Author: Grace by any other name

Amarissa is worrying. It’s like she’s regressing cognitively even though she is the wisest and most perceptive, most aware of all my children. Her oldest siblings have been quiet, only when I sat them down and asked if they really believe I’m a happy wife like my biggest girl had said, that they then erupted with all the issues they’ve noticed over the years. “Now that you mention it…” was the refrain when I’d ask things like, “How does your father talk to me?”

Amarissa is the opposite. She’s so aware of her father’s sins that she sadly even makes up sins that match what he already is guilty of. For example, he is not respectful of my team of helpers-cleaner and Jack of all trades. He doesn’t appreciate how the children bloom with our male driver/aide. He ignores them when they say they like him, or talk about him, or ask if they can call him. This Sunday he ordered me to tell the young man to stop leaving his exercise bike uncovered. I asked why he even thought it was the aide anyway…And of course, it wasn’t. It was our non speaker.

But Amarissa picks up on that and makes up stories that reflect that reality. Yesterday she lied and said Twin A showed their father a photo of herself and our aide, and the father didn’t comment. Except when I asked my girl, she hadn’t showed her father any photo at all.

Now you see why I double check everything she says. She and her brother are liars extraordinaire! But besides the lying, her intellect seems to be slower. Not stagnant, but slower. She takes long to understand simple sentences. You have to say them in an even simpler way. She is very immature. She will want to be on the tablet while her younger sister is perfectly fine watching traffic when in the car. She will constantly want excitement while her sister is content to play silently or read. She acts like a four year old with her “I want” all the time. And because she’s also got that sneaky thing going on that made us think of impulse disorder, she gets her sister to come do the actual asking, thinking I can’t tell, or won’t ask, whose idea it really was. I hate it. It’s a the point where I need her to be in a school as she disturbs our peace every single day, many times a day.

Today, she ran away. She finally got out. I caught her twice before, then Vi caught her yesterday and then today Vi noticed she’d left the room where she’d been sulking and found her four blocks away. When my girl saw she was behind her, she ran away but got tired. I’m glad she’s not fit. She had a destination in mind. A lady who likes them. Except she is a veteran member of the Neighbourhood Watch and knows where we live.😂 But still…There is something off with her. And it’s getting worse. Maybe it’s the stopping the other medicine that’s been causing too much weight gain, I don’t know.

On the other side of today’s coin, they had a lovely time at their first ever Homeschool Art Club session!!🥰🥰🥰They have an aunty who has been looking forward to it and she won’t be disappointed to read my feedback. They and a ball. I’d told her how when I’d looked at the social media, the homeschool club only seemed to have boys. And yep, they do indeed! The teacher said my two were like complete angels compared to some of the boys, and I can believe it! As I was paying, I could hear a boy who just wouldn’t stop talking! Teacher had to raise her voice for him to stop talking and listen.

The girls themselves had fun! The teacher commented to them during class that they help each other so nicely and get along so well, and one boy said that it’s very rare indeed. Instead, when he’s done with art “school”, he gets home and he and his sister start bickering almost immediately. That was so sweet. Homeschool children are just so precious even when super boisterous. The one was like my Twin A when her ADHD meds have worn off or when she hasn’t taken any yet. 😂

I’m just glad they can never be the most challenging unless the two boys don’t pitch up for a lesson.🤭

I explained to their brother who is NOT into art, that I’m sending them because their academic future is unclear. They need to see what physical skills or abilities they have that can be harnessed into a job of some sort one day. (And Twin A is going along for the ride as she’d be jealous if she didn’t join in.) My boy said the only Club he’d attend is one where they teach about different jobs.

So, that is that! I sent my children to their first out of home ‘lesson’ ever and it was awesome. Only five boys ie. Small class, a very passionate teacher, and a good impression. I’m sooo glad they’re so kind to each other and to others. When a boy pretended he was going to throw rolled up paper at Twin A, she told him laughing, “You’re so funny!” Awww.

Today, they began paper machè wolves! Twin A yelled enthusiastically, “That’s my favourite animal!” The teacher told her that her favourite is the fox. It was my big girl who said she was “nervoused” as we were going there. Yeah, I told you her communication is not typical! But once she got into the room, she was right at home and I didn’t have to stay!

