Author: Grace by any other name

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I will not keep quiet.

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

The saying does not apply today.

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

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

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

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

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

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

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

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

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

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

Wow! She’s so clever!

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

“Her children arise and call her blessed.”

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

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

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

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

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

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

I hate Ankylosing spondylitis.

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

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

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

Now before the church visit…

(How I was dressed)

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

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

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

It was funny and cool.

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

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

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

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

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

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

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

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

Additional needs.

And I’m the parent and teacher this time.

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

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

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

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

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

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

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

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

But also typical phomeschool needs. School and crafts.

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

And she nailed it.

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

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

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

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

The power of a pill

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

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

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

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

That’s crazy.

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

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

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

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

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

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

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

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

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

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

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

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

Dolphin isn’t dolphin.

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

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

I hate autism.

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

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

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

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

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

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

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

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

But she didn’t.

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

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

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

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

So, Lentegeur is a psych hospital.

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

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

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

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

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

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

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

BUT I am thankful for lovely nurses this time.

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

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

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

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

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

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

And it will be our downfall.

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

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