Author: Grace by any other name

God-lover

When ADHD is large and in charge…

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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.❤️🥹

Long Live Mom, Viva!

Grace by any other name2 Comments

(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.

Simple Inquiry- The AS Life

Grace by any other name3 Comments

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,

The Red Flags

Grace by any other name1 Comment

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.

I wasn’t there when my daughter met her sister

Grace by any other nameLeave a comment

The video I believe I said is create LAST week. Sorry folk! As you can tell, as has slowed a lot down. And as you know, work has increased but at least now I can share – for those who can hear- how my daughter’s sister felt about meeting her for the first time ever.

HERE or just click on the play button.

Your Shoulder?

Grace by any other name1 Comment

Do you ever think about your shoulder? As in, the entire bone running from your neck all the way down to your fingers? I still wish I could tell that dismissive orthopedic guy that he was a dummy. Even a GP took my shoulder pain seriously enough to inject cortisone into it. Anyway…

I don’t think about my shoulder. I do think about my painful and swollen, ribs, stiff neck and hip and SI joint and back. And feet. But it had been a long time since my shoulders had wanted to remind me they exist. Last night and today, they joined in and I just couldn’t sleep. Hands sore, left shoulder sore. From neck down to the tips of my fingers.

Cape Town is definitely no good. We have high humidity and I’ve often wished we could move to somewhere warm in winter to avoid winter flare ups. No weapon formed against AS has won yet. And I’m tired. Tired of pretending to be ok. Tired of knowing people know I have AS but not giving grace and empathy and tenderness. It’s so LONELY. It’s my ten year old who worries. So let me re-phrase that. Except for my ten year old when she notices I’m limping, there’s no empathy and tenderness and worry and, “I don’t know how you do it.” No concern and care. All I got when the rheumatologist said I need to ‘resign’ my teaching job and go on disability aka stop homeschooling, was a husband asking, “Is she crazy?”

And I’m not alone. Too many men don’t want to understand how bad it is. I’ve often wished I could give him just an hour of the pain and fatigue I’m pushing through. Just an hour. It’s so common for men not to get it or want to get it. If you’re in my shoes, you and I aren’t the only ones. I personally know people, and have seen it in AS groups. In general for all ailments, most men don’t get it.

And then, with the confirmed learning disorder diagnoses, comes more work, not less.

What is this??

I have mixed two dysgraphia curricula together as one full one that the educational psychologist recommended is just too expensive. Not only did physical goods like these ‘unknown to me’ things that arrived yesterday, but a whole lot of ebooks too. It’s a whole new journey that I first have to study. And I’m not even coping with the current one.

I forgot to put antibiotic ointment in my girl’s eye yesterday. Thankfully we’d reached the right number of days but I wanted to do some extra days because she fiddled so much with her eye lid. Thankfully the pain is gone and it is settling down after surgery. I forgot to take all my medications yesterday (and most days.) When I woke up from pain, I was wheezing. Time to take the forgotten inhaler and use it. Time to take my forgotten nasal spray for the chronic sinusitis and use it.

I am on the edge of breaking but the children rely on me. The hours in the day don’t match what I have to do for each child. Nor for the amount of rest the rheumatologist and I both know I need.

Of course, having to study the dysgraphia curriculum and figure out what is needed per day is adding to the daily trials. Besides a husband who doesn’t understand, there is a lack of special schools anyway. I’d be trapped either way. And so, I have to get a heater and get this room warm so I can prepare even later into the night and start earlier in the mornings. Complicated by increasing pain that sees me having to wait for the painkillers to kick in a bit so I can focus on my Bible reading FIRST. But I find myself falling asleep when reading. AS fatigue keeps you tired anyway. But add lack of sleep…

Winter in Cape Town (and elsewhere but I’m here!) is brutal. Pretoria is less humid and so my oldest two had had no problems with their fingers like they have had for YEARS here in our winter. Until yesterday. My poor daughter’s fingers swelled up way more than mine but thankfully she’s not feeling any pain yet.

