They said I should write a book

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

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

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

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

I have more energy.

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

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

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

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

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

I promise not to kill myself ironing ever again.😅

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

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

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

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

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

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

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

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

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

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

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

Ok then!

I can see the resemblance… 😅

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

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

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

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

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

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

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

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

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

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

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

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

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

But none of this current life is fair either.

It will be made right.

Have a blessed Sabbath and peaceful and healthy weekend!

I kept quiet. I had no chance to say anything anyway because he was preaching on the pulpit. Nobody ever says anything. So I kept quiet. He would repeat verbatim what a famous preacher said in a video we watched, as if it was his own witty saying or profound understanding. Others would quote the preacher, “I listened to a sermon by ABC and he said..” but he did not. Every saying he ascribed to himself. And I kept quiet.

He would stand up front and say he had read a certain text and I’d be thinking, “Man, I showed that to you! Why can’t you ever admit that your wife taught you something you didn’t know?”

And this began long ago. Because I found him already an elder and preacher when I was 18, the only voice our students heard was his. And so when I wrote a scathing email about an improper Sabbath that celebrated us and not God, people actually thought HE had written it. Nobody knew I could also use texts to show what God thought of practical parts of life.

And thus began a pattern that lasted well over two decades. A pattern in which the preacher’s wife remains silent, quiet, but also hoping that the preacher would draw nearer to his God as he claimed to be.

I kept quiet when he’d bring girls from his workplace to our home. I was the prescher’s wife- maybe he thought his flirtatious manners would draw them to Christ? I don’t know. I didn’t keep quiet with HIM. But he turned it around and said I was not being hospitable like a good Christian should be.

I kept quiet when he’d teach young people to be circumspect around people of the opposite sex but he was doing the opposite. I kept quiet when a young man said his story of our relationship was like a love story, perfect. I couldn’t speak. I don’t like the neglect, abuse and cruelty that comes when I tell the truth. And it had been drummed into me that the only truth you can tell is the one that makes your spouse look good. So I kept quiet.

But.. no more. I started telling anyone who would come to our home about the abuse and neglect. The cruelty and sarcastic put downs. And so, yesterday, I added a new person to she small group that I will not longer lie to by omission.

It was a double edged sword. See, the last time the husband came to Cape Town was right after the first time I’d found out my husband had been unfaithful. I was in no fit state to see anyone I would HAVE TO BE FAKE WITH. So I refused to meet him.

And here we are again, I find out in October about his floozy, and the Kenyan and his family want to see us when they come for a week’s holiday. Now what? What crazy timing! This time I vowed to my best friend that I would tell the truth. It is harmful to play happy families when you’ve been treated so cruelly that even your children are in shock. No way I’d lie to anyone even by omission. I told my friend I hoped an opportunity would come up to expose the truth.

The worst part? The husband was a faithful boyfriend to her when they were dating and he was studying with us at UCT. Everyone knew his heart belonged to Gladys back home in Kenya. Fast forward a few years and we are living in Kenya and they are now a married couple with a little boy. And still, his heart was for her. He praised her, boasted about her, was a hands on dad. How would my heart handle seeing treatment that I deserve being given to another? Especially after everything I’d forgiven? You know how the Bible says if you’ve been forgiven a lot, your gratitude is also beyond measure? If that was the case – if he’d ever asked for forgiveness- then the love would have been abundant. But it was not.

Thank God, the wife took it out of my hands as soon as they arrived. She didn’t even sit down. She wanted to cook to help me but there was nothing to cook! She was desperate to do something practical to help. I don’t know why I didn’t think of the ironing. That has been disheartening! It hurts so much just to iron one sheet. I ironed a skirt and my neck and shoulder were screaming. I didn’t realise how bad it was because I had not ironed in a few months. Anyway!

She dragged me to another part of the house and said she wanted to hear from me. She said that when her husband didn’t see me when he came over in 2016, he was devastated. He phoned her and told her my husband had met him at his hotel and didn’t bring me and don’t invite him to our home.

Oh wow you guys. I think I’ve been made to feel so unwanted that I didn’t expect him to be that sad that he’s not seen me. I thought my husband would be enough for him.

