are hoping she will be able to find a calmer existence. When I gave it to her this morning she asked what it was and I explained what it’s for. She asked if it would help her self harming. I asked when the most recent time was. She said it was when I’d sent her to time out for telling her sibling to lie to me to get something I’d already told her they wouldn’t be getting, (Their Samsung Tablets) that she then bit her knee when I closed my door because she felt abandoned. Sometimes I bring her into my room but then her siblings come and give her lots of input and fun that there’s no time for her think about never lying again. (An impossibility for her🫣) Other times, I’m very busy or recording videos. That’s exactly what we want to reduce- a destructive anger that builds up even when she’s wrong.

Takes a long time to start having an effect, about 6 weeks to two months! I’ll let you know if it works! We only took the first half tablet this Sabbath morning. So far, the side effect she has had is heat regulation problems, which is temporary. After a week, she will have an entire tablet. I hope it treats her well and HELPS us all.

Here are some random pictures. 😅

I wasn’t with them. I don’t know where our ice cream thief went. She was with them.

I hope I’m able to find a way to bring peace to my daughter.

Isn’t it crazy that a mother would be happy that she has MANY children who need therapy? Obviously, financially it’s BAD. The fuel spent, the costs our medical aid does NOT repay, it’s not great. And it’s not exactly wonderful that they need it all. BUT, you see, we had THIS little girl who needed more siblings to need therapy. Siblings who came from my own womb.

I am pretty sure some might recall – not sure if I had THIS blog at the time though- that my girl felt that we shouldn’t have adopted, because it was only her adopted brother and her who needed therapy. She was with me when I had to pay for vision therapy and the receptionist and I laughed over how we’d pay anything for our children. She missed the laughter and just saw money… Money spent only on the adoptees. Big sister and big sister didn’t need therapy. “You shouldn’t have adopted us. Then you’d have more money.”

I feel like I do recall sharing on here that I tried to show her how broken I myself am and how I too am in need of extra care and money and I wasn’t adopted. It just was it was. I too had many tests. Yes, they were physical in nature, but I cost a lot too. So she must never think being adopted is the problem. Life is!😅

But it helps even more knowing that both her siblings from my womb also need therapy. This was taken during OT yesterday. She doesn’t feel so weird. And she gets to see lots of other children coming and going as the practice has three therapists. So she knows she’s not as much of an outlier as she thinks she is. And that is GOOD!

If someone could come up with way to get my angel to not assault me and not want to drink toilet water because it’s blue, I’d be happy to send her there too!

As you can see, my wound and stitches are going in the wrong direction. And look at the swelling too.

This was today’s photo here below

You might be able to tell that I’m swollen all the way down to my ankle. And the pain is increasing. So… I’ll give it today. If no reduction, I’ll go to the wound nurses tomorrow and find out if this is something we can remedy. Compare it to Saturday…

So now you can see why my angel told me not to teach today. At my wound appointment, I’d been warned that the calf is not a good place, we stand up and all the blood goes down. Not good as that causes pressure. So I was to elevate my feet above my heart as much as possible. But add all the walking I do as I parent my children and teacher, caregiver of special needs children, and it’s not going to get enough rest.

My girl was not impressed with how it looks today so she made me stay on the bed. I taught her from afar. Tomorrow I’ll get her to bring her desk closer because wow, she left out many pages! She’d do one page and then miss out two then continue!

With her sister, some of her work allowed us to both be on the bed as she read to me and we discussed ordinal positions as well.

Yep, her sister cut her hair. Did I mention that? Sigh, I’m definitely leaning towards a conduct disorder. Then again, an impulse disorder also makes sense. I wish we could get this neuropsychological assessment done YESTERDAY. And once we diagnose it, is there a way to reduce the number of times she goes bonkers?

I am happy. So so happy. This is a total side bar. I realized that I am seen and heard. The very things I share that someone is so weak and pathetic as to pass on to my abuser, are the things that I’ve never said for over two decades. I spent decades praying for growth and maturity but there has been none to find. The word selflessness is nonexistent. Sacrifice? A swear word? And so, I have found others. A very busy mom who I tried to entice to visit me but man, I don’t know what kind of day our last born would be having so I’m glad it hasn’t happened, and my best friend. I included her in the email I wrote to my children’s father and the woman he’s being a sugar daddy for. They know she knows. And it makes me happy to know that the world will not shake if I finally reveal my reality. Did you know that I’ve never shared till now, that an in law stole our rent deposit AND that he didn’t ever confront her, ask her why she stole, ask her to return our money we’d both worked hard for? I would share about my own relatives who used me only for money, but I was quiet about a thief who also stole. For what? No more! Truth is truth even if there are talebearers going around telling my abuser the truths I share.

