I’ve planned and prepared Micaiah’s Maths and Language lessons for tomorrow and JUST realised that once again, I put the wrong date for tomorrow’s Maths.🤦🏾♀️ Mow just for the two girls and school prep for tomorrow will be done.
But how about today?
This girl jumps around like ANYTHING! So all my photos are blurred. She had asked for wafer biscuits. Let’s take a detour down a well known path if you’re a regular here. Her twin eats a lot. Her appetite was always large but the anti psychotic makes it worse. At the same time, part of all their sensory diet is to have crunchy things or cold things … So when Twin B asks for “ yor-gurt” or “cookie,” then Twin A also wants something to eat. This has meant that we get as much sugar-free as possible. Today’s request by Naynay (Twin A) was wafers. But she hadn’t finished her breakfast. When I was done with teaching her for the morning, I told her she could have a wafer after she finished her food. Off she went to go eat at the dining room table while I got ready.
Just as I started teaching her sister, she came running back to the room, telling me she had finished her food and I had to go and SEE HER PLATE! Why?? I believed she’d finished! I really didn’t need to go see. 😆But, I went anyway As I turned the corner, she told me it was a “surprise” so I should close my eyes. She exclaimed, “ Ta daa!!” and I allowed her to “ surprise” me with a plate she’d already told me was empty! Parenting is crazy!
And what about school itself? She didn’t want to read this book. Why not? She felt the girl in the wheelchair would make her cry because she felt so sad for her! Tell me autistics don’t have emotions! I’ve seen adult autistics who say they sometimes SEEM shut down but that’s because they have too much emotion and are trying to control it. That is Naynay to a tee! She feels strongly! Did I tell you about the time her twin was upset and crying? She couldn’t urinate though she needed the toilet badly because she was “ so worried” about her sister!
She has a heart! She even gave me a hug when I helped her ‘sore finger’ feel better by putting a plaster on it and told me I’m a great doctor!🥰Lack of ‘feelings’ is not universal and I don’t even know if it’s even common for autistics like they claim it is!
But she read the book! I told her the girl would not be sad and I prayed I was telling the truth!
Whew!
Nobody who “looks like a princess” will make you cry.
This was a bit of our Maths with her older sister. It just occurred to me as I typed this that I share a lot of what dyscalculia and dysgraphia are like on my YouTube channel but not here. This is dyscalculia in action and this while using the curriculum designed for children with dyscalculia. I am VERY sure that many children are being overlooked and being forced to fail maths because nobody in their space realises there’s a condition like this. I wonder how many have been called stupid or told they aren’t focusing.
For the afternoon, I set up Khan Academy assignments for them.
Naynay had some b vs d issues in the morning when typing words so I made her practice – hence the second assignment in the list.
Lowercase E is a difficult letter so I got him to practice seeing it and tracing it with his finger.
Little Miss Ammy has trouble writing all letters in lower case so today was her e day too. As you can see, her ADHD doesn’t let her focus as well as the others can and she didn’t even try the reading ‘monitoring’ assignment. So I’ll make her do it in the morning with her meds still fresh.
And that, folk, was a very quick glimpse of our school day. I also created a new Afrikaans learning video for them which I’ll play for them tomorrow.
Warning- I have fellow autoimmune inflammatory arthritis followers so I am very real about what active Ankylosing spondylitis is like for people like me who aren’t responding to treatment. I will include nipples.
She has absolutely NO idea how this long running conversation of many topics has been a help. Because it’s through WhatsApp, I can do other things while still taking a chance to steal a glance and reply. And with the level of pain I’m in, the distraction has been perfect. I’m unable to lie down and rest because of parenting duties, so she’s seeing me through the suffering. If I’m in bed and the pain is this bad, I can’t even try converse because I feel so alone in the war that the other doesn’t realise or can’t imagine. But like this when I have no choice but to keep smiling and guiding and leading… I need the distraction.
It’s mental too. My daughters change their clothes multiple times a day. I had tried to keep their clothes in my wardrobe but I don’t have space. I have quite a few outfits like this- three are thick dresses/robes like this below, and four are onesies. Worn because skirts hurt. And with thick material, you can’t see nipples from a body that can’t wear a painful bra. I mention this because it sometimes comes up in AS groups, women asking if it’s just them who can’t handle clothes and bras. Some don’t wear bras at all. Some stay in their nighties all day… All because of the pain..
That means my own wardrobe space is filled with warm hoodies, normal clothes, and these space stealing style clothes. So I took some out and put them back in their wardrobes. Which then results in this.
I just want to cry. I hate mess. I can’t bend down to pick it up. I got a third of the room done via directing the owner of this shared bedroom and then went to see how much I could get if the other one whose owner was too sleepy and angry to be of much help. See those pink fleece tops by the bed? I reminded my girl to hang clothes, put others in the drawer.
