They said I should write a book

I exercised DURING THE DAY TODAY! Usually, I have to wait till my girl is asleep, which can be midnight or ten pm like last night. I can’t relax and exercise when I know she might come in and pull me, so I have to be sure she’s dead asleep. And by then, AS pain is at its worst. So to do my shoulders and back during the day, uninterrupted, was amazing for me! The children went for a super long drive that allowed me to record their nature lesson and exercise! Woohoo!

It’s the little things.

Another little thing is my new laminator! My other one served me faithfully for 14 years. And it had been cheap! R329.00. But, it was getting tired, crumpling up my work. So I had to put it out to pasture and replace it. I upgraded. This one has a blade for me to cut with! So much faster!

Every little thing that makes my teaching life easier, is a privilege.

I’m in pain. From feet to shoulders. It’s been a bad day today. I also think changing diapers wasn’t a good thing to do! I couldn’t even study in the morning because of the pain. And no matter how many tablets I took, it didn’t make a dent in the pain throughout the day. Do you know how long it had been since I had foot pain!? Ugh! It’s like someone drilled into my heels and is hammering the drill bit into my bones.

In the meantime, I’ll be thankful for one last little thing. The excitement my six year old feels when it’s Computing class. She can go on and on! I know it’s because she enjoys entering code into a robot and watching it follow her commands more than just the learning, but it’s cool! She never gets tired of programming that little thing.

Also, her excitement when she finds something that alludes to God. It’s like I’ve not been telling her for three years now that we’re using Christian curricula! “It’s talking about God! Does that means it’s Christian!??”’with a big smile on her little face. I don’t know why, but it’s refusing to upload my little video. The conversations are so random. Today, I found out she thought Jesus was God’s friend. Now, bear in mind, I’ve explained God to them. And I’ve told them Jesus is God the Son. But the brain is mushy so the information hasn’t stuck.

I love how I told her it’s like her and me. I asked if we are friends and she said yes.🫣😅And then I told her she’s my child. So Jesus is like God’s child and they are one family that loves each other. Sorry if that isn’t how you’d put it. I have a neurodivergent angel whose memory retention skills are poor. Just run with it!

The means to afford everything I need for the children’s education? A big thing I’m thankful for.🙏🏾

And one last thing? My girl interrupted my first meal of the day 19:05 because she wanted the lamp. She wants it on but it can only be on when plugged in. She wants to walk around with it. I hate autism and intellectual disability. Will she ever stop wanting the impossible and insisting on it? Will she ever be able to understand and reason when we explain why what she wants can’t be done?

I don’t know.

And that’s a big thing because it disturbs school time, rest time or meal time and she herself is unhappy.

Just a small glimpse of this morning’s autism moments. It started in the morning. Now, let’s go back. I’m on steroids, must use my inhaler four times a day till I’m healed, instead of the normal four, pain meds, antibiotics and glycerin to coat my mouth sores. And I am not being very compliant. Not by choice.

In the morning, this strong one refused for her biggest brother to dress her. She came and got into my bed soaking wet with urine. At first, she wouldn’t even let me change her. I hadn’t taken my pain meds for the AS that is now running free through my body while we wait for me to recover so I can use it. Oh yes, the tongue!? It’s high inflammation in my mouth. Yuck.

So I’m moving and hiding pain. Bending is bad under normal circumstances, and diaper changing should not be performed by me at all. But what else could I do? I broke my lungs and bones even more after she eventually allowed me to change and dress her. She’s still got a blocked nose so that’s not been helping her feel ok. I couldn’t even finish dressing her. I ran out of breath before I could do her upper half, so I let her stay in bed and covered her up and turned the heater on while I contemplated my misery.

I ate breakfast at around 12:30. I took my prednisone after that. Of course I’m wide awake at midnight! It was too late!😫But more importantly, being mother and teacher means you forget yourself. Yesterday, I only used my asthma pump once. The night was sleepless with wheezing and coughing and breathlessness.