I am thankful that my best friend allowed me to traumatize her. Twice over thh he years, if not thrice, she begged me not to tell her the abuse I’ve been undergoing. But I had nobody. So I did. And she has allowed me to.🥹That means a LOT, it’s more helpful than hurting my body sitting on a psychologist’s chair while wondering how the children age at home.

I am thankful for sisterhood. For strength. We aren’t the old generation that tells people that no matter how bad things are, just endure the pain and don’t expect accountability, We aren’t the people who accept flirtation and infidelity from our spouses as a matter of course. If we can be faithful, then clearly they too can be. If we can surround ourselves with sisterhood, they can find fellow men to give their time and attention to. We aren’t the type to say, “Oh well, all men cheat. It’s part of life.”

Nope, it’s a life we didn’t sign up for when we said our vows. We signed up for tenderness. For high regard. For team work and partnership. For fidelity and integrity. For a man who will leave his mommy and cleave to us just like we cleave to him. For being cared for in sickness. And so, when things go wrong, and it turns out the man was future faking (presenting a future he wasn’t ever going to ACTUALLY live up to) we send each other videos and links to things that are relevant to the season we are in. And that makes me happy. Even if the video itself makes me cry.😊

PS. I know there are female horrible wives. But I’m not a man who has guy friends to discuss them with. So, I’ll stick to the men who are whack and rejoice for those whose husbands serve their family unit as they should.

I’ve taken myself of YT for my homeschool life and special needs aspects so now you’ll be hearing a lot more of my life as a mother and special needs caregiver and distance mom of my first daughter. Brace yourselves!

A week or so ago, my girl sent me a screenshot of their planned out ‘work meeting’ for a Business English assignment. Now let me tell you the backstory because this is the positive side of my heart that I hope she inherited from me. (Always thinking of the outlier. And my closest friend in my first junior school was also a Muslim girl!) They had to work as a group and set up a work type meeting using Business English aka business jargon. They all agreed on a certain time. I think it was 7pm. But then secretly, the Muslim girl texted my girl to tell her she’d been shy to say anything, but 7pm was her prayer time. She assumed they’d not care about that. My girl assured her that she’d speak to the rest of the group and they – contrary to what she feared- WOULD adjust the time to suit her. And they did.

So I already had a bit of a proud mom feeling about that assignment. My girl is a safe person for the Muslim girl. Then late one night, my girl sent me the screenshot of their ‘meeting,’ saying how they’d gone way over time and it was due the next day and that they were nervous they’d not be able to pare it down enough.

She video called me today. I thought there was a big problem because WE usually call HER. And she hadn’t even asked if I was available. I answered with great trepidation. Only for her to show me this.

My girl was SOOOOO proud of herself and her group! She couldn’t hold it in! 🥰🥰🥰😍😍She’s had some terrible group project members so this one was already off to a good start as they are all friends, though they tend to bunk lectures and she attends every single one. Their efforts were rewarded!

Then I thought of earlier in the month, how disappointed she’d been about the mark she/they received for a different assignment for a subject she has struggled with terribly. She was truly distressed about her 63%. The way she introduced it, I thought she’d gotten 45%! The level of disappointment didn’t match the mark at all.

So I started creating a post around that. I wondered if her dissatisfaction with a good pass for a very difficult subject was from our homeschool years. Back then, in the earlier years, before we moved onto the next grade level, I needed them to get 70% minimum. That was MY pass mark. Forget the governments 30’s and 40’s. Then as they got older, I made it 60%. I truly wanted to know they have a proper grasp of the work before moving forward. I wondered if it was her own hang ups causing her to be so unhappy about a respectable 63%, or if I caused it. I tried my best to show her that that was a huge improvement and all we need is for her to move into second year. A specific mark for one subject that she will never study again isn’t the end of the world when it’s a very clear PASS! As I thought about the wording for the post, she sent this text message.

Exactly this! Even in our high school years, Physics. a subject that she’d truly struggled with was not good enough at 78%! It was funny that as I was analysing her reaction to her marks, she also was!

It’s just the beginning of her degree. Things will get harder. I really hope she keeps getting the marks she’s working for. If not, I’ll be her safe space.

And I had better enjoy the communication. If she gets a boyfriend, she might forget me and share her highs with him. So I will saviour every text, audio note and video call. ❤️

Mothers used to ask if it didn’t lots of disciple to be a home educator, didn’t it make me lazy and not want to teach on some days? Nope. Never. The only time I’ve not been disciplined enough to do what I planned was when I’m extremely unwell thanks to AS or any other sickness. That’s the only time I’ve had a “I don’t feel like it” moment. Or after surgery. Then I’m kinda.. NOT in the mood.