Yeah, that’s not a drawer. It’s all day, every day, it’s draining and frustrating. And I’m tired, readers. I’m so tired of being single mom. Last Sabbath, there was someone constantly coming in so so often that I ended up texting their dad about how Andrew Yates was found guilty of killing her five children by reason of insanity and so avoided the electric chair. I told him that one of the things her defense pointed out was that she “only got two hours a week away from her husband and children.” I pointed out that I get no time away and she was healthy. And I added that I can fully understand the South African doctor who forgave his wife for killing their autistic children when they moved to New Zealand and she was alone with them.
He got the message and told them to sit down and stop bothering me. It should not need to go that far. Surely if people know we are constantly bombarded every day, they should automatically give you a break on a weekend? But anyway, it was a warning that this was unbearable, not that I was about to harm the children. because if anyone would die, it would be me. They deserve life. I’m the one who is stressed and sick. So I don’t understand killing the children. It’s selfish – in MY eyes. I’m the one with the problems, not THEM. Why should I get to enjoy life while little children lose theirs at my hands? Even during the worst of postnatal depression, my wish for someone to randomly come and adopt them, or for them to suddenly be taken into a wonderful baby care facility. Never for them not live. I don’t understand it. But anyway, that’s how it is. Constant drip drip of torture. Yesterday afternoon, my five year old came to the room barely 4 minutes after she’d already come and I’d given them activities to keep them busy, and I exclaimed, “Please, please don’t say anything. Give me one minute. Just one minute, then you can come back.”
She didn’t come back right then. She told her ten year old sister, “Mommy is begging for one minute to rest.” So big sister wisely told her not to come at all because what was the reason she was coming? To ask me to buy them a ballerina dress each. Definitely not something that would exactly make me rejoice! (What they don’t know is that I’d already ordered ballerina dresses and they’re on their way.)
Yesterday I realised that unlike a school teacher, I don’t get break times in the staff room. I’m with the pupils all day every day. I don’t get a drive home like my husband does, who then listens to an audiobook and basically ‘relaxes’ on the way home, leaving the work environment. We live work. There’s no holiday or sick leave.
My shoulder. My thumbs. My leg. My shoulder felt more pain just stirring a child’s bowl of maize porridge. Just doing that. That’s the pain the WhatsApp conversation distracts me from. The back. The hip. The SI joint. The heartache and loneliness.
You can’t feel lonely when you’re alternately laughing and being serious.
So next time your sick friend seems very amenable to chatting, even if there might be long pauses while they feed or medicate or remonstrate or hug a child, please do chat if you can. You have no idea the blessing your conversation might be to them. I crave adult conversation and I’m thankful. Yesterday, as my son ate a clementine, he – who knows full well that we believe God made fruit and fruit trees- asked me how people opened up the peels to glue the wedges together.
That’s the level of conversation I have sometimes. The adult conversation is a blessing. Think about THAT too if you’re chatting to a sick mother who is a shut in. Not all husbands ask about the children. Not all husbands ask about progress with spelling or even know the resources being used to help the children. Some husbands seem to exist only to tell their wives about THEIR work. You sincerely might be the only one who cares and knows and gets frustrated about occupational therapists. A story for another day. If she’s chatting, she might be chatting not only because she loves you, but because she needs you.
Above is my newest bottle of Rinvoq tablets and my recent exercise purchase. For inner thigh and ski movement. God has given me many “No” answers since 2012. And one recent “No” was about my health when I go see the rheumatologist. I’d told my friend that I prayed I’d not have an infection when I see her, so we know for sure how the Rinvoq is working out. Instead, I couldn’t even answer the Rinvoq nurse properly because of the “No.”
The nurse texted me yesterday to ask if the request by the Dr for more Rinvoq and the approval for the extra funding meant it was working well, I had to tell her that we had no idea. My peripheral joints are better but my back is worrying. And thanks to an infection, we don’t know if the high numbers are because the Rinvoq isn’t working so my body is getting worse, or if it was the infection. We will try in December.
I hate not being able to control this stuff! Bladder and then abscess in my groin. I have masked up faithfully and avoided upper respiratory infections. But these other words random ones the very treatment itself is stopping my immune system from fighting off… No control.
And with that. We’ve come to August 2025 and I still can’t go to church. I still can’t go on outings with the children without suffering later. I still can’t exercise. I still can’t lose weight.
But
I’ve managed to maintain the weight even though the walking and exercise have decreased dramatically. I’ve managed to add more ‘stuff’ to just add in between school and refereeing fights and being dragged around by my non speaker.
Rebounder. Jumping on a springy surface means I don’t hurt myself as much. Though I still can’t do much as jolting my back hurts.
Around my ankles, ankle weights. Also to help boost my virtually nonexistent fitness. Staying steady is good. I’ve seen the ladies desperate for mountjaro and wegovy in my groups. I don’t qualify. I’m not fat enough. I hate the extra 20kg menopause and sickness brought. I laugh at how in 2019 before the twins were conceived, I was hating weighing in the 60’s and was losing weight till they came along.