And so, I had my opening that I’d been telling my friend I was hoping for. I told her why I couldn’t meet with her husband when mine was the opposite of what he pretended to be. No way I’d have been able to be normal. I had a meeting with him and the elders when this first known affair happened in 2016 and I wept from my broken heart. What did my husband tell me? “You were acting like you don’t love me. Why didn’t you hold my hand? And why didn’t you call me Honey like you usually do?”

I have morals and standards and I married him for the morals he pretended to have. I fell in love with the words the preacher spoke. When those words proved to be empty, what was there to love? Especially not when this meeting happened after I’d caught him and he’d claimed he’d dump her but then went back to her a month later. He had killed me and expected me to play happy families. So I told her that I couldn’t do that when her husband was here that time. I told her that when I’d been told they are coming, I’d looked for them on Facebook to try get her number to tell her before they come.

But all’s well that ends well. She too had seen firsthand the devastation a spouse feels when they’ve given their all to someone who purposefully throws it away. A sister in law I had met a few times had found out too. She lost it. She left her home with all her clothes and stayed with them for three whole months. Absolutely devastated. She said she could imagine how broken I was from seeing how broken their sister in law (her husband’s brother’s wife) was.

She asked if the camera pointed right at us could pick up sound and I said yep!! She said, “Good. He needs to know I know!” And of course as I described all the different forms of abuse, she pegged quickly that he’s a narcissist.

It was liberating but sad. And that’s ok. I’d rather be liberated and sad than faking a happy life and being even more sad. They are the ones who brought me that bunch of yellow roses you see above.

In the same way I stopped going to listen to this preacher who meant none of what he preached, I will stop hiding. I’m not the one giving away money and time and affection. I have nothing to be ashamed of.

I will not keep quiet.

Feeling really sleepy so there might be way too many errors! Sorry!

The saying does not apply today.

See that light grazed area? That is today’s injury courtesy of my last born daughter. She was angry that her oldest sister played something on TV that she didn’t want. But it’s not like she tells us what she wants. So she started attacking her and then tried to throw the TV down and then I appeared to hold the TV steady and she then sprang for me and scratched my face. It still stings and it’s been ten hours since it happened. Her father hasn’t asked how our day was in months so I haven’t bothered telling him. So you who also haven’t asked how the day was, get to find out anyway. And after all, your reading this kinda means you want to know, right?

You also want to know how I calmed her down when she was attacking Vi and I for having dared to make her bath. She did the same “aim for their eyes” thing and was out to get us. I started singing the abc song (Do not ask me why!) and she sang along! Multiple times. Holding my hand as she got dressed. I was a prisoner but at least I wasn’t being attacked and she could be safely dressed in her pyjamas. This life is crazy! And scary. I fear what will happen when she is TALLER than me. Her biggest sister fears what happens the day she realises she can use objects as weapons and not just her hands. She also fears that she will scratch one of our corneas given how close she came to my eye.

Onto less worrying things. Her twin, gestured at her top and told me, “Mommy, sing these words! Just these words that are here.” So I sang the first line and stopped. She thanked me. 😁That was as random a paragraph as the randomness of her telling me to sing that one line. How does she think of these things?

Skills! Her twin is developing new skills! If we are not around – like at 5am or when she thinks we are taking too long to dish out- she takes a dishing out spoon, gets a bowl and dishes out for herself! Well done to her!

And look at this! Figured out she can manipulate it to make two letters! She’s been saying “em” when pouring my almond milk for herself and I told her siblings she’s saying “em for milk” but they kinda ignored me. Then she did THIS.

She has been pouring milk out at 5am, taking crackers… No need to wake us up to make food for her anymore. She gets it on her own – two edged sword! Like her fingernails.🫣

And on a serious note, my lungs are not good at all. I was laughing with the children earlier in the day and I couldn’t breathe afterwards. And every now and then, it feels like my lungs are burning. I hate what AS has done but I have hope that next check up, they won’t have become any worse.

And that was a very short glimpse of our life these days, but oh wait!!!

The best part of today’s home life was my ten year old! How could I forget? As you can tell, dear blog reader, affirmation and encouragement don’t exist for me. The two talking girls came to my room and Ms Spokeswoman- Twin A- said, “Please could we have the craft items you bought?”