I love it. I love teaching. Just wish my body did too. As I celebrate my girl who is no longer being taught by me, I hope the rest will reach their personal potentials. Then I’ll feel like I finished my race.

Before I finish, what about my current pupils? I will add that my now six year Twin A came in telling me her left hand vs right hand. Correctly. Sadly, it actually felt miraculous because by age ten, her other two siblings still couldn’t tell you-thanks a lot, dyscalculia.😏

I asked if she thought she’d be able to remember it correctly forever. She said, “Of course!

I’ll remember it even

When

I’m

Seven tests old!“

Yep, that year between now and then is indeed the equivalent of “forever.”😎

One last thing. I am tired and in pain! Sadly, not much worse than when on Rinvoq so I don’t know if it’s helping much at all. Which as you might recall, was the question the rheumatoid and I had given my ‘never been this high’ numbers from my blood test results. Add surgery and hair tightening day which means my butt and my shoulders and arms and ribs become more sore, and you’ve got a miserable mommy standing at the laminator preparing for dysgraphia class for tomorrow.

In comes my children’s father, asking where our second son’s anti psychotic pills are. I wanted to cry. Is this the weaponised incompetence people talk about? There’s only one place their medication stays while waiting for me to put it in their weekly pill boxes. Why me?? Why not just look where they have always been?

I was really grumpy now, guys. It’s past 7pm, my body is so tired from AS and lack of sleep that I’m walking in a daze. I go collect the tablets and my boy appears next to me. He hugs me and tells me,

“It’s so nice when you are here.”

.

.

.

What more can one say? We do this for them. We suffer for THEIR sake. And they reward us with love (and pouting but we don’t go there.) when we aren’t expecting it.

I hope I will still be here “forever” so I can make him feel happy . A forever longer than N’s year, 😊

For those whose working week hasn’t begun yet, have a good one. May things go as smoothly as they can.

The minors are major because the majors might never happen. Today’s minor is her NOSE. Unlike her siblings who can blow their own nose, unlike her twin who can also sniff too, our girl is just stuck with mucus flowing down her nose. She doesn’t articulate or show that it needed to be wiped so I don’t always catch it.

During the week, I bought a Baby Vac from Dis Chem to try remove mucus from her nose, but she totally refused for big brother to do it. So I was just trying my luck when I did it this morning. It’s meant to be attached to a vacuum cleaner – don’t know how exactly-and then turned on to suck the gunk out the child’s nose. Autistics and loud noises are not friends unless it’s their own mouths making the noise, so that is not an option. Other nasal aspirators tell the caregiver to suck so..I did. Sprayed the saline solution, inserted the nozzle into her nostril and she allowed me to suck mucus from her one unblocked nostril!!! I was so excited that she had ALLOWED me! Not even all typical children want things up their noses. Not only was she ok with the and the feeling of the sucking, she even tried to put it back into her nose herself!

I’m so proud of her for letting me! For being able to handle it. Something new, something weird… It’s the little things that keep me going!

Their father hasn’t been here since Wednesday and he’s gone off to church, so I will act as my own nurse, and keep nursing the children who are still all sick though not too bad. The wound check and dressing change was interesting. The nurse has never seen a lipoma in the area mine was in. But she also made me realise that recovery won’t be that quick. The added reason is also that we cut and pulled and twisted out right by my bone and bone does not like being bothered. I am meant to rinse with salt water- forgot to do that today- and then put antibiotic ointment on and cover it back up. The pain, too, should be significant so the suggested strong anti inflammatories. She wasn’t happy I wasn’t given any by the actual surgeon. And keep my foot elevated above my heart.

Anyone who has children knows that children do not follow protocol. Mom and bed rest do not exist in their vocabulary. And so, I’ll half nurse myself, and half nurse them. Kinda like my AS life ANYWAY.

I do appreciate the concern and care from afar. Vi checked on my early in the morning. That means a LOT guys. When you need a caregiver but you have to be others’ caregiver, it is extremely lonely. In the space of my topping this, I’ve had four interruptions that required me to stand because Twin B wants stuff that I’m hiding in my room because other sibling eats it all.

I will be thankful for the little Sabbath blessings. The child who allowed me to give her a bit of relief..and the helper who texted to find out how I am today. Besides the pain, I’m sleepy. I sleep even less now due to the nerve pain in the leg and foot, I am sleepy! Falling asleep as I edit the children’s nature lesson while knowing even when I’m done, I won’t be able to take a nap. Ankylosing spondylitis is cruel. Weird benign tumours that keep appearing, are weird. I need some spoiling, some “You should rest. Just send a message if there’s anything you want us to do.” VI’s instructions to me during the week.❤️

I truly appreciate every silver lining blessing 🙏🏾 What has brightened YOUR (Sabbath) day?