But I’m thankful it’s not getting WORSE.
I can’t do everything i want to do with my children, but I am enough. Above is my ten year old. And below is my five year old’s thoughts. My son hand wrote a letter that I couldn’t read. I hugged him and thanked him. Poor baby.
I am thankful for the hearts my children have. The middle two found out today that their little sister can recite my telephone number. Something I ended up giving up on with them. Their dyscalculia does not allow them to retain a long line of numbers. But, they were impressed with their little sister for being able to rattle it off! Micaiah even said. “She’s the cleverest sister in my whole world!”😆And his older sister didn’t even get jealous. She was proud of her little sister.❤️
Shabbat shalom guys. I’ve sadly been awake since 22:30 when my ten year old was noisy. It’s now 1:07am. I’m tired and sore and it’s too early to take pain meds.
Creating “awareness” is so that people who might suffer the same condition know where to get help, and to educate others not to expect the impossible from you, now that they know what you’re fighting against.
Do others “create awareness” for the rest of their lives or do they ever sit down and say they’ve done their part?
I was diagnosed in 2023. I think know it’s time I retire. It was so major, having a name for symptoms that started in childhood and just got worse and worse. More importantly, it was a disease I’d never heard of. So I knew most of my people didn’t know of it either. If it had been common, I’d not have even begun with “awareness.” Those who are in my world don’t have AS nor its symptoms. And too many of those who are in my world find it very hard to be empathetic. To put themselves in my shoes. You’ll find an asinine comment like the following after I celebrated being able to work till later than normal, “Don’t forget, we also get tired.”
Ma’am, we’re fighting inflammation. We are always tired. We don’t get tired, we just get WORSE as the hours pass. And we’re fighting constant pain and stiffness in large bones. We’re fighting the conditions the disease has caused too. It’s very different to a very healthy person with only one child. If you can’t extend mercy and understanding, then awareness has not worked. You’re still unaware.
And so, my awareness campaign has stopped. It’s now left to those who ask specific questions to be aware and to leave me happily aware that the ‘campaign’ made a difference. One even remembered I am also fighting too, too early menopause yesterday!! That meant so much to me! That’s when I realised I could truly hang up my gloves. Those whose hearts are big enough, have retained all the information. I can count them on one hand, but .. there are people I can count! Some literally have NOBODY at all in their personal lives. I have some who check on me and remember what AS and other conditions do to me! Even when I’ve been silent for months about it.
My awareness creation has ended with the awareness that I am in some people’s minds. They’re aware. And they care. I am GRATEFUL.
What was the trigger for this post? This random image above that appeared on my wall, by Positively Rheumatoid. Fighting my pain and fatigue all day, every day, is part of my life; pretending all day that I’m not getting WORSE as the hours pass. I used to post when things changed, when I’d seen the rheumatologist… But one day when I celebrated working too much and for too long in the night, a very healthy person with only one child shared that they had done the same. It’s NOT the same. If they’d been aware, they’d have never compared their healthy body working late, with mine, which suffered badly the following day. Someone telling you with fatigue as a huge burden you and your pain are constantly fighting that “we also get tired” shows they understood nothing of the things they were to be aware of. Instead of celebrating that for once I was a bit more normal, they think it’s nothing. Purely because it’s nothing for them with their healthy bodies. Also because they didn’t gain from the awareness shared, what an inflammatory autoimmune disease is. And so, they helped shape future AS posts. And this blog helped too. And more the two sisters who ask the specifics are enough.
I’m in a global village and I’m thankful. I can also come across people far away who understand each symptom because they are living it. Again… I’m grateful.❤️
These days, just taking a shower and getting dressed hurt a lot and leave me tired. Doing extra is… Extra. Cooking is hard. Even years ago I used to wish I had a chef to come cook for everyone. If I did, there’d be food for me too. By the time I am done cooking a foods (like the Fry’s veggie sausages I’m busy with), I’m too tired, too in pain to take care of myself.
Remember how just hanging one hanger in the wardrobe hurts my shoulder? Mixing up a pot of sweet potato, carrots and pumpkin hurt a lot too. Something so simple! I stood at the stove and wanted to quit.
But I couldn’t. The family had to eat. So I cooked a bit. Taught a bit, did hair a bit…
Then Amarissa came in and saw me cooking.
“You STILL have energy to COOK!??” She asked, aghast. She told me to go rest. I told her I couldn’t. I had to hang the laundry, supervise them, referee their fights, deal with our very irritable nonsense-verbal girl, medicate and feed them..and cook. I have no choice.
Then she said, “I hate your life. It’s not nice always bein’” (using her words) “in pain and not resting. It’s not fair. How about I cook?”