My poor friend had a panic attack when she didn’t hear from me yet her messages were open on my side so they seemed to be read but not replied to. It made her worry big time. 🥹I was having a panic attack of my own. A stress attack! I was so helpless and sad! While unbeknownst to me, she’s reaching out to me, I was crying out and wishing I could Philip (when he appeared and disappeared from the eunuch) her from her job and make her appear here to help me. My girl just wouldn’t let me lie down and help me try ignore the AS pain! She was out of sorts and so was looking for nothing in particular. Pulling me here and there but not knowing what she wanted. I tried to break free as the pain was bad and I was so tired. Just a few minutes before that, my leg had given way in the kitchen and Micaiah had offered to be my human walking frame. I was in agony. Lungs, bones, bad sleep thanks to a very loud ship horn that had been going at around midnight for four hours since Saturday night. And just malaise from being sick.

Plus a large dose of penicillin induced diarrhea.😫

I was (am) unwell but couldn’t get a rest. Demoralised. The only centre that takes kiddies with her intellectual level isn’t for autistic children. I have nowhere, no options. The sense of helplessness and sadness was so overwhelming that I threw a box into the wardrobe and screamed in frustration, bringing my poor boy running to ask what’s wrong.

I don’t lose it like that. I can’t cope. I cannot cope. I didn’t use my asthma pump four times today and it’s almost midnight.

If I lived alone, or if there was a special school for non potty trained autistics she could attend, I might have had four doses today. I’ll try tomorrow. My life depends on it. As do the very children who cause me to scream, depend on ME too.

I truly believe my friend sensed my internal screams wishing she was here to save me. Help. Please help, Lord. I cannot do this. Find me a centre. A good one. I’m even willing to send our aide with her. We just need to find one. Pray I do.🙏🏾😭

The one positive? Remember how I mentioned that people of both genders took care of women who were disabled and in adult diapers, caring for them with their sanitary towels and all? Our facilitator aide is a daddy of two girls. In the late afternoon, he helped change my girl for me. Boy was I thankful. I have help while we wait for someone to replace Vi. The pickings have been slim. That’s a story for another post!

I just hadn’t put the two together, so I wouldn’t have reported them together if I’d gone sooner. Amarissa was wondering why, unlike them, my flu symptoms are worse, and why my painful throat is not easing at all. It began Sunday and just never stopped. Talking, swallowing hurt. At night, the pain wakes me. But I put it down to the severe cough.

But there’s my tongue. I felt pain. I figured I had sores and tried to treat them. Rinvoq has done such a stellar job getting rid of my rogue immune system that now I finally got sick, I’m paying the price. Also, I am also nursing the children. So the thick furry feeling along with the pain that increases when I try eat, and when I have to talk (Do you know how much talking five children require!??) didn’t even register. I just knew I needed to get ahead of the wheezing and crackling chest that’s joining the fray so I made an appointment with a GP for tomorrow morning.

Till tonight.

I looked in the mirror and saw white taking over much of my tongue except for two small patches of normalcy that look as if my tongue was SCRAPED away there (according to my eldest) because of how full of inflammation the rest of my tongue is.

And my friend’s question, “What took you so long to go to the doctor?” was now more than right. Google says if you have chest pain – I do, if you have trouble breathing – I do, if you have thrush and the flu -I do, if your throat is sore and you have thrush-I do, get urgent care.

I won’t.

Is my throat sore from a whole lot of inflammation as seen on the tongue? Or from the virus? Or is it now have a bacterial infection and I need antibiotics?

How long will it take to heal? Is there anything at all they can give me to reduce the throat pain? OTC lozenges and sprays make no difference at all. The lozenges just hurt my sore tongue.

Did you know Sjögren’s increases your risk of oral thrush? I didn’t till now. Is it thrush? What is it?

All I know is that I have one friend unimpressed that I didn’t see the doctor faster..

Please let me find quick treatments tomorrow. I need more sleep if my twins will allow me. I loved how Twin A said she’s sure I slept well because she didn’t come wake me last night.