We need more hours in the day. And with my non- speaker responding more I have to add more for her too. Puzzles! She’s been loving looking at the picture. She pointed at each animal I asked her to point at. Every single time! She’s never done that before! She shouted in a high pitched- kinda scary because it was an unexpected and new -voice, “Puzzle pieces!” for the first time ever when I took a new puzzle to her room and told her “Puzzle!” She gestures more. Wants the room dark when she’s having her quiet time. She copied my movements when she had struggled with the pieces. Understanding what to do after I only did one for her.

Everyone needs more work and attention. But my body is failing me, there’s not enough time, and their education is becoming more complex. What a crazy ride this has been. And it’s not about to end!

I hope the trials of your day today don’t wear you down. I hope we all survive today and every day. I hope an end is coming soon and I’m thankful to the author of @lyfedreams for commenting. When I have time, I’ll scroll all the way down. People all over are dealing with trauma and pain. Overcoming and sharing to help others. Let’s do it! Grace and peace to all!

The Wallet

Grace by any other name1 Comment

A lot has happened, folk! One morning last week, I suddenly planned for my ten year old, Amarissa, to meet her birth half sister the very same day. I’d already arranged with older girl who is studying at uni, to fetch a laptop we’d bought her but my fear had been Ammy might be overwhelmed so I’d planned for when I thought she’d be in surgery. (Who was I kidding!? As happens for me, you’re starving and thirsty and two hours after the time you were told to get there, you still have no idea when exactly you’re going in!) Anmy was terrified. The knee surgery scared her for any new surgery. Even a song I played in the car had her asking me to skip it because it was the song that was playing the day I’d begged for an appointment and during it, was told to go home and pack and go straight back to hospital for IB antibiotics and surgery. She never said it then, but the drive home after realising I hadn’t just been overly cautious about her leg was scary for her. So now knowing she needed eye lid surgery to remove a cyst was terrifying. The closer we got, the more anxious she was. My heart broke for her and I couldn’t take her. My stupid, failing body wouldn’t manage the drive and also the sitting. So I thought she needed a distraction.

It was great! I’m so glad I did!

I plan to do a video about it before this week is over so I won’t say much about THAT.

My Twin B had an allergic reaction to ‘something’ that impacted her finger and cheeks, and then from scratching the cheek area, her poor face was infected, so went on antibiotics which I believe caused prolonged constipation. (That was a long sentence!) She became sadder and sadder and ate less and less. After prunes and prune juice didn’t work- was thankful she enjoyed eating the pureed prunes as she has become stricter about what she doesn’t like- I then moved onto OTC laxative syrup and after four long days, we had POOP! Whew! I know what prolonged constipation is like thanks to my IBS so my heart was breaking for her and I was WORRIED. What if I was ignoring something bigger than a reaction to antibiotics? After all, my experience with antibiotics has been abdominal pain, nausea and runny tummy. Not blocked up tummy. Was I wasting precious time and she had something worse going on? I had set up an appointment for the latest possible time just in case… And I’m thankful I DID have to cancel. I have put her on a maintenance dose of Lacson for a few more days and literally shouted, “Yay! She pooped!” this morning. As if she hadn’t begun the previous day!

My oldest two came for holidays this week. Eduvos- where they are studying- has blocks (quarters) instead of semesters so this is block number two holiday season. Ammy and oldest daughter have always had a prickly relationship and this is by far the worst. I blame both girls. I told Ammy once that she’s acting like a teenager and as replied, “Uncle T also said that!” Two stereotypical ‘teenage’ girls sharing a bedroom is a recipe for disaster. It has been constant fire fighting and telling them to just stop! So I thought I’d try some reverse psychology I left the room when I heard their raised voices yet again, and proclaimed to Amarissa, “Alright! I am changing Eliora’s flight. She will leave sooner now. Then you can be in peace.”