Now this is a girl who can’t even make a cup of tea.🤣So I kindly turned the offer down and told her she was about to go play so she mustn’t stress about me.
And so I have a question for the social worker who reprimanded me for getting in touch with her biological mother all those years ago. The social worker who told me that now my child would be “confused” about who her mother is.
The girl even met her BIRTH SISTER! And then that was it. After a week it was like brith sister didn’t exist anymore. She worried brith mom was dead because of her continued silence, but that’s it. It’s “Aunty P, the lady who gave birth to me.” I am Mommy.
I can show her all the hugs she gives as she calls me, “ My Mommy,” all the little notes “You and Me.”
My girl is very secure in whose she is. She has only one mommy. She only talks about her one mommy. She is..surprise surprise… Fine. Imagine that. An adoptee who knows who her mommy is!
Before we adopted, I read research stating how the adoptees who knew everything were able to assimilate all their feelings about being adopted better than where there was secrecy and denial of their past.
I’d rather deal with conversations about what is known, than heartache about what is not known.
On Friday, my dear five year old asked for a noodle tofu meal from Simply Asia. I decided to treat their sister in Pretoria as well so that she keeps her grocery and personal money for other stuff. Plus… This is me. I can’t buy a treat for only five out of six children anyway.
It was already too close to sunset by the time I’d organised everyone else’s food, pyjamas, early evening meds, so we agreed with my oldest to buy her her meal on Sunday.
Sunday came and she gave me a time. I told her I’d order at 1pm so it would be there by her preferred time.
One o’clock passed. Our non-verbal angel has had bad moments since the start of the weekend. It’s been getting worse every afternoon. (Yesterday afternoon it just built up so badly that I asked for a dentist appointment for her for when her father can take her, and hoped for the best. The dates are far away but there’s no way I can safely take her and carry her while they TRY get her mouth open. Even we can’t, but we need to figure out a way. So I found a dentist advertised as autism friendly and set it out in an email. But that doesn’t solve NOW. Last time I took her to a paed there as nothing to see). Anyway…
I got busy with laundry, with the children, my bones were angry and just became angrier as the day went on but there was no chance to rest and the children needed a lot of supervising and I honestly just wanted to cry..and so I forgot until an hour PAST when I said I would order.
It would be “unlike” me not to keep my word to her.
I have a lot to live up to despite the stupid brain fog the AS also comes with. Ammy again said yesterday that I’m “more” Christian than her dad. I can’t go backwards now.
I’m lying here as I type, fingers cold and sore, and wishing and needing to lie here all day. My tendons and ligaments in my pelvis are inflamed along with my terribly aching bones, so each movement of my leg feels like a tendon is going to snap. It’s sore! But my mind can be at peace.
While I am alive, the children have a mother they can rely on.
Something I never had.
We often want to give them material things we didn’t have. But thanks to my upbringing, I have a lot of other things to give that are FREE (except the food itself, hehe)
Random side note. When my oldest girl told the white lady who owns the ironing place, that she was going to Pretoria, the woman told her not to dare get an Afrikaner boyfriend.
Recently, I had to collect ironing and the woman came out and while laughing, asked, “Did your daughter tell you? I told her she’d better not come back with a white Afrikaner boyfriend!”
Do you know how expensive dark chocolate is? Did you know that dark chocolate has anti inflammatory properties? Do you know how expensive it is??
I’ve been eating a bit each day. On the day I got back from the rheumatologist, I went into the room and then left it unlocked. I went back in and noticed pieces of dark brown on the floor but it didn’t compute till the next day. I thought maybe Reo had eaten a sugar-free cookie in my room.
Then, the next morning while I was medicating Little Miss Reo, and sorting food out for the little ones, I realised Ammy was gone and had been gone for a while. I became suspicious. The recent rule is that they do NOT enter my room at ALL and if they want something from my room, they must ask me to get it for them. But I’d forgotten to lock the door..again.
I crept to the bedroom. She was taking way too long for someone who was apparently just taking all their (Samsung) tablets out the room where we keep them. Indeed, as I walked in, she came from the side where my bed is with something clutched in her palm, and also chewing.
I made her open up her hand and it was my chocolate. I don’t know if I can ever get used to the disappointment. Will j ever not be surprised or sad? We teach our children right vs wrong. I live the right example for them. But like Eve and the serpent, my voice of reason is drowned out by ADHD impulsivity and inability to analyze actions and consequences. It’s not the wasted money. It’s the fact that while I broke my body cooking yummy food that I can’t eat because I’m intolerant to it, they /she can eat it, and then go take what is not hers. Stealing. Every day, something gets stolen. I don’t realise until I need it. Or when I find it where it should not be. Even unopened packages are opened and torn apart. Nothing is safe. That’s why I lock my bedroom. Even when using the loo, I lock because they creep in. Well, I try to. But it’s not normal or reflexive to lock your bedroom door when you go cook or when you go pack laundry etc.