What she doesn’t know is that I’ve been awake since 2:30am anyway, thanks to her TWIN and then my painful throat! But it’s cute that she realises her wakefulness and coming to seek me have an impact on me and notices or assumes I got more rest when she’s had more rest. Very sweet.

Thank you, my two sisters, for worrying even when you don’t see me daily. You and Amarissa make me feel cared about. I have an adult man who comes in and out my bedroom, who is an emergency contact, but has no idea how sick I am because he couldn’t care less. If I keeled over and died, he’d not even be able to tell the pathologists that each cough hammers my head with terrible pain and I can’t swallow and the saliva is thick and choking me, my entire mouth feels like it’s been cut and each bite feels like salt digging into wounds in my tongue and gums so I’m not finishing my food and and and…

I nagged eldest and he will go in a few hours after me.

Shabbat shalom. Continued good health to those who have it.

I need Violet! Someone bring her back!

I have a dear friend nearby who keeps reminding me I am welcome to go rest at their flat. Who asked this week what she can do to help.

But I don’t even know. The children don’t know her, she’s also sick and broken and can’t get down with them to play. But also, I can’t go away. I had planned to when my eldest had been around, but then our fecal impaction patient was headed in that direction again so I had to be around to medicate. And honestly, I feel bad that their father already puts so much on the eldest two. The number of times I’ve said, “But the twins are not THEIR children, YOU are the parent!” can’t be counted. So I don’t want to add to their parentification despite my daughter insisting I go rest.

This week is probably one of the worst because I’m fighting at the same time the children are fighting. The AS flare from hell is still here. My stress levels are also through the roof. And that’s not because of the usual mayhem and chaos, but also extra sickness. And that’s the other reason it’s good that I didn’t go and rest this weekend.

Poor Ammy slept the entire weekend and didn’t eat. Now as you know, given her girth that has sent me to another doctor’s appointment for her this week, not eating, sleeping, are two red flags. ADHD people can’t sleep all day unless they are very unwell. She had a headache from hell. Sunday, I overheard her asking her brother to turn the light off and I got the hint. Migraine. Could this poor child also be fighting migraines on top of the challenges her brain is bringing her??? No!!

But, after I emailed the doctor her symptoms, the LACK of a fever, the malaise and desire for darkness, how long it lasted and how headache pills didn’t help at all, his opinion? Migraines.

I’ve never had them. But I know how cruel they are. Someone who has rhem described AS as a migraine of the body. How does a little girl deal with that?? I had pain day and night since I was three years old, but my mind was only fighting parental negativity, not fighting itself like hers is. And above was the paediatrician’s response. Migraines it seems to be indeed. Poor girl!

I hate seeing my children suffer. Watching them suffering consumes the pieces that aren’t busy dealing with a six year old demanding rice crackers at 5am like my one twin did after she had wet the bed and I had to go change the bedding and her pyjamas.

She too was already sad about her sister yesterday. How will she handle another day today? Not because of a migraine, but she seems to have caught a weird flu or cold from Twin B who also has it. Mostly blocked nose and crankiness, fatigue and a side of irritated

And so, again during the week I couldn’t go rest at Elaine’s place. Who would medicate the angels? Who would be watching over Ammy, ensuring she remains hydrated, and keeping track of how often Miss We Do Not Want to Return to Hospital is pooping?

The same one who had to do it over the weekend. And so, she asked what she can do to help me. And I had no idea what to say.

It’s like it all rests on me. Reminds me of the psychologist assessing the children asking me what would happen to them if I died. Elaine’s question has no good answer, because the one thing I CAN ask of her, she can’t do because she’s also broken. Just to be with the children during the weekend so I can rest a bit in between the meds and the planning. I need that. But she can’t give it.

And I think that’s how so many of us end up isolated and so alone even with special needs resources like the West has. And that is why that Australian couple with two autistic sons ended up killing the children, themselves, and the dogs. People asked why they couldn’t “at least” spare the dogs.

Because the dogs would miss them.