Her sister was gobsmacked! “How does she know the word ‘items’?

Wow! She’s so clever!

Congratulations, Mommy, for teaching us even though you’re sick! You’re doing such a great job!”

“Her children arise and call her blessed.”

Let’s hope tomorrow has less violence and more random singing, self care and feeding, and crafting.

PS I took a real letter M and said, “Look! Another ‘em!” She mumbled something that might have been, “Don’t be stupid! There’s only one! And it’s the ‘double you!’” I guess I won’t be writing words like mom then!😁

Oh my word I went to church today for PROBABLY the first time in at least nine months? I can’t recall. But I went. And it reminded me how fragile my body is. I may be able to control the pain a bit better now, but I need the pain medicine. And the autoimmune aspect is permanent. I knew that. But I hate that it is real. And the fatigue is real.

I got there with great hope. I miss congregational singing, but my decades in Xhosa churches with the way we sing has spoilt my ears. Nothing sounds as majestic and emotive as amaXhosa. My ears are just too brainwashed. It’s like the white folk who look down on blaccents. 🤦🏾‍♀️So I settled for the message in the sermon. I sat right at the back so that I escape any viruses that might come to me from people singing and coughing but also had my mask as advised by my pulmonologist. And right next to me? A sneezing, unable to breathe, chesty toddler.

Sick. Right next to me. So I took the chair and went to sit behind everyone next to a window. Those of you who have had the privilege of worshipping with me (JUST KIDDING about it being a privilege!!) know I do not sit at the back. I hate it. So now I’m there alone and sitting at the super super back. Ok. Time to settle for the sermon anyway.

And my stupid “chronic, debilitating fatigue” reminded me of the many reasons I stopped going to church. I knew I am tired all the time and that I fall asleep even while teaching, but because I can’t rest as much as I should, I don’t spend enough time lying down to fall asleep unplanned. But at church, I’m sitting still. And the pain was not great. Hard plastic chairs are a no no. But even that discomfort couldn’t stop me from falling asleep multiple times. I’d even not taken my muscle relaxant because I truly thought I was sleeping because of its sleep side effect. Nope. It’s just my body fighting itself.

I hate Ankylosing spondylitis.

I’m back home and one thing I did get out of the visit was that I’m not alone. There’s a lady there who I know had hip problems and needs a hip replacement but can’t get one via government until she’s 55 years old. She’s 42! She can’t save up for it because she has children. We lamented something I had told a friend of mine recently, the more the children grow, the more expensive they become. And I STILL have diaper costs. We can’t save for anything. She too has multiple children. Five. The loneliness she feels as she can tell her husband doesn’t truly see how unwell she is is well known amongst us women.

My older friend said her husband told her she’s lucky to retire because now she can feel better because she can rest. Resting doesn’t really help us get BETTER, it just stops us feeling worse after we rest. The age old dilemma we mothers have is that if we truly do rest, the home will fall apart. Nobody will do much and it will be waiting on us. And with children who already want only us anyway, we just cannot lie down and stay in bed for some self care. We have to keep medicating, supplementing, refereeing… But because we do it without complaint, without crying, without reminding them that we are sacrificing ourselves, they then forget we are suffering.

So I got that sense of aloneness and forced busy-ness affirmed by someone else and it was validating.

Now before the church visit…

(How I was dressed)

I told the children that their father keeps refusing to take a walk with me. It’s been months of asking and being fobbed off so that’s why I ended up being vocal about it. I did once go alone but it’s just not the same now that I’m sicker. The pain stands out even more when I don’t have anything to take my mind off myself and listening to music makes me want to SING the music and though my children say I sing well, after once walking behind a squeaking, high pitched awful singer who was listening to her music, I decided to not even begin to embarrass myself by singing loudly.

He did take a walk. This morning’s walk was interesting! A Coloured older man mowing someone’s lawn stopped to tell me I look beautiful. No man (last year I asked Husband why he says nothing nice at all about me and he said at least he doesn’t say anything mean) has said that to me in ages. I should wear that outfit often. I’m not just mom. I am me too and my clothes make me look beautiful. And then he said my husband looks Pedi. Clearly the family is not racist because he has a grandson who is a Pedi and looks like my husband.