The only unhappy one was their little sister who cried and wanted them back home asap. She even got into the car to go fetch them. But let’s shhh about that part. It was WONDERFUL.

Everywhere I turn, in my hope to be free of the adulterer, in an attempt to stem the flow of money he’s spending -like R2000 a NIGHT, on his Japanese holiday, I come to a dead end financially. Impossible costs. So now what?

I will thank God for two little things today. One, is perspective. I am unable to articulate how anxious and stressed I am as soon as it’s morning and how that lasts all day. From 4am, I know that any time, one or more of my children will come and begin the day. When do I then study!? I know that my intellectually disabled daughter will pull me when I’m meant to be teaching, I know she will want the impossible, I know the others will fight and argue and constantly come to me no matter how busy I keep them. And that knowing, the lack of rest…I can only relax after ten pm. THEN I know they are asleep. But I don’t know when they’ll wake up in the night and come.

But, my 11 year old enjoys the very one who is most challenging. From HER perspective, she is blessed to have my most stressful, physically demanding, most heartbreaking daughter as her sister.

I mean, she does make me laugh. Like when she ignores everything I’ve dished out but then eats the very same thing from the pot or big bowl it was served from; a serving spoon, like here where for the first and last time for now, she was actually eating soup! She didn’t have any again, but those three bites were worth something.

But I worry and fret. The people who make the sleep sacks have shut down and nobody else that I can find so far, makes to order for big children like her. She will not sleep without a sleep sack. And because she pees through, every morning is wash day for her pyjamas and sleep sack.

My daughter doesn’t worry about that. She just has a cute sister she loves. Simple.

Second little thing is Uber. We finished our first part of medical aid savings in February already. R54 000 gone! So we’ve been paying the monthly medical aid premiums but also paying cash for all medicine, not merely the OTC ones the children need. This is the stuff that makes me think I’ll never be able to live separately even if they discover he’s hiding even more than the monies given to the ho and spent on his holidays.

So, when my son forwarded me an email I had also received from the university , I was impressed. They have partnered with Uber to give the students at their university 4% discount on Uber fares and free UberEats delivery. Not that he needs the latter as he’s home anyway. But still, going to and from campus is now a bit cheaper when he needs Uber. Which is something a friend of mine has been stressing about with me, given there’s no public transport from the suburb the campus is in. And that is my second little thing that I will be thankful for.

ETA – And a funny one that happened after I posted. The one fruit my non speaker has often, is banana. She will even eat three in one sitting with the fourth being taken away before she can eat it.🤯I wanted to order Celebration doughnuts and snacks (To celebrate our talkative twin aged six finishing Kindergarten in six months and now entering USA Grade 1, and a belated one for our 11 years partially entering grade 2) and decided to check if we still had bananas. We only had these few that I took out the box. I went to the Pick n Pay app to order, and we had free bananas already in the cart! Now that is a big little thing worth noting!

Every cent counts, any good thing that makes my children happy is good.

A post in a Christians with Chronic Illness and Pain group really resonated with me. It’s something I shared on here already, I believe. The person asked if she’s over sensitive or what? She has less time for nonsense now that she is living with incurable suffering. She can’t tolerate trivial conversations that go nowhere, and has no tolerance for people who don’t get it.

I wasn’t the only one who agreed with her. I recently cut someone out my inner circle. They kept reaching out to complain about her very loving husband and two healthy children who she has said herself, are victims of her very harsh temper. She knows she shouldn’t be as cruel and verbally abusive, but she is. And I am tired of the, “My life sucks. I have to parent two older, able to communicate, neurotypical, healthy children who can play together without my fearing they will destroy something or harm them and have to live with a loving husband who cooks when I order him to. How horrible is that??” Seriously, if you read her texts over the years. you’d want to cut your own neck instead of cutting her off.

But my children need me. So I told her that I hope she finds a community that understands her but I am not it. Oh my word, people truly think you owe them access to yourself the way THEY want to access you! I come from a generation where not everybody even had a landline! Let alone a cellphone! I would take the phone off the hook if I didn’t want a phone call at a certain time and that was that. Nobody demanded I never NOT answer the phone. I made it clear that she can send me an sms, she can email, she can phone me. But nope, she wanted to be in my WhatsApp world.