I get hungry. The silly Amytripiline has increased my appetite This time I wasn’t just hungry, I HAD to eat something substantial before taking my antibiotics. I went to the kitchen cupboard and there we go. Two gluten-free rolls gone. Eaten by one girl who can eat wheat rolls, of which we had many. Do you know how expensive gluten-free rolls are? See a trend?
I had grapes. I had crackers. There was NOTHING else that was safe for me to eat that day. The bananas were still green. I couldn’t make food for them then prepare frozen veg for myself. I needed it immediately so I could take my tablets and medicate and teach and plan.
Compound this with constant lying, and you have a constantly heartbroken mom. Many parent report the lies and negative behaviour but you keep assuming your children will act differently. You don’t spend the day thinking, “Brace yourself, you’re about to hear a lie.” And also, I can’t predict where the next onslaught will come from. I can’t prepare my heart. I can’t prepare my stomach. I can’t shield myself.
School equipment. Books. Anything and everything. Sugar that Vi uses. It’s ongoing. Relentless. Constant.
Disappointed. Constantly disappointed.
I think of my child’s biological mother who when we were searching for her, was found to have a criminal record by an ex police officer we first tried. After finding her and cajoling her for years to tell me WHY she had a criminal record, she finally told me. She and a friend decided to go break into a the friend’s ex’s house and trash the place. Breaking and entering. Malicious damage to property. Criminal record due to impulsive behaviour.
There’s always been the background cry about how many prisoners have special needs.
If you can constantly steal from your parent, what stops you stealing from a stranger? Or breaking and entering? Or trashing someone’s house?
I don’t know, reader. I pray God will form a hedge around my children, especially my ringleader child. I pray the disappointment I’m constantly feeling now will not be felt forever. She has so much to give to the world. So much love, creativity and loyalty. I pray those strengths increase and the negatives decrease.
This letter was during the week.
I’ve just had to dispense another, “I forgive you,” hug just now. It’s ongoing. The disobedience, defiance. We have many I’m sorry moments and many I forgive you moments. We have agreed that tomorrow will be a new week and we will forget – till it happens again – all the waste of misused hair spray and stolen food and slavery. (Bossing her brother around while not letting him play with them.)
Impulsivity has many ways of manifesting itself. I’m so tired of people minimising ADHD that I’ve added yet another person to my list of people I reply with a, “Casual, ‘we are fine’ answer because they never seem to get it when they ask what the children are up to then reply with a “My child is like that too” retort.
Example. They saw a photo of my child walking on a wall.
They commented how their child who is HALF her age, ALSO climbs. I responded, “Man, she hurts herself when she is climbing. I hope yours stops hurting themselves soon because it’s really stressful not knowing if you’re ignoring a serious injury or not.” I knew full well that their child is very likely NOT getting down dangerously. And indeed, as I KNEW, the person responded, “No, this one never gets hurt. Ammy must just learn how to get down safely. My child is so different to their peers. They like ladybirds and all the other children are scared of them.”
Guys, my child is different to other children because she eats pencil crayons, erasers, rubber bands, picks at her hair and makes it severely untidy, chews her blanket day and night, and still has no bladder control – day and night. At age 10. I could only wish that fearlessness of tiny insects was what made her and her siblings less like their peers.
That’s what makes this special needs life so lonely. The ones who try relate but haven’t actually put themselves in YOUR shoes and so relate to nothing related to your experience at all. As I said last time, you feel unheard when your cries are trivialised or the abnormal normalised and the stresses ignored. I can’t. I need to protect myself. I’m fighting too much to fight trivializing of major problems.
During EEG
I could have retorted, “Yeah. You and I truly go through a lot. Remember last year when my child pretended they were seeing demons and even told doctors that and we ended up spending nights in hospital while they did expensive and painful and dangerous tests on her to check why her brain was sick? Except actually, it was her psyche that was sick and she just wanted to get attention from a Paed who had taken care of her the PREVIOUS year when she was hospitalised after she hadn’t felt any pain from a spider bite (thanks to her low sensory registration) that became infected till the infection almost took her leg from above the knee down? Wasn’t that crazy!? Our children put us through a lot don’t they? True outliers! They really are different to most kids. I’m so GLAD you can relate to what I’m going through with my sick body that homeschools neurodivergent children while your healthy body sends your neurotypical children to school. And you know frustrating it is to tell them to get up and get dressed over and over and 30 minutes later they’re still not even partly unclothed yet?”
But that would have been repeating a point I’d already made to them when I begged them to stop minimising major things. And I don’t like being facetious even when someone deserves to be corrected.
No more special needs version of casting pearls before swine. It’s a waste of time and a cause of pain, responding truthfully to a questioner who has no real desire to know what your answer to their question means for you.