It had the desired effect. Ammy shouted, “Noooo!!” and went back to their bedroom which she’d left in a huff and hugged her and told me, “She’s NOT going! She’s NOT going!”

Boy am I glad that worked! If she’d agreed, I’m not sure I’d have afforded a new ticket!

And, I gave my son… I have a 20 year old son! Me! I don’t feel old enough! A wallet for his belated birthday gift. I didn’t plan the timing to send it well – once again even my Apple Watch stats are telling me my walking is bad and I feel it. I feel horrible, always tired and am faking being ok a LOT. I realised too late that Paxi wouldn’t deliver on time, so I just told him he’d get it when he comes. I sent a birthday cake, and ordered them take out on his actual day. That’s our birthday thing on top of a gift. The birthday person chooses a restaurant meal they want and mainly because of our non speaker and my inability to sit long, we then get it delivered. I had to now buy TWO cakes and meals because the small ones said they too were celebrating his birthday and deserved the same even though he wasn’t here. All things I can’t eat thanks to stupid IBS!

For me, it’s the anniversary of the day I became a mother for the first time. Given how my values are based on the fundamental teaching that the mother is the educator, spiritual guide and nurse and nanny, this is a very important anniversary for me too. Plus of course, it came after prayers and failed ovulation medication to boost fertility. So it’s big to me. I too should get a gluten free cake on birthdays. After all, without me, none of them would be here in this family.😎

But buying a gift is difficult. Because he now has his own Kindle app, I don’t know which books he has and hasn’t read, so I couldn’t buy him a book. So I got a wallet.

I thought it would be boring for my son who said to his little siblings that no, he does NOT feel like he’s a man. Not even close to feeling like a man😅. But I loved the inscription so to me it was worth a shot. At the very least, he’d know I was thinking of him.

I was not prepared for how he immediately emptied his old wallet and transferred everything into THIS one. That meant the world to me! And a day later, I found out exactly how much it meant to him to.

This is one happy mom. All I want is for my children to never forget what their mother has taught them. I am not homeschooling him anymore, but the prayer and hopes and trying to be a pure influence remain forever. I want His Creator to tell me I did everything I could to make his path to heaven smoother.

Let the church say, “Amen!”

Broken Dreams and Torn Cupcake Liners

Grace by any other name4 Comments

I used to bake. From when I was 13, I baked. Sometimes my dad and I would bake at the same time. I’d bake chocolate cake and he’d make muffins. He was the one in the family who made idombolo (Traditional S African steamed bread made in a large pot of water.)

I baked when I’d go home on weekends. I baked when I went vegan. I baked gluten-free when my gastroenterologist pointed that gluten is a huge IBS trigger. I baked for my oldest two.

But then AS progressed – as it does- and I couldn’t bake anymore. Not often and not without having to rest and then sometimes forgetting there’s something in the oven because I’m now working on something and it burning.

I had hopes. I truly believed Rinvoq would revive me. I thought I’d be able to handle laundry like it’s nothing. But wow, i feel like collapsing after just one load hung or brought down, and my arms don’t want to be raised for long. I can’t be the mother and worker I wanted to be. Also, I thought I’d be able to stand and bake. Instead, I don’t even make my own IBS-friendly food because I’m in so much pain after cooking for the rest of the family. Rinvoq has not changed my right leg. I can’t even do might walking exercise for five minutes. Movement and standing and sitting cause worse pain than ever And so, the cupcake liners I had bought, remain unused.

Unused till today, when Ammy (my ten year old) had decided to raid the kitchen and find unorthodox hair decorations. She found some-the cupcake liners to do something different with their wool I’d put in their hair.

It was a painful trigger. It was a waste buying them. The hope was not fulfilled. So instead of being angry at the wasted money, angry at them being used without permission for something they were not bought for, I held my peace and instead commented on how they should ask before taking people’s possessions , and that it’s very creative.