Nope. My WhatsApp world is for people who aren’t draining. I don’t have the bandwidth for nonsense anymore. If you are using me to vent, stop. Go vent somewhere else. I need proper friendship and true community, where we all care about each other.

As I sit here in pain even in my sternum, I think back to two people who were in my actual presence -not counting the sweet ones who have sent money for meds or surgeries, incontinence alarms for the children, Hope and love -who are what I have time for. One person is the one in the photo above. We didn’t have a diagnosis but she knew I was suffering. I have spoken about her too. How she raced down the mountain so she could stop me over using my body. I don’t know if the depth of “I matter??” I felt that day. It’s not like I had told her my body was aching. We didn’t talk about me. But it was on her mind. That is someone safe. Someone who sees me even when I’m not actively trying to open her eyes to my reality.

Another one, also happened on a Sabbath. After a long day at a church the adulterer was preaching at, I went to the car, silently hating the long drive home as it meant I still had a long wait before I could take the pressure off my swollen bones. As I chatted to an old friend, she asked, “But how are you? I worried about you when we were kneeling to pray. I didn’t like knowing you also knelt down given you live with so much pain.”

She opened the dam. I just burst into tears. Kneeling HAD been hell. It’s always hell. “But why would anyone bother thinking about ME?? I matter?? I hadn’t even said anything about myself all day! It was about her and church…”

That’s what my WhatsApp is for. For people who hear me. Not for those who want to educate me on things I know more about because I live them, not for people who forget how privileged they are to have healthy children. It’s for people like a young lady who didn’t realise till this week that the twins are autistic.

It’s for people who express shock and sadness because they fully comprehend what the impact is of what I’ve told them. My inner circle is for those who admit that parenting a neurotypical child is hard and they appreciate having a break when the child goes to her mother (child’s grandparents)so how does a homeschooling mother who is constantly with her multiple special needs parent cope? It’s in her wishing she lived nearby to do anything to take the weight off. It’s THAT. It’s living her reality which of course, isn’t trouble free, while also seeing mine properly. It allowed me to tell her honestly that I felt so jealous when she told me her daughter had gone to spend the holidays with her mother. The privilege of support, rest, is appreciated by those I invite into my world. And that’s seemingly typical for many of us who are sick.

We want to be seen just as well as we see others.

I remember these two ladies who saw me because it’s so rare for an invisible illness to be seen, and for people to acknowledge what is not spoken by the sick one. I’ll never forget it.

I survived reflux and baby colic by telling myself, “Soon they won’t be babies. They’ll take care of themselves. They won’t need me. I’ll be able to get chunks of time to myself.” I’d been spoilt after all. As I keep reminding you, by age six and seven, my oldest two were asking to watch sermons (aimed at adults!)! And they did watch. Sometimes watching two, and the sermons were over an hour long each. So I would cook, clean, not even plan any lessons because they just moved forward each day and they didn’t need extra help, read my Bible, minister to depressed people without interruption. If they weren’t watching, they were playing peacefully together.

I had breathing space and I appreciated it a lot. I was very thankful that I’d come out of the sleepless and rest-fog of their baby and toddler years.

You can’t rest or relax with ADHD. Even if they are playing happily alone, they are probably being destructive or dangerous. They need someone watching them all the time. We are in a terrible heatwave and there’s a fan in the hot garage where there’s also a play room. My 11 year old – it’s always HER- damaged that by putting ribbon in the fan while it was blowing. Now it’s all coiled up around the turning mechanism.

I had to buy a new vacuum cleaner because of her. Do you know how expensive they are!? All because she had let pool water into the garage and thought she could vacuum the water up. The vacuum was NOT one of those fancy wet/dry vacuums. She didn’t tell anyone. She never does. Either vi or I find it and I immediately know who the culprit was, and when I ask her why she did something, she asks, “How do you know it was me?”

Microwave I was using to heat my heat packs for my bone pain? Dead. She killed it. Wardrobe shelf in her room? Broken. She smashed it in anger.