A psychiatrist told me (when diagnosing our non speaker) that I need someone to take care of ME. Such people do the opposite, they add to the burden. It’s great having a blog. You get to spit it all out and a page can’t reply and show you it didn’t hear you.❤️🥹
(For context about my principles and faith, and what my husband and I used to believe together, picture the most conservative Muslim couple you can. Do they show their arms, legs? Do they were tight clothes? Do their children do swimming or wearing typical western gym wear? Do they admire gymnasts or ballerinas or go watch them? Do they hug members of the opposite sex? That is who we were. That is who I still am.)
My friend has observed a few things. My ten year old daughter, Amarissa, has observed a few things. This very evening she asked me in front of her dad about those different principles she’s noticed in her dad that made her ask if I’m more Christian than he is.
See, years ago, he used to teach that racing, running against other people, etc aren’t necessary. (As taught by our founder. Probably the same principle as the Jehovah’s Witnesses’ no ‘competitive sports’ rule.) His whole theme was that in the God game, there are many victors and nobody feels anyone is superior in strength, power, ability etc. And as my oldest said last year, “What I remember so clearly, is dad asking the church if they could ever imagine Jesus in His long robes taking part in a running race, or in a soccer game.” Paul also taught against vainglory, emulation but rather about being helpful and viewing each other as on the same team.
As a lover of our founder’s writings, I still live by those principles. Unlike my husband, I don’t hug members of the opposite sex. In terms of earthly relationship, I put our family first. He puts his mother and siblings first. (I left and cleaved) And so, with all the things she has noticed, my girl asked in front of her dad, if I would join him in a race if I was well. I told her, “ No WAY!!” I have better (nobler) things I could be doing. Things that are still exercise but not in a competitive spirit and more importantly not surrounded by males who are immodest. If you believe it’s wrong, you’re not going to choose to be in a sea of it.
She then asked if I agree with her dad for running the races. Again, I said no. She then asked how we (She and I!) will stop him. Her first suggestion was to “take his money” so he can’t pay the entrance fees for these marathons. He then asked if she’d seen him pay anything this year. I told her his foot was sore so that’s why he hadn’t done a race this year.
A friend had remarked on this discrepancy amongst other issues that are different from what used to be taught by him, (Which are sadly, the things that drew me to him as a godly man of our faith) and she said she hopes I don’t die else our faith would die with me. I had to hope along with her.
See those fluffy pyjamas in the photo? Pathological Demand Avoidance (PDA) is extreme anxiety that sees the person needing to exert some bit of control over their life so they don’t lose their mind completely. The first and major thing you’re taught as the caregiver or partner of one with PDA is to give them choice. Make them feel as if they are making the decision.
Instead of my saying, “Nalo, here are the pyjamas you must wear” while her ADHD brain and body dawdled with getting undressed to bath, I asked her if she wanted any specific pyjama. She grandly told me as if conferring a hrest privilege upon me, “YOU can choose any. It’s ok. YOU can decide.”🤣
No crisis. No being made to feel powerless and even more out of control. No anger. No sadness. No telling them what to do. Letting them choose. Letting them ask for help if they want it. And giving freedom for things that aren’t important. Like them rearranging their bedroom without asking.😆
But dad doesn’t get it. Maybe he doesn’t know how to speak and ask. It’s not like I myself ever feel any tenderness in speech so maybe it’s just not possible for him. And children are fragile. So to have dad come out the room and he’s immediately barking instructions while the children are busy with something else, “ Go tidy up your room. Now! Go!” does NOT work even for adults. We want love. We want to be seen and valued. We want to know that you care how we are instead of the first greeting being, “Go tidy up.” Now especially as children, and children with ADHD nogal, is there a need for understanding why the room is in a mess, for checking what they are currently busy with, and suggesting that in X minutes, the floor being made tidy… Then the bed… Like that. They need directions one at a time because it’s overwhelming to get there and have a mountain of work. And because you have executive functioning disabilities (planning, coordinating, decision making…), you truly have no idea where to start so your brain freezes or panics and gets overwhelmed and your body does nothing.
And tone, for PDAers is everything. It’s the difference between peace and a huge meltdown and feeling like you’re hated.
And so, I don’t want to die. My friend doesn’t want me to die. And my children don’t want me to die. But I didn’t realise this was a FEAR of theirs till today.
Amarissa has harbored a fear all this time, that I’m hiding my impending death from them. 💔🥹She asked today if I’m sure the doctor didn’t tell me I’m dying and I just haven’t told them. This was after the three of them thanked me for their breakfast and then as I hugged them, she said it. “Are you sure you’re not hiding that you’re dying? What did the doctor really say? Please don’t die.”
I told her that according to my tests, I’m not dying. (Kidney function only went down by two units. Still waiting for test results on the pus she swabbed that was still coming out the abscess. Rheumatologist is scared the GP’s antibiotics might not be treating the right pathogen and it could be some other bad one so she dug inside and took some pus to send for testing) I told her I must still use my inhaler and she knows I am, so my lungs are not any worse. So no, I have no knowledge that I’m so sick that I’ll die any time soon.
