Author: Grace by any other name

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!

Sjögren’s disease has my digestive system in a stranglehold. Twice now – the last two mornings- I’ve had the burp of fermented food! I googled and yep, Sjögren’s does that! Your ability to move the food out your digestive system slows down due to lack of liquids in the digestive system so you have all the issues I have. The constipation, feel full but still hungry, burping OLD fermented FOOD which makes me want to vomit, pain so bad I woke up Friday in the night thinking I was having some horrible kidney stone pain.

The solution? Or at least, the attempt to reduce the symptoms? Have small soft food meals throughout the day. But I can’t do that. Eating while stressed is bad for the digestive system too! And during the day, from 6am to 20:30, I am stressed and constantly interrupted. If the children are on a drive, I record or edit, I don’t relax and eat! If not, I’m preparing school or reading up on activities to improve executive functioning…

I don’t have time and space to eat during the day. And eating one big meal at night? Worst thing a Sjögren’s person can do for their health. I’m in trouble.

I have bad nights… Horrible days. I lived with no night time AS pain and reduced daytime pain for six lovely months until stupid Sjögren’s. I had energy but now Sjögren’s has stolen it. I wake up and have to almost pull my eyelids up to put more ointment in my eyes, drink more water. But still, I catch myself reflexively rubbing my eyes and then getting scared I’m making the existing damage much worse.

I cannot accept this. I don’t want to. I want OUT! I don’t want this life. I am tired of never ever being ok! I am damn tired of not being ok. When the junior guy at the opthalmologist’s was doing my tests, he was shocked I’ve worn glasses for 35 years. I thought, “That’s nothing! Try suffering pain since age 3…42 and a half years of misery.”

I am tired. I wake up and force myself to shower, get dressed but the truth is, those use up precious energy.

I am ready to depart and wake up like Lazarus. Perfectly healthy.

But in the meantime, though it’s killing me, I will keep my children -from the sick 20 year old to the youngest, eating. I was sooo pleased they wanted more! But oh, I wish I had a partner to take my little ones out for the day so I could rest.🥹

I..want..out.

By the time I ended this post, she was crying a loud. 6:20am. A very long tiring day has begun.

I couldn’t walk.. for a while today. Last week, I took my walker out to the garage. I hadn’t used it in months! That’s how well Rinvoq is working! But today, I had to ask my children to bring it in, all because of their sister.

As you know, she has had a rough few weeks that have been progressively getting harder and tougher on all of us. She has been screaming randomly, crying for prolonged periods. And we don’t know why. Before, she was crying because she was having a tantrum-she wanted something and if we couldn’t make it happen, the tantrum starts, stuff like that. This was like she’s in pain. It was horrific. She was so loud that her aide could hear her while parked across the street in his car, our house closed up as tight as possible so as not to bother the neighbours. When she starts, I go round the house shutting all doors and windows.

It is horrible. It raises my already existing anxiety and stress from raising multiple special needs children by a lot more. I already don’t want to get up and face the day as it is! So, yesterday was one of those days. Multiple times a day, for long periods. Children discomfited by their youngest sister, all trying to figure out how to “Stop her!” I had to try comfort her while telling her irritated older sister that she wasn’t doing it on purpose. I gave her pain meds, I gave her meds to stop stomach cramps. I wondered if it was the Ritalin causing it. Was it the side effect of stomach pain and nausea? Or headache? What if it’s pure emotion caused by it? Reddit threads are full of adults on Ritalin unable to regulate their emotion and suddenly crying and feeling extremely emotional.

This is what she did to her poor sister’s lip. Oh my word this life is soooo hectic. Speaking of my 11 year old. Poor girl has gained massive amounts of weight. She was so hungry she was waking in the middle of the night and making noise looking for food. I took her off her antipsychotic in case it was the cause. But then today her emotions were .. psychotic. She was crying for no reason. She was very angry. The very anger that had made us put her on the medicine. Irritable. And by this evening, she’d told me she wanted to kill her father – twice.