School time? My six year old twins are both needy in different ways. Remember, I’m not meant to be teaching. I’m meant to be resting my body. But our talkative twin wants to do more school lessons than she needs. That is the down side of being gifted. They want more. They crave more! And then gifted and autistic means you just know that what you want, is what others also want for you.🫣

Her non talking twin will pull me when I’m teaching. And if I try refuse, crying ensues and the class is still disrupted whether I leave or stay. It’s bad. As I told a friend who asked how I am today, I wish they made daycare centres for intellectually challenged children where she could go and be watched and kept safe but not forced to sit in a chair and learn like all the other places want. But if other parents can’t find such a place, and I’ve never come across one except one that very quickly shut another mother down when another mother…Ok, let’s try that one again.

A mother in one of the groups, asked where her child could go. She was virtually describing my non speaker so I kept an eye on the answers. One place needs them to be potty trained. One place is one I had seen, a place a friend called Mercy had looked at and suggested, but their staff member very quickly stated they only take care of cerebral palsy children, not autistics who can move around and need one on one care.

I am willing to send her aide with her to a centre and I just suffer teaching the others till the government lets them in, which can take more than four years!! 🥹. I have no option. He has two daughters so maybe he’d be willing to change the diaper? Maybe? We had males changing diapers in a centre I worked at for disabled adults in the UK. But until I find a centre, I can’t even ask anyway.

Then I have my oldest two. My son was meant to put food in the fridge that I’d killed myself cooking yesterday. I chopped even when my hands got sore. Chopping baby tomatoes in half, chopping yellow and red pepper, and a block of firm tofu. Imagine being in pain chopping such small things! Mt feet were so sore at night. I woke up today with bones screaming. Even in my teens, chopping butternut was beyond me, but this..? It truly is a progressive disease. To see all that effort and food go to waste was awful.

We’ve had a heatwave. And even if we hadn’t, we always put the food in the fridge and I have always taught that. Alas, the food was NOT put in the fridge by the one on kitchen duty and it is off. All the tofu! And it had looked and tasted so good! It was a scramble with spinach, red and green tomatoes, yellow and red pepper and I’d mixed cumin, coriander, paprika to a bit of water and seasoned it with that, with a sprinkling of garlic powder -and obviously, salt. All gone to waste. It had been enough for two meals! And as I said, my six year old doesn’t care about mommy cooking, mommy must teach as soon as the six year old is ready. I fought for that cooking.😆(To go with sweet potato, cucumber salad, glazed carrots.)

But that’s not all! I then have my 19 year old in a different province who has a pest after her. And it’s the security guard working in the complex she lives in! In the morning no yesterday, she told me that he had told her to go talk to him in the security hut after classes. I told her I didn’t trust him and he sounded like he’s trying to hit on her. She said no way, he’s “normal.” He’s been there since her brother was there and now is not there anymore. Even worse. He’s watched long enough to know she’s alone. I told her men don’t care what age they are. She brushed me off.

Then afternoon came and she told me I had been right. He was definitely acting like a creep, despite his old age. She even told him her unit (house) number because he was so persistent! She recorded him. And later that same day (yesterday, when I started typing this) he dialed through to the unit on her intercom. He said he had tried to call using his personal phone but it didn’t go through so was using the one owned by the Complex. He asked her which mobile network she’s on. She then pretended she couldn’t hear him till he ended the call.

Very, very bad. I am terrified for her. But her dad is relaxed. He thinks that as long as he’s moved to another location the risk is gone. But he will always know which house she lives in and that she’s alone. I remember some pastor in that same province whose 21 year old daughter was found deceased in her gated complex flat. I am not happy about how blasè she and her father are. We need to be vigilant.

I have cut my post short. My sick girl is just screaming too much and my leg pain is extreme. I can’t think and I think that pretty much sums up this kind of special needs parenting. So many needy children day and night means very little sleep, and very little time to think. I cried yesterday over how I can’t even utter prayer without being interrupted. How do you fuel up when the fuel pump gets stopped before you’re done pouring fuel into your tank?

I can’t even live in hope anymore. It isn’t getting better and I’ve seen enough adult autistics with intellectual challenges to know it most likely will NOT get better.

And so, I leave you with a small positive.