Hurray for crazy creativity. She should be one of those designers whose clothes when on the runway dazzle ( If you have different tastes to me) but aren’t for normal people.😄

AS keeps stealing from me. But my children have taken a few things back and use them for a different purpose.

What Will Your Wife Say?

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This morning, someone sent me a voicemail passing condolences to me regarding an in law who passed away. Except I didn’t know the in law had died. They’d become an outlaw when they pointblank refused to care for their child and left them for others to feed and love.

Never even a visit to see the child, nor to have the child visit him.

So I contacted the relative and with a sense of irony to gushers where she stood, passed condolences on for the death of her husband. The relative quickly replied that they would pass the message on to their child who. unlike the relative and I, is truly grieving.

Children have an idealized version of their fathers. Especially little children. Moreso one who engaged with father only via telephone. He could be any kind of hero when he’s just talking and not reprimanding you or making false promises or not in your presence just sitting there while mom is mom and dad.

But I and the widow know better. So do other relatives and friends I told. Some people are ‘mourned’ with as much sorrow as if they were complete strangers, because of how they acted, or worse yet, there is a sense of freedom in being freed from shackles binding one to the now deceased spouse.

What will YOUR wife say to herself when random people think she’s grieving and treat her accordingly? Will she think, “Really!? He wasn’t a great husband, what is there to miss?” Or will she think, “My heart is so empty. What will I do when people move on and I’m still here grieving?”

When colleagues and ‘friends’ praise you, will she think, “Yeah, to YOU he was like that because he craved admiration, but to me who saw through him, who saw the lies he pretended to live when he spoke to you, he was as artificial and as loving as a plastic flower.”

Or will she think, “Yep, that’s him alright. I will miss all those qualities and the ones he had as a husband, a role he played only with me, his wife?”

God matters but many men (and women) don’t care about God, and God isn’t the One sending my relative messages. God isn’t the One asking my relative to pretend to feel feelings he never awoke in her. People are. And people are very easily deceived.

Are you a liar? Pretending to study God’s word when in reality you only study when you’re going to preach or teach? Or are you living in His Word? Would your wife say you were a godly husband? Or is she hoping you don’t die so she never has to say anything about you?

Are you really a family man as you pretend to be at work? Or are you fully invested in the interests of your wife and children in a way you can’t even fully portray at work?

Were you generous to strangers who would praise how giving you were, but withheld your love, attention, affection and heart and ears from her?

Or would your wife stand up front if asked to speak, and be lost for words because you were her heaven on earth and now she’s in her own version of hell?

What I know is that the same word came from the widow as came from me when I told a friend the husband had died.

“Numb.”

We aren’t cold hearted enough to not care. But we have only a shadow, an idea to miss. Someone others loved because he pretended to be loving, when in reality, he was a source of strain and pain to those who truly tried to love him..and win him to God.

What will your wife say to those who are close enough for her to be truly open with?

And if it’s justifiably negative, what are you going to do about it today?

Oh, I Want My Amazing Coloured Coat Too!

Grace by any other name1 Comment

We sang this in school. It was one of my favourite choral productions- Joseph and the Amazing Technicolour Dreamcoat. We sang a lot from there, a show I’d never seen but knew was done by someone extremely famous, Andrew Lloyd Webber. We sang a LOT of his songs in our choir.

My friend told me of how she blacked out this week and got injured. The world no we chronically sick people live in is such a parallel world. We are constantly suffering while everyone rose lives their day hot by hour unconscious of the pain, while the moments that allow the sick one to forget the suffering are minimal. I blacked out once at school. Found myself at the bottom of the steps with my friend extremely concerned and wanting me to go to the sick room. But I didn’t want to miss choir, so given I was feeling ok, I pressed on. I didn’t even think to tell my parents. As always.