So, back to Abilify she went. I’ve emailed the paediatrician to see if there’s any other option. Risperidone gave her that horrible dystonia where she couldn’t control her muscles including her tongue. Shaking, head pulled down sideways, tongue out her mouth. It was awful. I don’t know what else can be done. But murder? Not an option!

I had given her screaming sister only half her Ritalin dose yesterday. But nope, the discomfort that she was feeling – physical or emotional- didn’t care about the reduction. She still screamed. One time she aimed for my eyes. It was terrifying having to quickly get jk before she tried again. Another time, she came and sat on me. Mainly on my right leg. And that weight, is what has killed my leg. Also, I changed her diaper too. Her father gone to Tokyo to go run a marathon, brother too sick to even count as existing when it comes to handling his siblings. Pain.

And so, today, I struggled. The pain, the weakness took me back to those times when I’d almost fall. I had to get my walking frame and use it.

Thankfully, it ended after three hours. By the time my talking twin wanted me to exercise with them, I could walk. And I could exercise with them just as she was about to start crying because her older sister was telling her they don’t need me. Needed. For comfort and for exercising.

They were eating avocado. Sister in pink told me she looked like she’s autistic because of the noise canceling headphones. She didn’t see the irony, given her sister is autistic!😅

Today? There’s been grunting that usually leads to the uncontrollable screaming but so far so good. I hope she stays stable. And I hope her 20 year old brother who had wanted to avoid the doctor, starts recovering. He’s been given steroids, antibiotics and other meds. “You were right, my sinuses are very inflamed.”

And oh I pray so hard that Sabbath won’t be as awful as last Sabbath.

Please hope so with me!

My positive of the day is again, how in love with learning her twin is.

Meanwhile, she leaves her poor siblings totally blank. The other day she felt we were leaving her out and came barging in telling her siblings that she learnt about Hasui Kawase who was Japanese and he did landscape paintings and cherry blossoms which were very beautiful and then his paintings were destroyed in an earthquake and then he died.😅🤣

She had already lost them at his name. They had no clue what landscape was…

And no interest in paintings and Japanese history.

When our Maths lesson ends, she asks if we can continue later. Thankfully for my body, her ADHD takes over in the afternoon and she forgets she’d wanted to continue with Maths.

And nope, the screaming has begun. Oh well…

Hey, at least she’s not screaming in her bedroom instead of sleeping. She ‘only’ screamed for about 10 minutes this time. It’s a semi win.😅

It hurts! Tightening/interlocking my locs hurts! Ribs, shoulders, the bones I use to sit…I want it over and done with but my day didn’t belong to me. The title was typed yesterday evening when my girl who had made me hurt myself badly by changing and dressing her in the morning, was still making me hurt myself in the evening by making me follow her to the garage and other places while I was trying to replace today’s burgers she’d found and eaten.😫

It’s 1am and I’m awake because a door leading outside suddenly swung open loudly and bashed against the wall, waking me. 😫

I want you to rescue me from my girl! When I try fill the pill boxes – her twin sister has also joined the pill box users now that the paed knows she can swallow tablets-she pulls my hand as I’m counting, opening the pill containers, and pulling tablets out the blister pack. It is frustrating. It means walking to where she’s pulling me to, extra standing and walking for longer than desired,and it hurts.🥹

But refusal will lead to a tantrum. She had a meltdown yesterday afternoon while her (their) aide was here. I felt so bad for him, he was hovering around so close to her and she was unable to regulate herself and nothing would calm her down. You could see his “How do we fix this?” nature coming out… Her rampage ended with a satisfying breaking of an unopened Purity baby food glass jar.😩

Rescue me from the insanity which is present daily and dysregulates every child.

Her twin and bigger sister also took me hostage in the evening! Wanted me to bake a cake. I obliged and got them to work with me so they feel like they were part of the process. It was nothing fancy. I ordered a gluten free cake mix pack because it’s cheaper than getting all the various ingredients separately. I looked forward to eating some. But a certain girl ate lots of it. And it wasn’t the six year old who had been begging me to buy a mix for them.🤦🏾‍♀️

The previous day, I’d wanted to tear my hair out! I need two avocados to make ice cream with. I had four in the fridge. They asked to have one and I agreed for them to have one. Next thing I knew, each had their own one and there was only one avocado left! But hey, they enjoyed working with their avocados and eating them!