I hate and fear dogs but I’ve seen the way they mourn their owners. I’ve read of them traveling miles (it’s always overseas so that’s why I use miles) to go back to an owner that had given them to a new owner. Why would they make the dogs suffer pain? It was an act of mercy. And this is two parents dealing with the strain. I’m just one. I get them, even about the dogs.

Crazy that an anti suicide Christian gets what non Christians don’t.

And thus, we circle back to mental health. I had to go to Ammy’s post test result review with the doctor who will be in charge of her birth control and seeing what works for her PMDD. See? How can I sleep when I have to sit and hurt my back and pelvis waiting, then seeing a doctor? My dad used to say to me “Refilwe-Rose, you see!? No rest for the wicked!” when he’d want to be working in the garden, then bake, but instead an unplanned visitor appears and disturbs his plans.😆😅 That’s how I feel. No rest for the wicked. Do something productive while other productive things wait, but there’s someone (or five ) needing entertaining right then.

I’m typing while medicating my blocked nose girls (Ammy and Twin B) for their sicknesses and answering calls about her migraine medication. First one was because they only have the generic, second to ask if I’m “ok” with the co payment I’ll have to pay.

I’ve been paying copayments since February. I have no choice. I’ve paid R3500 this week and now R59 today. At this point, I think of the pharmacist who said she feels sad that I will never have money to treat myself because it’s all going to medication. Who needs rest, relaxation and rejuvenation!?

And I need help. And this is where Vi comes in. As she so sagely said, “Mummy, you need someone who doesn’t have children. Then they will be focused on working. You need help every day.” (The facilitator had been gone for two days because his baby had a skin infection. My children asked why the mommy can’t take care of the baby and why he has to be gone for two full days yet he’s also going on leave the entire following week. I had no answer. Some people are born to be parents more than employees. But autistic children need as much routine as possible.)

But, every one who came close to being a good helper has children. And our current in probation young lady knows how far from ‘close to being good’ she is at the moment. Another strain. It doesn’t help that I’ve had two great employees so I know what’s possible. Contrary to the Zimbabwean who said I expect too much when I asked why she’d walk past a table made dirty by children’s 12 o’clock meal, to leave at 16:30 when our formal agreement upon finish time is 17:00🤯

Siyagezeleka thina oomama abantsundu. They’d never act the same with white bosses, and that’s a cry many Black bosses have made about domestic workers.

Anyway! If Vi was here, she’d tell me to ignore the crazy happy noisy twin B who is up till midnight. The night from hell was made less hellish because of her. The night that happened after the father had refused to take Twin B to hospital. During the day after the refusal, she’d seemed to be better. But two nights later, he in Japan on holiday, me having asked Vi to sleep over, she was sick sick sick. Screamed and cried and needed to sit on me but only on a chair. She wouldn’t let me lie down with her. My back and pelvic bones were so bad I asked the children to wake Vi up.

She did.

And not only did she sit with her for a while to give my body a break for 30 minutes, she acted like I was nuts to want to take Twin B back after I kinda recovered. She said she’d sleep with her, seated if need be. And told me to sleep.😭😭😭I couldn’t. So I got her an extra blanket which I know she didn’t want me to be doing.

Eventually we all slept. She refused to rest during the day and not clean. What kind of employee wants to work all the time? Being her back!! 😅And then Friday saw the hospital trip from hell when I ended up phoning their facilitator to come help me.

And that’s the other thing. When I do ask for help, like asking the father to take his daughter to hospital, I don’t get the help.

Just like when I learnt at age five not to bother my parents when the (now we know it’s AS) pain would hit both my legs from knees down, and I’d be in so much agony I couldn’t even breathe. It’s so upside down, this world.

The doctor who is meant to be treating Ammy’s PMDD has no idea. She only knows that Ammy on her own, is too much for me. And knowing what the other children’s conditions are and that I have AS,, she told me I’m “faking it very well” but there is no way my nerves and nervous system are not raw from the stress and strain.

We agreed on a plan for me. I’ll see her for mental health help. Not therapy. But medication. Something to put a cover over the raw nerves so that they aren’t tortured as much as they currently are by each assault. (Her words)

Good plan.