So now I have a few more mom reasons besides being the only one who knows their school status and vision therapists and OT and exercises. To help keep the children seeing in living example what I read and study with them, to be their safe space, to understand their varied conditions and the best way of making them comfortable in a world not designed for children like them.
Abscess pain still there. Still no Rinvoq till I’m done with my course of antibiotics so the nights, pain, stiffness are getting even worse. I woke with my neck and head so sore I could barely see from when I woke up permanently, till maybe two hours later. (Don’t ask me how they are linked) But I can still love.
But hey, I have an ally! Our helper told our girl that she should go with her to Malawi when she goes to see her children so that I can rest. As you can tell from the video below, she’s the chief instigator of all the mayhem. So, not only physical rest from her wet bedding, school work, finding urine deposited in random places, (It’s a thing. Many of us moms in the ADHD group lament but have no real solution) but mental rest too. She came in at school time, “Mommy? Can you believe what Aunty Violet said? She said she will take me to Malawi so you can rest! And then when I’m naughty, she will send me to a FARM!! No way!!”🤣
Ahh the joys! It honestly is HARD. The number of anonymous parents sharing their despair in the groups and it’s over the exact same things I live my life despairing over is heartbreaking but so helpful. We’re all at see. If we were to tell what happens every ten minutes, people would accuse us of what a certain mom was told when she dared to TELL THE TRUTH about her ADHD son.
“You complain so much. You clearly don’t love your son.”
It’s such a prevalent response that even if I had anyone who asked how my parenting day was, I’d never tell them the lows and lows. You see it on disclaimers tired parents give (And don’t forget our non- speaker who is absolutely miserable today and I have no idea why. We’ve done all we can. Taken her on multiple drives, given pain meds, given extra to eat, let her watch jumping dolphins. She attacked me earlier for not discernible reason. Those too are things we don’t bother sharing because only those who live it even think of it as a possible part of your day, and because it’s again … Who wants be reminded that life can have the joy sucked out of it in different ways every half hour? Like my daughter’s eye lid cyst which is NOT gone despite surgery? It is on and on. Your heart resides in your children and when they are miserable, so are you.)
I digressed! I see it so often with mothers and caring, hands on fathers, “We love our son to death, but we are tired. He doesn’t listen to anything we tell him. It’s just fight after fight and my wife and I were left in tears last night.” 💔
What a life. And I’m meant to outlive the very ones who do bring joy, yes, but oh, so much heartache. So much money gone. So much time. And so much thought. I only had ‘breakfast’ at 15:00 today and that was meal one of the four I’m meant to have before each two capsules of antibiotics.
We have to live long.
But nobody takes care of us so we can care for our children in a healthier physical state so we can be strong when they are weak. (The irony of that sentence with an AS diagnosis.)
All of us are survivors or surviving. Long life to us and here’s to a hope of better.
I advocated. I kept stating that my blood pressure was higher than normal. And eventually, I asked for anti hypertensive medication and was given a prescription.
Was it on time? Did I get it soon enough?
This morning, I went for my usual blood tests that I have before I see the rheumatologist. My friend asked something simple. She merely asked if it will take days to get my results back. Thanks to her question, I went into my app and realised I’d forgotten something key,
Besides my lungs, Ankylosing spondylitis has also taken some of my kidney function away. And then I went down a rabbit hole. After re-reading all my results and seeing again how I’ve had constantly mildly dysfunctional kidneys, I looked to the ramifications thereof and found as tidbit I hadn’t known.
High blood pressure impacts your kidneys negatively. Antibiotics (I have a bad infection) also do. But that I knew. It’s the hypertension that shook me. Will my treatment for the hypertension have come soon enough to stop further kidney damage?
We need stable. You can’t ever improve your function (so they say) by you can try keep it stable. So that will be my prayer for this week’s appointment. For the abscess pain to get LOST, for me to be able to resume treatment, for the treatment to work well, and for my kidneys to be stable.
Thanks, friend! I will definitely keep drinking lots of water (for the kidneys) , and praying even more,
Long ago, A was a young girl in love with what she thought was a godly man. She’d never had a true boyfriend before. She was 18 and wanted a boyfriend who’d become her husband. No dumping and crying. No hurting.
But, she hadn’t realised that she’d been raised to view love as a life of crying and hurting because her parents were cruel. They hurt her. They even stole from her when she had earned money making a TV advert. She had no clue what true love is when she met B.
And so, she fell for the man at the pulpit. Charming, great orator, knew his Bible though he didn’t always follow it. She gave grace. “I’m not perfect either. We will grow together,” she told herself.