My food thief talking about her autistic sister, “See!? It’s like she’s autistic. Wearing headphones…” Funny all the other stereotypes she doesn’t mention which also make her sister really seem autistic, like hand flapping. But it was cute because she found it cute that her baby sister felt she needed to wear them.

This photo below shows you another time I was captured by our roaming non speaker while busy! But to be fair, she had been miserable and we didn’t know why, so I took her and made her lie down on me and she took advantage of that. Going from sucking her thumb to manipulating the video all while not letting me get up. 😅

2:18am. I keep falling asleep and then something wakes me. That’s been the trend whether or not the children wake me in the night or not!

What I do also need rescuing from is her gifted sister who keeps asking for this and that every single day, many times a day. “She’s the smart one,” Amarissa says cheerfully after following her to my room as always. She finds it easy to say because she herself is creative. But regarding her brother about whom she asked, “What is Mickey’s strength?” I have no answer. Truth is, he is failing in every direction. Motor skills are stagnant. But I’ll see what his OT report says and see. But from what we see at home, he is not creative, not academic. Not able in a way that would see him in a specific direction in high school especilaly. Private special schools ask for his psych reports when I ask about space in their schools, and then keep silent when they’ve received them.

I need rescuing from stress and heartache.

I signed two of the children up for ‘schools for children with learning barriers’ through the government with the Paed despite the dad saying the schools aren’t good enough. Last I knew, waiting lists were two years long and that already is a long wait that just demoralises me. Then, last night I saw a post by a mother in my ‘district’ -we don’t have a special school in our district so we’d be sent to another- saying she’d been waiting for four years for her autistic son to be placed. He’s not coping in a mainstream school and is often called to go fetch her son by 9:00am. If even those already in the government system have waited this long, what hope is there for mine?

Rescue me from dejection. I was meant to have sent them all away two years ago already. I feel the pain when the day is done and I still have to plan lessons or find ways to try reinforce what the two aren’t understanding. Four more years of none of them going to school will kill me. I force myself to go plan based on their performance and how far they got during the day.

And so we come to me. Our non speaker has had bad days. Lots of screaming, crying, smashing of glass jars of food. I was never good at remembering my own medication as it is. Now with the increased anxiety and busy-ness, I go days without using my inhaler. My eldest has been in bed since Monday. Very, very unwell with bad fever, sore throat, abdominal pain and diarrhea. I’ve gone without using my nasal spray for too many days than I can even remember and now my sinuses are blocked. Forgot to put eye ointment in so my eyes are bad.

(It’s 1:33am the day after I started this post.) The headache, blocked nose, gritty eyes and need to brush my teeth can’t be ignored. I’ve just sprayed my nose and am hoping my throat is ‘just’ sore from the dryness and not from catching my boy’s bug. I had been going in an out with medication, liquids, honey etc and last night we just couldn’t handle his poor sister who had had a bad day anyway, so I called him to try.

Rescue me from neglecting myself.

And I will hope for your rescue from anything assailing you. 🙏🏾

The first opthalmologist I saw is a doddering old man who didn’t even know how to test my eyes for dryness and writes notes on a card as small as my hand. I didn’t think anything of it but the rheumatologist’s admin asked for a report. Which of course they’d not told me to get so I didn’t have one. I then made another appointment with the group that’s been-not very successfully treating my son- not successfully because there’s been no continuity in doctors on weekends and what the first doctor said he’d do is not what the second one did. And his eyes remain not great but they claim they know the reason why. So we wait and see what happens at his follow up appointment…

Back to this afternoon’s appointment. As soon as I mentioned dry mouth and throat and chest that hurts when I’m exercising or breathing in deeply, the female opthalmologist asked, “But why hasn’t your rheumatologist tested you for Sjögren’s? It might be negative and still be it, but it might be a positive test and then you’d know!?”