It was breakfast time just a few hours ago. Helper had put the chairs on the table. I was about to bring one down but the children’s facilitator stopped me, saying he would do it.

Readers, my stupid eyes (not I!🫣) wanted to cry. Do you know how embarrassing that would have been? But it shows how barren my life has been. You saw the videos where the father is playing on his phone while I’m taking heavy garbage out to the bin outside. You’ve seen how I’m the only doctor and nurse and therapist. You’ve seen how I asked him to learn the children’s vision work so it’s not just me doing the exercises each day but he refused.

It honestly came as a shock that someone would notice I was bringing chairs down, and stop me.

She had better bring all the meds for my nerves. Who cries over someone being helpful with chairs?? Bring the meds…As long as they don’t cause weight gain. I’ve lost a lot of weight through hard work and with AS, I can barely move so I can’t try stay stable by exercising MORE. And I do not want to end up like Amarissa on diabetes meds.🥹

Why is life so complicated, people!? Wouldn’t you just love a year with no chaos and suffering? Just one year out of the decades we’ve lived? I would! What a reset that would be!

I am lying down for a short time, crying and undone. Completely undone. I can’t take the strain any longer. I can’t be everyone’s saviour and protector when I myself need nurturing and care.

I am tired. Tired of being the only one who worries, nurses, doctors and has no support whatsoever. The tutor aka facilitator spends whole days on leave for something that does not need even one DAY away. But I can’t replace (He knows he’s got no more warning left but only a firing due to other reasons so it won’t be a shock) because I have no helper and the children need to get used to her first.

But the process of finding a ‘her’ is proving laborious and stressful. People with fake permits. Malawians have generally never received refugee status. So why even try that if all things? But the stamp was in typical Malawian English. “temporal processing office!” Vs temporary!

Most are from some agent person pretending to be multiple people, or speaking on behalf of multiple people who probably paid her for work placement and then she’s pretending to be doing the vetting, and then not pitching up. Realised when two gave the same excuse for not having come when I asked what happened to the interview. Panic attack, one said. She was stressed all night nervous about the interview. Another said she got nervous. After I confirmed an hour before arrival time, no less.

I’ve discussed with many people, over 12. Planned and booked interview slots. And only two have come. Lots of wasted? Precious mothering time and wasted opportunity to communicate with someone who actually wants the job.

I need reliability. I need help. And I need rest.

But instead, I have the Ankylosing flare to beat all flares this year. This is the big one. I couldn’t wake up at 5am. And this is after our girl actually slept! She did not make noise and cry till 11pm like she usually does. She slept and I was waiting for her to come out her room, so I didn’t relax till midnight. Ok, most people wouldn’t have been able to wake up anyway at five. But it was like I was trying to wake from general anesthesia. That heavy AS fatigue. So I slept till 7:15am. That too, is not me. What woke me was our non verbal angel shuffling into the room after opening the door wildly as if being pursued by a criminal.

I’m typing and hiding in my bathroom. But my ten year old is outside my door. He has walked past all bedrooms to get to mine and what is he asking me? If his sister -whose bedroom he passed -is awake. That’s what I mean when I say I can’t get a break, a rest. It’s not only physical, but I can’t get a break from irritating intrusions or questions. Whatever will interrupt me is never serious or necessary. And that becomes tiring and frustrating.

“Why are you walking like that!?” Asked my six year old who had come to ask for Prestik, as if I was being stupid.😅 I couldn’t move my right leg! “Mom, you need to lie down,” said my eldest. But he’s had to take our Twin B for a drive so I have to keep medicating. *Picture me crying internally in self pity.*And each step was (is) a shooting pain. But I had to keep moving to give every little one their antipsychotics, antidepressants, mood stabilisers, anti ADHD insanity meds, allergy pill, beta blocker… My fingers don’t want to fold to hold the tablets cos they’re too stiff, my right hand feels like it’s made of heavy cement with pain running through each finger. Back muscles spasming as if in labour and bicep muscle sore and achy! Hurts even more to bend my arm to drink water with my tablets! But wait, I can’t rest

I need to take my girl’s BP. I told you I get no break from being doctor and nurse! Ammy who suddenly had a headache last night and felt dizzy. I gave her a bit more of her heart med and she went to bed ‘only’ feeling dizzy.