He didn’t stop there. He told us he’s a pastor and that he’s also a marriage officer. He then told us he could marry us! I told him we’ve BEEN married 22 years already so the offer is too late! He was shocked because we look very young, then told us how he’s 64 years old, been married for 44 years, and his wife “gave” him four children. He then told my husband to respect me because women are closer to God than men are. “Listen to her! God speaks to her!”

It was funny and cool.

No improvement. Still pain and now I carry the fears of the nurse (When you remove the tape, put Bactroban on), of those who love me-the friends who worry about infection, Amarissa who is scared I’ll end up with a huge infection like the one she had in her leg, and the fear I carry after my blood test results told me my silly immune system is currently at war with the very blood cells that fight .. infection. Turns out my neutrophils are too low.

Now THAT changes everything. I was just tired of having a dressing and tape and dressing for so long. When will my leg heal?? It was already slower than they’d ever seen.

Now I don’t even know how I’ll know if I’m fighting an infection. It’s already swollen, it’s already /still sore. I am tired. Just tired. Our girl who doesn’t speak has become harder for all of us to handle, and more violent in new ways. School is sometimes impossible, I don’t know how to fix her. I’m sure she wishes she too could be fixed so she is happier, calmer. But we don’t know how. My body is dying. It’s like the devil is piling on a whole lot of pain all at once to make me break. Or die so there’s no pure Christian influence left to raise my children.

The one positive about calf gate itself, is that I have others as worried as I am. My daughter, my sisters, we will worry together. 🤷🏽‍♀️

Man, the world tries to be so PC that it is so PC that even the people it’s trying to protect from harmful words can’t keep up. One word is normal. I’ve never liked that one. I preferred typical and then read about neurotypical for those without ASD etc. BUT I’ve seen autistics wishing they could be “normal” and I am not about to give them a tongue lashing for expressing their reality.

The special needs world and its vocab changes too often. And it’s being held captive by American voices. They decide what’s wrong or right, even when others who are part of the group call themselves what they like… It’s still wrong even if in your part of the world, your neurodiverse folk use the term. One new term I dj agree with is “people with additional needs.”

Because wow, as a mum who had two children without these extra needs, I am FEELING it. Not only do they have these additional needs, but somebody – ME- has to supply the lack! Aaaahhhj!

And it matches the spiel I gave Ammy about how I too am a special needs oerosn and was as a child too. I had additional needs above and beyond all the children in my class except for one girl with horrific eczema. Too many extra chest x rays, blood tests, endoscopy, appointments, surgeries and here we are today. I’m about to print my pathology form for my blood tests tomorrow.

Additional needs.

And I’m the parent and teacher this time.

ADHD. My six year old pupil hears better if she’s fidgeting. So so what that I knew she’d not throw the pieces of cardboard she tore from the box away? So what that I knew y myself would forget to tell her too? As long as she’s learning, she can tear any old ‘going to the bin’ object.

So what if I wanted to keep some of their worksheets for record keeping? She asked to keep it so she could look at the ‘getting dressed algorithm.” PDA. When you’re dealing with a person with PDA, you take the path of least resistance. So I took a photo of the worksheet to print and put amongst my records.

Dyscalculia. Maths is extremely hands on. For pupil and teacher. Usually I laminate the necessary sheets but this was just for the lesson. Cutting strips of paper and write certain numbers using digits, and other numbers using tally marks, then fold them in half for the child to work with. For one measly Maths lesson.

Dysgraphia. Printing printing printing so they can learn how to write just a bit better. Plus it’s good practice for their little sister anyway who is still doing letter formation. Printing. Laminating. Reading instructions. Filling plastic sleeves bags with sanitiser so that the sleeve goes on top of the letter and they trace the letter through the goo. They enjoy that tactile stimulation. And play dough. Trying to find the play dough they keep taking. Playdough needed for the letters you printed and laminated. And failing to find the play dough. If it doesn’t come back to me as soon as it’s been used, ir will only come back in crumbs of dough.