You tell me! It’s what I’d lamented to a friend earlier this week. They merely told me I don’t have lupus and then left it at that as if I’d even asked about lupus! In my reply, I told them I was wondering about Sjögren’s but man, that practice sucks when you’re not directly in front of the doctor. The very first time I mentioned my symptoms, I was told that Lyrica causes dry eyes. I told them I’m not using it! No acknowledgement.

After the first opthalmologist appointment and they’d asked for a report, I told them the doctor had taken down the list of meds I’m on to research if they could cause dry eyes. The admin said, I kid you not, “Yes. Lyrica and sleeping pills can cause dry eyes.”

I again told her I am not on Lyrica! Nor am I on sleeping pills! I took Lyrica for only one month last year! Haven’t had it for five months! I’m wondering about Sjögren’s.

No reply.

In the meantime, my eyes are both already damaged by the dryness and scratching. They’ve changed shape. They saw this via scans they take of your eyes. I’ve never had my eyes scanned before. I was extremely grateful I was there!

And there we go. While the rheumatologist’s team fob me off with telling me my problem is medication that I’m using, my eyes are damaged. We will check on their state in four months and if worse, make another plan besides the drops and ointments etc.

She gave me a pathology form to test for Sjögren’s and told me, like, seriously told me. So seriously so that she stopped typing and made eye contact with me when I didn’t agree with her, that my dear adoptees are blessed to have me.

I think because of how they behave and how no children’s home would be as kind, sending for so many assessments, aware of specific challenges, I agree. I mean, even some mothers have said they’d have never even thought of things like visual processing disorder, or dysgraphia or dyscalculia. My poor children would have been told they’re not concentrating or stupid…

But I too am blessed. They are teaching me how to love as Christ loved me. I knew Him, so I thought. I thought I was showing Him how much I loved Him. But as knowledge increases I realise I was a big disappointment despite how well meaning I was, yet He never gave up on me but kept wooing me. And so even as I deal with unpalatable things like one smearing bodily fluids on walls while ever repeating how much they love me, I grit my teeth, dispense discipline, ask the child to think about the purpose of things before they act, but also know through research that it is sadly quite normal for children and adults with her condition. And so, I extend grace. Forgiveness. “Forgive her, Father. For she knows not what she does.”

My girl told the psychologist that I gave her the best gift ever. When she’s feeling sad or angry or overwhelmed or like she wants to disappear, she goes and folds herself in the blanket I gave her that promised her she would forever be my little girl no matter how old she’d grow.

She loves me as imperfectly as I love God. I meant it when I said it but my actions don’t match. Not yet. Step by step. I will give her the same patience and understanding I received when I would step forward then fall backwards before stepping forwards again. If He loves children, how much more does He love children with additional needs?

We are all privileged to have each other.

Tonight as my girl watched me cooking peas for them, she told me she worried about me because she didn’t know how I kept going. I’d made them a pineapple smoothie, continued cooking, tidied up and still was standing preparing their food for tomorrow. She saw me.

I will also have ongoing glaucoma tests as it is highly heritable and my mother had it. So far, THAT test was great. We have a baseline for the coming years.

And that, my friends, is that. Out with the old ( doctor) and in with the new. My sight depends on it.

I suspect my non speaker is having a very hard time when her Ritalin LA wears off. Why is it in the evenings that she goes crazy? Violent, angry, screaming and full of tears and snot? It’s awful. Loud. Traumatic. And the constant hum of anxiety I have becomes a loud roar of helplessness and sadness for her and for us.

It’s not ok that you can say your afternoon was “better” because the screaming didn’t last “as long as the day before.” It’s not great that “at least none of my hair was ripped out today.” No. It’s messed up. And in the aftermath, you can’t see how terrible the storm was. Just like before, you couldn’t predict that there would be a storm.

And man, there are many storms.

This was her in the morning. Just suddenly started working on an Afrikaans body part puzzle and did it perfectly! And because she’s so quiet, you don’t even realise she’s ‘busy’ till you really look at her. But with two other very loud children, it took us all a while to realise.🥰

And a bit later on too.