Her BP was fluctuating wildly this morning.

Five minutes later it was the opposite but still bad.

Her tachycardia is still present so I gave her her beta blocker, and a pain pill that she got for the knee injury last Sabbath for her blinding headache. My Sabbaths are never “pleasant” like my friend wished this one would be.😩

And another ten minutes later she was more relaxed. I’m hoping her heart rate will also stay stable too and her numbers improve.

Why is she like this?

Delayed side effects of the iron infusion. It’s normal but awful. Can become full flu symptoms, fatigue like she’s feeling.

And that was why she was in bed when her little brother came to ask me if she’s “still sleeping.”

But now she’s up. She decided she didn’t want to miss out on a trip to Helderberg Nature Reserve that I suggested they take so I could have time alone. And our paed appointment can’t come soon enough. No 11 year old Angel should be wearing clothing much larger than that of her menopausal mother.😭Her BP can’t be normal anyway while clinically obese and hasn’t been for a while-just not as bad as today’s numbers. I am hoping the paed makes a plan so she stops growing bigger and sicker.

These are size 16 clothes. Adult size. (Our sizes are like UK sizes for my one reader in the UK. I see you!😉)

There’s a lot swirling through my mind but my back is spasming so much that it’s not even able to focus on each thing. It’s like I’m pregnant and the baby is kicking my spine, that’s how the spasms feel. If you have IBS, you might know the spasms when our colons cramp up and ease them cramp up again during our IBS flares. It feels like that but faster and stronger. Contractions. Time to take my muscle relaxant! I’m very slow.

But my excuse for forgetting my tablets is that I had to continue my lovely Sabbath discussion with my friend on the resurrection of our Jesus. The way the women were the ones given the message! THE message! But sexist males refused to believe them. I posited that given Christ was so specific and intentional in everything He did, going to Samaria to show the disciples He loves everyone, it’s highly likely He wanted the disciples to value the women they way He valued them. And what better way than to have them carry the fists gospel message post crucifixion?

With how Tabitha aka Dorcas was raised from the dead, the lesson was learnt. Women are just as valuable and as useful as men. Ignore what the Pharisees have taught. See how Christ sees.

Wow. I’m in so much pain and I’ve taken every pain med I can take.

So stressed my shoulders are by my ears and can’t even try exercise it away! So cold my bones feel like ice. Hehe. What a litany of complaints. I can’t believe anyone reads what AS is like! People have become so unloving that it’s odd to see repeat readers of what is basically a diary of an incurable disease or four. And incurable disorders. It can never be a happy blog.🥹Yet Flydah keeps commenting, too. Thank you!

Oh, breaking point? I can’t take it all. I am pretty sure the extreme AS flare is due to the stress I’m under. And I don’t know how to reduce it. I can’t find a reliable helper, how will I find a reliable tutor and driver? I can’t make my children well and I can’t clone myself. I am helpless but the problems don’t decrease in proportion to how helpless I am! I can’t find any curriculum for the first grades of the differentiated CAPS curriculum but there are a few for age 14-18. We are very far from there! But a normal curriculum isn’t serving the two. I need my children in a school. But I can’t afford private and no communication for public. All out of my hands. Like the divorce process that’s also causing me mental strain. Ok. Really good bye. My wrist is dying.

I answered in for affirmative and asked why she even asked that so many weeks later and so unexpectedly! Seems my mentioning how I don’t get any time to eat during the day matters to her. That, is not MY norm. Nobody else has worried about my not being able to find rest or a break to eat during the day.🥰

Yesterday, it would been a no. I tried to make time to eat, I got as far boiling water in the kettle. I then only ate at 21:00! I look at my grapes, my gluten-free sandwich prepared yesterday as I walk past to and fro doing school work.