We’re done – with Maths K! We had a ‘final exam’ for our Kindergarten Maths today. And despite all challenges…

Like a twin who found crisps meant for everyone for Sabbath and crunched loudly,

and despite being crawled on,

Our girl got 100%. She finished a whole year’s Maths syllabus in six months. Which she said was too long! And we are in her final English and Literature chapter. They’re still doing sight word revision but she already knows them and needs no revision. And she will learn more about antonyms-our current lesson-in upcoming years too. Mind you, I don’t recall ever learning antonyms when I was six. But then, I wasn’t American when I was six.😆But I do assume they will review them as she gets older.

Another positive is that my 11 year old thanked me for keeping the notes and letters they write or make for me. She told me that her father only kept one thing, something her little sister made. I keep them because each one encourages me. In school, we were told to make things for Mother’s Day or Valentine’s Day. As a homeschool teacher, I don’t even mention those days, so these are purely from the heart. To know that curse is done away with, means a lot. My mother was not only distant but cold that the only notes I wrote were to ask for necessities, as I recently shared. For them to be able to tell me they love me is amazing. I marvelled yesterday how as they walked out the door, Amarissa casually yelled, “Bye Mom, I love you!” I couldn’t believe I could have a child who feels love for me and wants me to know it. It’s always beenI wanted to have a Cosby Show type family. Where feelings weren’t taboo, and love was the ruling principle. I have achieved my part. And THAT, is encouraging.

It’s 16:59 on a Friday. I’ve just finished making up a new batch of scrambled tofu with baby tomatoes and spinach and peppers. I’ve made sure I put it in the fridge myself!

Shabbat shalom, no matter what that will look like. Even in the hurricane, may we feel seen and strengthened enough to try survive yet another day. Many others have fainted along the way and chosen to end the suffering while bearing less. So I mean that with all my heart. May we find the courage to choose life, for another day.

Next to God, the mother’s power for good is the strongest known on earth. AH 240.1

My mother hated me. Since the day I was born dark skinned unlike her, she hated me. I looked too much like my father too. And what made it worse? As I grew, people from church who had known my father when he was still married to the love of his life, his first wife with whom he had two sons, would always comment about how I looked like my dad’s firstborn son.

He was tall. Dark. Handsome. Did I mention dark? And my mother hated him before she even had me. She erased him and his brother from my father’s presence. When my father’s first wife died, my father had promised his young adult sons that their home (Chosen by apartheid officers) would always be their home even though he had now so swiftly found a new wife. A woman only two years older than his firstborn son! He promised the home he’d gotten with their mofher, would always be theirs.

But my mother made sure they were not only evicted, but didn’t even get a POT that belonged to their mother. The dining room table and chairs I sat on till the day my last parent was buried? It was bought by my father’s first wife. A clock we used all my childhood had been in use since my brothers’ childhood.

It was as if they weren’t to remember they had a mother. But not because she wanted to be a mother to them. Nor to me. The one who looked wrong. And so, I grew up never being seen. Nobody praised me for calmly reading my books, not making a mess. Nobody thanked me for ironing and cooking when I was 13. I was not seen. Nobody acknowledged that unlike my older siblings and my younger, I didn’t cause any stress because I never drank, didn’t make babies while drunk, didn’t make them sit up till the early morning waiting for me to return from the tavern.

Instead, you know the insults and physical abuse I endured. My good qualities were not seen. My good qualities are still not seen by the adult meant to be my partner in life. I ensure Vi and our aide know they she seen and appreciated. I praise them to others in my circle.

And my children? They arise and call me blessed, à la Proverbs 31. Ok, they don’t really. But they see me. Literally too! My ten year old son told me to stop tightening his sister’s locs as I was sweating “terribly” and it looked scary. We are in the middle of a heatwave here.

Look at the cool nature of our hair. This is the part I didn’t get round to tightening this evening as my body is fighting extreme pain.

Compare it to the bottom (the roots) that have been latched into submission.

I love the versatility of our hair, the way we can all have natural hair but maintain it differently.