But that same day, we had over an hour of screaming. She spat out any and all medicine even when we thought she’d calmed down enough. She spat out her sleep medicine. Spat out everything that would calm her and threw things down that she herself would call for, like juice. It was prolonged torture and she ripped my hair and finally got two pieces.

Yesterday also began fine.

I was accompanying her into the car where she likes just sitting sometimes, and she said, “Garses!” so I lent them to her.

But the storm this little work out, just basically doing a squat over a chair, and then a very mild ten minute children’s work out has brought me excruciating pain that made itself felt at 2am when my dear 11 year old girl started bashing around the house and banging her door. It’s 3:35am and I’ve just gone to tell her to stop making noise and sleep. But she’s just made more noise as I type. The pain in my side, my hip, is horrendous. It’s a combo of joint and muscle pain. I’ve taken my pain tablets for muscle pain and will see! As my friend said, it’s not cool that the very thing you’re trying to do to reduce the effect of AS on your body, causes AS to strangle you and cause you so much suffering.

This just looks like a car door. Nobody would know it’s the aftermath of the evening’s screaming attack where she undid her seatbelt when we’d hoped going for a drive would calm her but if not, would save the others from the noise. You don’t see the food she threw down. You don’t hear the screams that drove her siblings away from the area she was in.

You also don’t realise that this laughter in a bedroom is not the norm. They’re usually together in the sitting room. But she’d been screaming too much so they went elsewhere and isolated themselves.

The aftermath is calm and quiet.

You don’t realize that my hair is up on my head so my girl can’t grab it and when it’s hanging down my back and break more of it.

But the trauma and physical pain on all of us of all these conditions combined can’t be erased.

And this trauma reminds me of something I was trying to tell a friend and of a reason why I agreed with another friend that I’m in danger.

There are times the man who pretended to marry me is so cold that I fear for my life. I once thought he’d ram the car into me. He got in with this very cold dark look on his face where he couldn’t hide his hatred. I had asked why he was so cruel and cold that day. He just asked what it had to do with me. Another time was when I asked if he’s still in his ego relationship with his ho. When you’re happy in sin, you don’t like reminders that your actions will come back to you in a whirlwind. You feel attacked instead of prompted to change.

I am truly afraid of him and I have reason to be. He had two weeks of unbridled cruelty unleashed against my two oldest. It was a few years ago. I didn’t even know how to protect the children because I didn’t know when his fury would come out. One time we ate just standing in the kitchen and my oldest son says something really ridiculous and he whacked him HARD on his skull. My son gave this God awful yell and he screamed that he couldn’t see. He couldn’t see. I’m still traumatised. His vision was distorted for a whole day after that. I was so scared he’d never be ok.

Another time, he took them to the garage and whipped them with a chain. I was keeping the others away and he was talking like a robots the robot he looks like when it’s like he’s contemplating smashing into me as I stand in front of the car. “You must respect me. Who..do..you..think..you..are?”

And that’s been a cry he’s aimed at me for years now. In 2016 when I asked what he thought his God would have done with him if he’d died in his cheating, he told me I was being disrespectful. Another time, I asked if he didn’t see the irony of how if he’d died, people would have claimed he’s such a food family man yet a stranger would have known he’s not at all family oriented. He again accused me of being disrespectful. I asked him how long this stupid relationship would have gone on for. He told me he had no reason to be interrogated by me.

And so, when out of the blue he suddenly attacked our first daughter, causing her to fall together with a wooden chair, bursting a blood vessel in her eye, I was as shocked as she was. He had never been violent before. It was the most painful thing to hear people asking my child what happened to her eye.

Each time, I told him he had damaged my children. This was how he was raised by his mommy who he worships. All his siblings and he himself attest to how cruel she was. He’s told me multiple times of the weapons she used on them. I heard her myself beating her 19 year old (The one she had with her married lover. It runs in the family. Evil and adultery. All of them. Father included) when I lived with them in the UK. And then she’s surprised she had to call the police once when he then grabbed her by the neck to stop her?

Yet hey, he told me I’m a bad mother. “You should be like my mother instead of laughing with them so much.”

Says a lot about what bothers him. Our happiness. And someone who hates you being happy is someone who hates you.