Another one I was asked today is how I’m coping with the housework. I am NOT. I never sat down to get proper rest even with househelp. Without it, it’s a losing battle. And nothing in the home strips my peace of mind like clutter and dirt. Give me noise anytime. But mess and clutter? Watch me take things off a sofa and then an hour later even more than you removed is back? Especially with children’s facilitator that didn’t pitch so it’s all too crazy and not school friendly? It kills.

What also kills? Being a single mother when I should not be one. I want to move two of the children to a South African special needs curriculum. The ones we have are still academic and I pick and choose which is applicable for them and the direction they can head towards. I wanted something needing less research and giving more research. I also wanted to be able to match what the public special schools use. The private ones adapt a British special needs one. But our SA ones use an adaptation of the national curriculum. Except, there’s no actual workbooks given by the education department, no textbooks or teacher guides for what we should teach. They just tell us it’s 80A% practical. How do I make that REAL? How do I implement that? What do they expect from the child at the end of a level? No idea.

And I have no fellow parent to discuss that with. The victories we achieved during our home education journey didn’t matter. The difficulties matter even less. For a man who views glasses as a sign of ugliness, other disorders are even more distasteful. Hence the way the infidelities started when I was in the midst of getting diagnoses and assessments for our now ten year old. And why he resumed when the twins were also broken. I now believe he decided to conceive instead of adopting as planned, out of a desire to NOT have a broken child.

Instead, he got two ‘broken’ children. And I’m the only one raising them and loving them. And sometimes, it stinks. A feeling I’m sure many ‘not by choice’ single mothers experience, given they didn’t make their children on their own.

For now, I am thankful for the teacher friend who noticed I mentioned my DCAPS desire mentioned on a different sm platform, and is looking around for resources. 🙏🏾

We don’t need necessarily need men, we need companionship and a circle of warmth and concern. Blessed are those who provide it even from afar.

Back in 2015-2017, we had a lovely lady become our helper. First help I ever had. She was lovely and no other could compare to her after we left the area except for Violet trailing here behind our girl at 23 Jump Street.

I’m trying to understand why it’s so emotional saying goodbye to Violet yet I felt nothing with Veronica. The best I can come up with is that Veronica never heard my problems and never showed any affection for the children and babies. We spoke about her problems. I was her encourager, I wished the best for her daughter. I drove down to her neighbourhood to give her daughter a gift for being the first in their family to finish high school. She told me about how the other Coloured people in the neighbourhood laughed at her for working for Black people.

I never told her my husband was being unfaithful. It was during the days when I lamented online, the fact that everyone treated me like an unpaid counselor and psychologist. Besides my social media sisters, every ‘friend’ who had my telephone number came to me for counseling, therapy, advice. A friend acknowledged it once. She said she’s a terrible friend because she never ASKS yet I always do. She was one of them and I only realised today. No wonder I didn’t feel sad. It was superficial. Boss and employee.

But Violet, the first time she came to our home, very first time, she spoke about me. She told me I was very different to other Black bosses. She saw me and said lovely things about me. She shared her heartaches about her children, but also loved mine as if they own her heart. She shared photos of them on her status always. They were (are) her children and she is-in their little autistic PDA world-their friend.

I will acknowledge this. I am a good woman. I always mention my youngest brother in law hating that my blogs were always titled “Imperfect Mom.” He said I was the closest thing to Christian he’s ever met. That I was doing everything I claimed to believe in and had a good heart too. I always took it as a comparison to their family. But maybe I am just good in general.

I know one thing. I was raised and then gaslit into always giving. We had Veronica but I’d iron on her off days so that she doesn’t think I kept the ironing for her. To prove that I don’t feel like she’s a slave. But in Veronica’s eyes, who knew she’d left ironing, it meant I didn’t like the way she ironed and she told me to correct her! Stop being nice!😂😅So I told her why I did it. I don’t think many bosses hear that.