She herself ensured I knew I was seen. Nothing new there, I know! But it was what she noticed that made me feel warm. She told me, “Mom, I’ve seen the books in your bookshelf. There are so many about understanding and helping children like us! You care about us! How come daddy doesn’t read about us? He only cares amour business, that’s all he reads. But you care about us. I’m proud of you.” 😅

Never did I consider what my books would symbolise to the children.

The love I have for them, is seen. The sacrifices I make, sometimes are seen, by them!

And the way they talk to me, the things they write and say, show me they know they are seen too. Yet another generational curse -broken.

I also know I am seen by my Creator Who is ever by my side or whose angel is ever by my side. Never forsaken despite how alone I may feel. Seen. And so are you in your sphere.

Woman should fill the position which God originally designed for her, as her husband’s equal. The world needs mothers who are mothers not merely in name, but in every sense of the word. We may safely say that the distinctive duties of woman are more sacred, more holy, than those of man. Let woman realize the sacredness of her work, and in the strength and fear of God take up her life mission. Let her educate her children for usefulness in this world, and for a home in the better world. CE 178.2

Autism comes with its own symptoms. Social communication weaknesses, inability to understand nuance, hand flapping or other stims that help them feel more at ease – regulated. Different situations or conditions make different autistics feel the fright or flight sensation way too frequently and for things that wouldn’t phases a non-autistic – the sound of a car, a garbage truck, the ocean, waves, wind, kettle boiling…

But autism also comes with its ‘friends that stick closer than a brother.’ Some autistics are average or above average in intelligence. Or gifted even, like my talking twin. But others have friends like “intellectual disability,” like my ten year old and his six year old sister. ADHD is another one that likes to attack itself to autistics. And one that I’m focusing on today, is gastrointestinal problems.

Autistics are four times more likely to have tummy issues than non-autistics. My son is lactose intolerant and has loose stools. My six year old has always had times of constipation which have responded to prune puree and laxative syrup. Until now.

Above in that photo, is her trying vainly to push out a LARGE amount of stool, as shown by the x-rays she had at hospital last week. Yep, my readers who don’t watch my channel don’t know the horror we went through last week. If you check my YouTube channel, you’ll get a glimpse. She has slow gastric emptying -which is sadly quite normal but very painful, causing nausea, irritability. The stomach empties the food out way too slowly, so it collects. And she is currently also dealing with a gastroenteritis attack. Talk about two bad reasons to be feign relentless abdominal pain.💔

That’s where we are now. Laxative syrup at high dose, prune juice, prune puree and a suppository are not flushing out the large amount of stool she has in her system. But the medical option- using colonoscopy prep meds is not likely to work on her. The doctor is very aware of how disgusting the mixture tastes (Don’t we who have had colonoscopies know it?) and so for an autistic, that’s already a huge no no. For those with taste sensitivities, it will feel like an assault. Add the fact that she doesn’t understand why we are giving her these things, and you have even less chance of the very large needed dose being swallowed. If she swallowed it all, it working would also cause her a lot of distress.

It is terrible when your child gets so much intervention but it doesn’t actually help, it just reduces the pressure a little bit.

She’s on heavy pain medication but it then adds sleepiness and wooziness so I didn’t give her any of the sedating type one before her OT session today. But without it, she screams, and even with it, when it wears off, she will scream for a long time and no amount of belly rubbing like suggested for IBS-C, makes a difference. Has never helped me either, to be frank. It leaves me and her big brother, so helpless. And she wonders around pulling us here and there screaming and not knowing that drinking more will help.

Autism has rude friends. Unfriendly friends. Friends that hurt both body and soul. I wish she could understand that she needs to drink even though she doesn’t want to. I wish she understood why certain foods are bad for her digestive system. I wish she could understand why she’s suffering and that we are trying to help her.

I wish she didn’t need to understand any of these things, anyway.

Blessed are those whose autistic loved ones have very, very few friends.