Additional work. For additional needs. I had never even heard all these terms till I started researching why they couldn’t write, draw. Count.

Planning appointments. Working with four different occupational therapists for the children’s..additional needs. Trying to get my son to do the vision therapy worn needed but then he’s watching our other angel with additional needs so another day passes with no therapy exercises.

Our non speaker had a horrid day today. She attacked me, tried to eat my hair, tried to bite my hair, tried to bite my hand, my arm. She was on a mission! Above, she’s moving her bigger sister of a stretchy sensory swing. But she herself didn’t swing on it. She also did the same when her twin wanted to. No good reason. She had a giant tantrum and just as she was calming down, someone went out the gate and boom, we were right at the start of another tantrum. This time, she wanted to walk right in the middle of the road and nowhere else. Hey, it’s better than last week when she wanted to roll in the middle of the road right? Actually it’s not, both are not safe. Both refusals resulted in screaming and crying that I’m sure the whole block could hear.

It’s a life of additional needs. What do the others eat? What don’t they eat? And her? Additional thinking. Additional dietary needs.

But also typical phomeschool needs. School and crafts.

Reading and spelling . And sometimes, spelling happens just before bedtime as Twin A gets into bed. Tomorrow’s work includes typing or using letter blocks or tiles to spell certain words. On a whim I decided to ask her tell me how they are spelled verbally.

And she nailed it.

Some parts are normal for all homeschool teachers of children of a certain age.

I can’t. I can’t even BAKE anymore. So I do not do fancy dishes with expensive ingredients that need you to stand for ages. This is a simple sample of South African vegan food. And does it look “boring?”

What I do find boring is my gluten-free, onion free diet. The only thing friend was the stir fry and the chopped vegan protein. Everything else was baked.

The middle two finished everything yesterday so I’m very sure they will today too. (If you don’t recall, I cook enough for two days to reduce the amount of time I spend killing myself.) Sabbath means I add something for dessert or for after lunch so it feels like the special day it is- as you already know!

The power of a pill

Oops. Knock at my door! After I dish out, I go lie down.

And there we go.❤️Cooking is my love gift.

Even our cleaning lady could taste the heart that went into it. The text was on the 7th of November. I don’t recall what I made but I know it was cooked around a mixed veg rice base.

Let’s go back to AS for a bit. I shared on my Yt channel how I don’t become obese. Yet another poor lady has begun Mountjaro because she has become so obese thanks to AS and immobility. Guys, I don’t ever realise how bad I am. I don’t have a partner who tells me T rest etc so it’s only when others say something that I think about it. When I went to go get my re-opened incision sorted, the nurse asked if I was limping because the wound is that painful. She was really worried. No, the wound is only saw if something touches it or if I lie on my side on it. It’s the stupid AS! And it’s when Vi asks me angrily why I’m not resting.😅For the incision and because AS fatigue has stripped me of who I am. I can’t SHOW joy when I’m fighting pain and chronic fatigue. I wake up and the thought of getting into the shower makes me want to cry. It is TIRING to get undressed, get bathing. I finish and just want to lie down and regain some kind of energy. But noooo, I actually have to get DRESSED! And then I REALLY want to lie down and recover. But noooo, I have children to medicate. Can you believe Amarissa is on four medicines in the morning?? Just that first dose is made of four different types of medication in the hopes it stops her harming herself, stops her lashing out, helps her focus and stops her heart beating too fast!

That’s crazy.

But that’s not the pill I was talking about. I’ve had an awful start to the day. Worse than anything I’ve felt in the last two weeks excluding the nerve pain from the lipoma.

I went to take my midday dose of capsules and realised why I felt like I was dying. I forgot my Tramahexal. One round pill came make the difference between, “ Ok, I can pretend I’m ok,” to, “Please stop coming IN AND OUT demanding so much from me! I need to finish your story and edit it so I can REST! Don’t you care that I’m dying right now??”

One tablet. And hopefully now the pain will dissipate even more to its background hum that builds till 4pm.

Here’s to everyone who is having a painless Sabbath.

Actually, I have nothing to say to them. Haha! I’m

Terribly sleepy and fatigued that my eyes are watering from yawning so much. No editing today.