Also, my children. I think of my best friend and the children where she worked. They knew she was “the help” and even rudely told her it’s her job to do a, b and c. Meanwhile, my children told me it’s amazing that Aunty Vi and Uncle Tashreeq just randomly came off the street to play with them and help me. This is this year! All this time, it never dawned on them that they were paid staff who were being told what to do by a boss. To them, we were all equal. They thought Aunty Violet LOVES to clean and that’s why she was doing it.

It came to a point where if I managed to get them to tidy up, they’d tell me Aunty Violet would be impressed! If they saw me using a broom, they forgot all the years of seeing me sweeping and told me not to touch Aunty Violet’s possessions!😅And if they couldn’t bring themselves to tidy up -it’s truly difficult for adults ADHDers too-they’d tell me not to worry, Aunty Violet will be very happy to do it and if they did it, then she’d be bored and sad because she likes cleaning and she would have nothing to do.

I am proud of myself! I never allowed them to disrespect anyone like my friend’s bosses children did. But, they do have PDA. So they scream if they think she’s about to get rid of something they believe is a treasure -usually tiny scraps of paper! They blame her for their things going missing because she was in their bedrooms. 🤦🏾‍♀️

Where will we find another soul who will work well and also love my children well? The very first candidate stole money I gave for transport and they’ve all been so dire that I only have called one for an interview and before she even left, the children were telling me not to hire her. The one big reason? Discombobulation. My son spoke to me so shocked, asking if it’s ok for women to have a moustache. It really bothered him.

My first reason was that she mentioned how she told her daughter she’d better help her lift a bed to look under it. You kinda have to be moving beds and all while cleaning. Everyone else after that has been bossy even before they come, have said they have autistic family members, but then don’t pitch, or tell me they are far away with their boss and the autistic child (It’s school holidays for the general public), but can leave them and come take the job! I asked what would happen if the interview showed problems and I didn’t hire her? She’d have used money to come back early.

But most importantly, most are currently employed but show no compunction in just leaving their current boss in the lurch. They have children they are caring for but just want to depart. Without warning. That is a big red flag. I don’t like someone who has no concern for others. And they leave because they want more money. There will always be someone offering more. I am not rich. I’m not the white folk who pay a salary, pay extra for transport and also pay the domestic worker’s school fees. I’m a mother who is about to have less money.

Violet came and stayed just as I had asked. My inattentive husband paid her R500 more than he should have for some months, because he’d forgotten her salary. She earned every bit of it anyway!

It’s been emotional and terrible. I have never wept in front of my children. But these ones never give me space to be alone, so one came and found me while I wept. Violet was not only the help I needed and the hands I could not be, she bore a lot when our girl was in her “attack people” phase. She went to change her diaper where she was, she picked her up when she refused to be changed but was soaking wet.

The stereotype of a hard worker. She and my best friend share those qualities. They give extra to their work. There are South Africans who work hard. But they’re a very small group. They have been a blessing. I hired because I need the help. And Veronica and Vi never took a single day off. That was a huge blessing to me. I need the help. (Yes, obviously Sabbaths they didn’t work. And public holidays were always off.) I hope and pray I find someone like that. My body is broken. And I am tired.

I don’t even have space to cry without a child interrupting me and then me making them cry.

With a good worker who enjoys their job and is committed to it and our family, a part of the burden reduces. And I need that small bit of reduction.

Thankful I got it from Vi who even hated taking December non public holidays off and forced her way in on the days I allowed her. A breath of fresh air and these lungs are in need of the oxygen.

God bless and travel with her and her sister. She has built a legacy for her children. I pray they appreciate the sacrifice it took to buy a farm and hire workers. She will rather labours of her hands with her daughters. I hope after all these years gone, the adjustment to her being the real mother goes smoothly. We both foresee a bumpy road and it scares her. It’s not an easy goodbye even for her. She already she’s tears in Friday.

Today is her last (half) day. Every second Sunday came half the day. It was to babysit while I went to the store with my husband. When the last bit of love died, I stopped going to the store and she came to clean and hang washing.

She will not spend all of this shift cleaning. My girl will be limping along with them using my walking frame as they go somewhere different one last time.💔

Can’t bear to checking and editing. My heart is broken.