DO NOT READ IF YOU DON’T WANT TO BE REMINDED THAT INCURABLE AND CHRONIC MEAN THE DISEASES ARE ‘every single day.’ THIS POST IS MY REALITY. HE USED TO CALL IT “complaining” (Negative, ‘You’re so ungrateful’ connotation) when I’d mention how tired and stressed and in pain I am and that I need a rest. It’s not. IT’S MY STATING MY REALITY SO HE CAN SEE HOW MUCH I’M GIVING WHEN IN TRUTH, I SHOULD BE RECEIVING. FOR THE BLOG, IT’S SO THAT IF YOU HAVE SOMEONE WHO IS SICK OR HAS CHALKENGING CHILDREN, YOU GET INSPIRED TO HELP THEIR MENTAL HEALTH BY ASKING WHAT KIND OF DAY IT IS, OR TO ACTIVELY HELP BY BABYSITTING, GIVING A BACK MASSAGE etc etc.

I now believe the dry and ugly lip- according to my mother and Black Xhosa cashiers- was the first sign of Sjögren’s disease. You know the irony? I truly believed ‘he’ loved me because he acted like he hated it when my mother would criticize my lips in front of him. He’d tell her my lips were fine, to leave me alone, and he kissed me often. It’s funny. He told her to leave me alone two weeks before she died, while he was with his hoochie. I wish he’d told himself to leave someone else’s wife alone! But anyway…

This is how Sjögren’s can present. With dry lip or another part of your skin, for years before the other symptoms and oh my word, the other symptoms are heavy on me, readers. I am only moving because of guilt and necessity. I’m teaching because I don’t want to NOT teach but then get sicker or they get sick and then miss more school. So, I force myself. The back pain is horrendous. I even have muscle spasms! You can feel the muscles contracting and expanding and you just want to hold them still! As for the lips, we moisturise all day long, multiple times a day. Many use cracked heel balm many times a day, on their lips.

Yesterday, I drove my daughter when really, I wanted to lie down. The stomach pain is BAD. Lack of moisture in my intestines and stomach has caused a whole lot of constipation and a whole lot of pain. (That phrase is all wrong!) During one point while driving, I was curled up trying not to groan in pain.

I need to rest. Instead, my girl wakes earlier and earlier. I can’t read my Bible, can’t read anything relaxing to take my mind off the daily round of stress, and my nights are disturbed anyway. In the same way people get disability for AS, there are people in the group who have to take it because of Sjögren’s. What a cruel trick, to give me two autoimmune diseases that both cause pain and suffering.

Then, the twin thing…Both needing me at the same time. My other twin decided not to have lunch, but to get a school reading book and read five stories from it to me. FIVE! Very exact. She didn’t flinch when in the background, her sister started screaming and crying. My tension increased. But I didn’t want to abandon her because of her sister. I don’t want them ever feeling their sister gets too much attention.

I am faking being ok a lot. I don’t even have time to cook for myself, folk. Zero. I can’t eat the legumes they can. The onions, the couscous. So I need my own separate meals and I just don’t have the ability…And their dad returning from his holiday in Japan won’t change anything. I’m still the one they wake in the night. I’m still the one who listens when they read. Still the one my not many words twin asks for “chocklit” after seeing it on the Starfall educational app. But my stomach is already sore and full, heavy and bloated. And he will never care.

Cursed is the wife who is not loved by her husband. I need a mommy. I wish I had one. I wish I had memories of having a mommy.

My dear 11 year old stunned me yesterday. She was talking about how a husband should be taking his wife to do tours of Japan…I didn’t even bother reminding her how the same man who can take all these days off work refuses to take me to the Emergency room “in case I’m late for work.” And on that note, he loves boasting that he’s a CIO so everyone fears HIM. So..in the same vein, what would he suffer if he was late for taking his sick wife to hospital? Nothing. Unless of course like in 2016, he gets to work and phones his floozy before their work days gets busy.

As she went on about how he’s unloving, she asked, “But whose idea was it for you two to get married?”

I told her, “He asked me to..” Let’s not go into how he technically never ever asked me. He wrote it in a CARD that he left by my bedside for my friend and I to find after our exercise session.

She asked me why I had agreed to marry him. I told her that I didn’t know he’d become even worse than he had been, he had promised to stop being too close to other women, and his sermons told me he loved God. But he lied.

She then comforted me, “Don’t worry. I also thought he was a kind daddy. But now I know he’s not. He lied to both of us.”