The aftermath of abusing your daughter, son and wife, is a daughter who bears trauma and is determined to never allow herself to live a fake life. I guess this is why she makes herself so available to other hurting girls. Girls who say she’s the only reason they haven’t killed themselves. Girls whose parents are just as cruel as her father.

And so, when a man who said he admires my husband wrote to ask me to meet with him, his wife and others and the father of my children, I refused. I was mistreated last time that happened. By both husband and him and another elder. All of them demanding that I act unhurt and as if I’m loved.

Nope. The aftermath of their furthered abuse is a stronger woman who bows to no man who isn’t a man indeed.

But that places me in danger. He never again did act violent. But a man who can give tens of thousands to a ho has no morals nor integrity and is capable of anything. Anything to free him to enjoy someone who doesn’t expect him to be anything with standards but just a sugar daddy.

The wounds on my heart are invisible. The pain mommy body makes my daughter ask how I can smile when underneath my skin is torture. The same reason I smile despite being trapped with a cruel man who never had any intention of ever keeping his vows. Why propose when you don’t propose to be a husband? Why not just live as an immoral bachelor?

It’s 4:08am and the pain is reduced a bit.

So, I end with the few light moments of yesterday. I had a few.

Ms Naynay was telling her ten year old brother about how she’s almost finished her current grade which she began six months ago(!) and is “going to start a NEW grade! Look, here are my books! Here’s my Maths! It’s so exciting!”🥰🥰🥰

It’s her still telling me often that she loves school and is so thankful I’m teaching her “all these things.”

You can’t see clearly but those little bits of light are something she got out of bed to come get me out of bed for last night. “You need to come see something!” Ok, ma’am!

Their planet floor puzzle glows in the dark.

It’s in how this one RUNS to the TV when certain songs play. This is a sensory delight for her!

It’s also in how my Amarissa made sure to cement what I said to the psychologist who will be assessing her about her low cognitive and basically ALL abilities are at a much younger age so she relates very well to her six year old sister.

She took her tablet for her session so she could show the psychologist a photo of her sister. I knew it would make a definite impact given how I’d emphasized their bond.

It’s in how my first born is worried that his very long day at uni today will mean I’m alone with a little sister who is going crazy and is wondering if he can do that class online at home so he can help me out with his little sister.🥹

How did I get such thoughtful children who have so much love to give in their very different ways?

I hope so hard, that I’ll be able to protect them from as much damage as I can.

(Can’t edit. It takes a lot to try be happy when your pain isn’t going and the day is coming but you’ve not slept well in way too long. Excuse the typos!)

First Part Typed Saturday Night

It was just lunges. That’s all I did before I ran out of breath and couldn’t continue exercising. Never in my life have I huffed and puffed during lunges. And I was only holding 3kg dumbbells.

It is frightening.

I even used my inhaler. But my lungs are still sore and I still can’t breathe well yet I’m sitting down. For months now, I’ve only been able to do six lunges per side. I have to strengthen my muscles. Not only because it’s necessary post menopause anyway as we lose muscle. But also because our AS bones need our muscles to not die while our skeleton does. Our bodies need all the support they can get.

But my lungs don’t want to play ball. I’ve slowly been noticing that my normal isn’t actually normal. The breathlessness I’ve experienced in the past few weeks that leaves me unable to finish a sentence or even a word isn’t temporary. This might be the best I can be. And that’s terrifying. Until my lung function test, I’d been ignoring the sudden inability to finish my words or run out of air at the last word. But yesterday I couldn’t.

I have a Bible story channel for children. It’s low stimulation, slow and steady for neurodiverse children like mine, but there’s an older girl at church who wanted me to never stop. I make up tunes for new Bible verses and yesterday, I couldn’t use the tune and beat I planned because I ran out of air before the first LINE. One little line defeated me. So I slowed it down so I could breathe halfway.

This cannot be happening. This cannot be my life. Rinvoq is finally helping my AS but my lungs, which the pulmonologist had assumed would also play ball when the AS slowed down, instead sped up. Oh, I didn’t blog that part, did I?