He had email and letter ‘affairs’ but she kept forgiving him. After all, the church had drummed into her that forgiving means taking back. Now she knows forgiving means not harboring hatred but also saving yourself from further harm. See, he never actually said sorry. She forgave someone who was never repentant, never sorry. Never in the wrong. He just wanted to keep a girl like her. She thought, very wrongly, that by wanting her and not the others (so he claimed) he WAS sorry. After all, her version of love was to only have one partner. Surely a godly man was like that. God still loved David. Except David, when shown he was wrong, fully admitted that HE WAS WRONG. B never ever in his life did that.
And so, A ignored the red flags. When she’d ask him why he’s flirting with other girls, instead of apologizing for hurting her, he’d tell her, “ Dating isn’t like marriage. Your options are still open.” I look back at her choice and think, “You missed it. He was saying YOU don’t matter to him. As long as HE is happy, then YOU must be happy too. You were right. A relationship, especially with a so called godly man is meant to be modest and circumspect and loving to the other party.” I wish I could have gone back and shaken her awake. She was not wrong to expect faithfulness.
She was wrong to think marriage would change his dirty heart.
He proposed and she stupidly said yes. Even though there had been another red flag. Something disquieting. He was very able to tell when people were singing terribly. But for months he had told her that his mommy sang wonderfully. When she finally got to hear his mommy, she was shaken. Singing was not at all a talent she had. She sounded worse than the people he criticized.
Red flag. A man who worships his mommy so much that he can’t be logical and honest will never become a man who makes a great husband. He already married his mommy. She is in charge of his heart. And if she was also unfaithful in her marriage, then you have two red flags. A mommy’s boy who will never brand his mommy as an adulteress. A mommy’s boy who – if mommy is never wrong – clearly won’t think adultery is wrong either. And this mommy, was an adulteress.
She should have run. But, she told herself that they didn’t live close to mommy so she’d be safe. She forgot that there are phones, so mommy’s voice and influence would ever be present. He’d never grow up. He would always be mommy’s boy, not a husband to her.
As with too many African families, mommy was centre stage. He never defended A. When she begged him to speak up, he’d tell her that because mommy never said it to him directly, that it had “nothing to do with” him.
Red flag. A man that loves you will always defend you when people hurt and lie about you. There’s a young Xhosa couple whose family of the husband is like B’s family. The Bible doesn’t rule. But when the husband heard that his mother and aunt had said something awful to his precious wife, she had to stop HIM from standing up for her. THAT is a husband. A man who protects his wife. A man who loves the family he created.
Time went on and A gave up on ever having B stand up for her. When he was ( predictably when the rest of us look back) been unfaithful to her, this time, her greatest reason to divorce was not him, it was his ever present, ever disruptive mommy and sister.
But.. She could not escape. No money. No schools for her children. Out of the workforce for decades raising their children, who would hire her ?
(The number of stay at home mothers I’ve spoken to who are marginalized and hurt and unable to escape BECAUSE of putting their children first is depressing. The devil has turned what is good into a terrible trap for wonderful women.)
But things were never right. He openly became the ungodly man he had ever been. No more pretense. He lived for himself and his mommy and his sister and she was just an add on. When they lied about her, he told her pointblank that he was tired of her saying things about his “ immediate family.”
That’s when she gave up.
She was married to a mommy’s boy. Every sensible and logical person knows that your wife and children are your immediate family. She was nothing. That’s why he kept his mommy and sister happy even while they hurt her. She was a stranger to his HEART. Being a husband meant nothing to him. He gave money but not loyalty and love.
And so, we mourn and we cry and we get angry on her behalf. And we wonder why he bothered marrying her when all he would do would end up breaking her.
A good woman is hard to find. It’s because they’ve been taken by bad men who seemed charming and godly from the outside looking in. And were taken when too young to understand how true, proper love works.
Love doesn’t hurt. Love cares. Love apologises when wrong. Love protects. Love is honest. Love is love in public and in secret, at home and outside. Love was not what she found. It was the love she’d been given as a child. A love that stole from her.
I want to dive deeper into red flags.
There are many hurting husbands and wives out there. I want to share one more story soon. From a man’s perspective after his supposedly Christian marriage also imploded.
My biggest pieces of advice from the story of A is
If his mommy can do no wrong, he won’t care when she does you and God wrong.
If he minimizes hurting you when unmarried, unless he becomes converted, he will do the same when married.
If you ask him while dating, to obey certain Bible rules, and he doesn’t, but pretends to on the pulpit, he will continue as the years go by, again, unless he is converted along the way.
Do not marry if you haven’t analysed how you were raised. If your parents were mean to you, if they insulted you, criticized your looks or body and never cared about your thoughts, joys, didn’t ask how school was going, check if you’d done your homework and offered help when you were struggling. That wasn’t love, it was neglect and abuse and until you realise it, you’ll fall for an abuser.
The first time he’s unfaithful, run. With all these other red flags, there is nothing to stay for. He is no David. He’s a Judas Iscariot.
They said I should write a book 