I have nothing else I can say. To think I owed it to her birth family to remain a two parent family when as soon as her birth sister heard about he is as a husband, she wanted me divorced and free. Assumptions. She’s a wise girl who immediately understands there’s no cure for a narcissist who doesn’t want to get a heart.

I already felt guilty in the morning when Twim B decided I had taught her twin long enough and she wanted me to go where she wanted to. Thankfully that little tussle didn’t last long. But it wasn’t good because all my ADHDers need hands on teaching and I can’t be hands on when I’m being pulled around.

Fast forward to tonight and the guilt hit again. Yes, it strikes during the day too but this one was more in my face. I was making stew for the children and Vi, and also planning and choosing school and skills work for tomorrow. I had asked Twin A’s biggest brother to brush her teeth while carried on looking at which lessons should be done tomorrow and what resources they need. Eg. Different book, the

Then I heard it, “SOMEBODY!!??”

Twin A! Was she in the toilet and needed toilet paper? I left the school work and went to look for her, finding her in bed. She’d wanted someone to put her to sleep! And nobody had🥹. She had to yell for it. The guilt was terrible. I’m meant to be her soother. How could I forget her when I’m the one who had told her she could sleep?

My children went to go drop ironing off at an ironing business earlier today. Yes, I’m jumping from one time of day to an earlier time. The sweet employee told the children that I “gave birth to beautiful children”, meaning all of them! My poor Amarissa said it made her feel sad because she wasn’t born from me. I told her the fact that nobody can tell there’s a difference between how she is loved vs how her siblings are loved shows how she’s a natural part of the family. She felt better.

And also, her talkative twin was then reminded of how Ammy had begged for a baby sister. “You just had to be patient when you were asking for me!”😂she told her sister.

Speaking of ‘family…’

I posted a video on YouTube and recently where I share about the financial abuse I’m subjected to and have been subjected to. How my pitiful wage for caring for, raising, doing therapy admin, school research (Everybody has blanked me despite multiple attempts for a school for my boy) is scrutinized as well as purchases I make for my family. I don’t have my own account except the one the pitiful ‘stipend’ goes into, so everything I buy is seen by the Boss. And the boss has been claiming we will be broke by year X because of my spending.

Yes, not because he gave away half a million rands to his whack brother despite my definite no. Not because he’s secretly giving away tens of thousands to his floozy. But because of the money he knows of, that I’m spending on members of our family. Not because last Wednesday he paid for lights to get to Tokyo for a marathon, hotel fees, your fees for four days after the marathon, but now extra hotel fees because the Dubai route is shut, different and extra flight ticket costs, and more hotel nights. But somehow all the money that will allegedly run out is my fault and never his.

Miss me with that. I don’t fall for manipulation, gaslighting and control. Especially as the ‘money is running out’ only started out of vindictiveness after I had found out about the money being spent on his ho. I don’t bother reading any “financial analysis” that suddenly comes because it doesn’t have all income included. Nor all outgoings. That analysis would have worked when I was 20. Not now. I have found myself now.

What I do think about are bladder issues. Pun intended. My 11 year old is still having pee accidents despite the consistent ‘every 29 minutes’ alarm I set throughout the day. An alarm she hates and complains about. She came asking for new underwear and pyjama bottoms this evening because somehow between toilet visits, she’d had an accidents no physiological reason. Not good. The washing powder, fabric softener, the clothes and under clothing that need daily washing…I have more pressing things than worrying about a man who isn’t sure when he will return from his holiday.

So, what gives me a piece of happiness? Good things, good people, funny moments. Like my six year old telling me I don’t need to teach her about nouns today because she studied what nouns are already from somewhere she can’t recall. She was right. I just got her to do the exercise linked to the lesson and understood it.

My dear Amarissa might be behind academically, but she’s doing well with her Grammar lessons despite her learning disorders! Same with comprehension skills, She got nothing wrong for one of her tests and I know that that will motivate her even more!

And my ‘scratching everyone and pulling their hair out their scalps’ twin daughter was quieter today. No screaming and attacking! That’s a win, right?

And so, as I now prepare the last child’s school work (Computing) at 22:00, I thank you for sticking with me. Flydah, thank you for showing me you see me. Karen, I am thankful I can put some of my venting on here so you don’t have to deal with all of it!