This is the same school friend who would tell me I’m walking “like a granny” when what we now know are AS flares started up. The pain in my feet would burn so bad and I’d try curl my toes so they don’t hit the floor hard. My toes and finger so swollen I could barely hold my pen to write and sometimes just listened after showing my teacher why I wasn’t writing. I’d get home and make a mug of cocoa but my fingers couldn’t even curl to hold the handle of the mug.

I don’t know why, but I woke up this morning and as I tried to psyche myself up to get my pain tablets but the pain so bad I didn’t even want to move, I remembered this song. It was sung at the beginning and end of the play. For me, it represented Joseph in prison. Alone and sad. Weeping while the world slept. Forgotten. Sold by those he loved. So alone in his innocence. Just like me when I was a child.

What memories does this little one have hidden behind her smile? Nights of pain. Nights of lying on the bed she shared with her parents rolling around trying to figure out why her legs hurt so much, night after night. Doctors claiming it was growing pains. I’m still waiting to grow, then.🥹The stomach pain bringing her first colonoscopy two years after this photo. The daily burning abdominal pain as she walked to the train station with her daddy after school.

When we were still newly wed and living in Kenya, they had the production going. Joseph and His Amamzing Technicolour Dreamcoat. We’d stopped watching most shows by then but this I just had to see. My husband had also done it at his school, so it would have been nostalgic for both of us.

As I sat and watched, the tears just flowed for so many reasons. Nairobi, Kenya was the first time I knew that Black people (not just a few here and there, but almost an entire cast!) did theatre. It was amazing watching all these Black people singing songs we sang in our very British schools. Just seeing them so energised and hearing those lyrics coming from their lips was emotional. I don’t know how many black people TODAY in South Africa know the works of Webber.

Singing the lyrics as they sang all these songs we’d sung in school, took me back to school. The choir was my safe space. Music always took away emotional and physical pain. It was there too that instead of insults about my looks or body, I was told I could do something well. Very well. So well the choir teacher would tell the first sopranos that I was carrying them and they were flat so I should keep quiet and they must learn to sing the right key. (I can see where I got my absolute distaste of bad singing😩🫣 It’s jarring to my ear. There’s a church that has a very flat woman who leads with a very loud voice. It’s unbearable on top of how many don’t stick to the actual tune which we at our Xhosa churches grew up singing because we sang the notes as they are in the hymn book.) I digress. Beautiful music was my healing place.

I could forget myself and be the person singing the words. I could be Joseph. Betrayed by those who loved him. I could be Joseph, seeing how God allowed the bad to lead to great good. A good better than his past. I could see God better when I sang to Him. Even in normal assembly.

God appears vividly coloured when I sing, just like when I’m reading His word. I can forget the pain I’m in. I can forget that yesterday my ten year old wanted me to go back to bed as the flare began again. I can forget the neck pain, headaches, deep sore in my gum preventing me from eating ok and brushing my teeth (Rinvoq side effects), hip and leg pain when I’m lying here crying over lyrics from decades ago.

I too wish I could have someone “give me my coloured coat, my amazing coloured coat.” (Last line of the song) I just want to be ok. Joseph wanted to be ok. And the God Who eventually led his bones to the promised land, will heal mine one day. But oh, I close my eyes and know the someone far away who is weeping, is me. And maybe Flydah in Kenya, far away. Thank you for reading my heart ramblings and encouraging me.

By the way, I saw THIS version below first when I looked for the song so I could sing along to it. I felt so stupid as I watched. It took me ages to figure out why the lead singer was wearing a colourful ‘dress!’ Ankylosing spondylitis brain fog. Even Ammy quotes “brain fog” at me when the cloud caused by AS messes up by memory or my speech. I love the mix of singers. THIS video is what made me realise how BIG this song is. I truly never knew even though people have acted the entire story. 🤦🏾‍♀️Maybe the blacking out and falling down the stairs knocked some brain cells out.