I went for my lung check and yikes, for example. My lung diffusion capacity had been at 17 which was slightly reduced. And then the following year it went down to 16. But now suddenly it jumped down to 13- “severely impaired ability for the body to pass oxygen from the mungs to the bloodstream.” I can’t recall the other value that also went down. But it also went down quite steeply. He didn’t give me the values.

So there we are. My lungs are misbehaving. I emailed the pulmonologist today. I asked if there’s anything we can do to ameliorate the impact of the progression or I should deal with the shorter breath. It’s only when I’m doing prolonged talking. Like when describing what a child did during a normal conversation. For children’s videos and adult videos, I talk deliberately slower, so it’s not pronounced.

I did ten lunges before I ran out of breath. Instead of celebrating that, I’m lying on my bed so the rib pain, a dizzy head and worry. And yes, I exacerbated my bone pain but that was a small price to pay.

I cannot believe this is happening. I thought my numbers would be higher! I imagined him telling me I’m now normal! At least stable! I keep thinking it’s temporary. A sharp decrease isn’t a sign of something temporary, is it?

And the worst part? My lungs remained painful throughout the rest of the appointment after my lung function tests. That had never happened before! Never! Progressing is not a good word when it refers to how a disease is moving.

Sunday afternoon now…

I had a look at my dear Amarissa’s OT report. I’d asked for them all to be assessed as the OTs had not given me any inkling on what they’re working on and I need to know what I’m paying for! I figured if they assess, they themselves have clear guidelines and know exactly what areas they should work on.

Hers was the first to come in. It is painful as a mother, to see your child sliding backwards in some respects. How does that even happen?? Why? Is it a permanent regression? And what about the ones where she didn’t improve at all? Thankfully she has improved in some areas, but only by the number of years that have passed since the most recent assessment. So when she was bine years old, she was testing at a six year level and now (for some) she’s at an eight year old level at age 11 years.

I just found myself so overwhelmed. Why does this mean? Her visual processing is as bad as it was three years ago. NO IMPROVEMENT! What is the point of ‘therapy’ when it’s not showing that it’s therapeutic? Why pay the fees and the fuel? And if she’s got so many foundational skills not where they should be, why continue with academics? Should I halt it and only focus on fine motor skills, strengthening her trunk and fingers? Should I only focus on executive functioning skills like thinking and planning? Should I only use my textbooks and forget about her textbooks? But then if I do? Her Maths and reading deficits will continue to be stagnant. But they can’t improve if she can’t see clearly anyway!

I feel stumped and sad. She can’t recall suffixes and prefixes.. the terms mean even with words that contain different types. Yet we’ve done them for a long time. And contractions. Should I even bother with that given we already know from her psych report that she will never be academic? I don’t know any factory workers who need to know grammatical contractions. Should I dump grammar completely and only focus on literature and the sciences and practical skills?

My mind goes round and round all on my own. It’s so heavy. I don’t want to shortchange her. But I don’t want to cause a breakdown over something she won’t need for whatever vocational stream she joins. But what are the options??

And that’s the other problem. I can’t find any vocational high schools that suit her. No neurodiversity profession can think of any except some high school that does more dancing and acting than what I’m thinking of, which is, building practical skills for a job one day.

And today, she’s having a very bad day which means I’m sucked into a dark malaise with her. An all day tantrum and the day is not over yet. I am worn out. How can I help my poor daughter? She is miserable, I am tired. My head is aching. My eyes are too dry for my contacts but my glasses are sliding down my face from the sweat (It’s hot)

I wish I could fix all the parts that make all my children struggle and suffer. I wish I could fix my own skeletal system and muscles and organs. I can’t and so I continue having our 11 year old assessed. This week she will be seen for an hour, and then I will meet a record four to five hours to answer questions that assess if she does have autism and PDA.

Then we discuss how to help her pharmacologically with her PMDD symptoms.

Hmmm! I don’t even know what I’m praying for anymore when it comes to myself and my children. I can hear my non speaker building up to a huge meltdown as I type. I just keep asking God to help me. And so far, I haven’t died. I haven’t had a paralysis stroke. No heart attack. So I guess He’s helping me.😅