I Dream

Grace by any other name2 Comments

I dream. I wish. I hope…

Side effects are not too bad but they are there. I have begun with headaches, stomach pain, where the hole in my jaw was has begun aching and I’m worried any latent infection that might have been there has been revived. I’m dreading making my check up sooner because it’s so painful to drive and my Endodontist is ‘far’ from where we live, and a mouth ulcer on my tongue is forming.

That’s, of course, is nothing compared to how susceptible I now am to sickness. JAK inhibitors are worse than biologics with regards to making you vulnerable to catching disease, and you all know how we had to stop Enbrel so it never achieved efficacy. One, because you can’t be on an immunosuppressant while sick (obviously) and because I kept getting sick, once even going to Trauma, so I never got a chance to take it long enough to see if it would put me in remission, so we quit.

This time, I’m armed with the N95 mask my pulmonologist said I should wear in busy places. I have sanitizer in my car- though not helpful when I go for my limping Sunday shopping because we use my husband’s car and I don’t have extra sanitizer and I know if I remove mine, I’ll forget to return it.🤦🏾‍♀️

I’m better prepared to try AVOID getting sick.

But I can’t ignore the extremely high risk of heart problems, hospitalisation due to severe infection – a mask doesn’t keep you safe from bacteria. Remember how I almost had it have surgery when my finger got infected? The liver issue is big. And according to my insert, “frequent” just as people in my groups have experienced. Mouth sores, painful acne, stroke, sepsis… Very dangerous even without my already having damaged lungs thanks to AS itself. 🥹

So, if the side effects don’t become so severe that like many others, my rheumatologist pulls me off the meds, and I can get rid of these horrible headaches, heal my current sinus infection and escape from too many mouth sores and having Rinvoq WORK, what do I dream about?

I want to be the cook and baker I used to be. My four little ones don’t even know that person. I used to made delicious vegan zucchini chocolate cake. (I mention it because it sounds weird out of all the things I used to bake, but it worked well!We all loved it.) I made yummy kiwi fruit ice-creams. I baked and cooked on the same day. Today, just cooking is a whole day affair (also because I’m still mothering and teaching and doing therapy) and it’s becoming worse. I’m in so much pain and fatigue that I’m missing out on full activity with the children. So with cooking, I end up finishing late at night in extreme unbearable pain and don’t forget, I already take 10 pain and anti- inflammation tablets a day. I end up still in worse pain the next day I cook.

I’ve now opted to order frozen cooked meals for the family and then I cook the vegetables or make the salad to go with the meal, and just season and mix the food according to our taste. Even that hurts. It just hurts less and is quicker to achieve.

I can’t wait till I can split up the middle two children’s meds without suffering, forcing myself to keep going till I’ve broken the ones that need breaking, removed tablets form their blister packs, putting them into the relevant child’s weekly pill container and needing to recover thereafter because it’s too much standing.🥹This disease is cruel!

I miss baking. I miss the smells, the help I used to get from my now teens as little children. How they enjoyed licking the batter from the bowl and whisk. I enjoyed it soooo much, ever since I was 13 years old! I’m too young to not be able to do this!

I dream about being able to do all the school work and vision, occupational etc therapy I set out for the following day, instead of feeling like I’ve deprived my children of my best.

I dream about taking walks. Driving my children to see nature, or to a play park. And enjoying watching them marvel at the animals. I dream about enjoying going to the beach with them. I haven’t gone in over a year- they go with their dad because after five minutes, I’m hiding how in pain I am and I’m the first one to eventually call it quits while the children are still having fun splashing in the water.

I left the date at the top on purpose

This was the last outing I took with them and you can see the impact it had on me. And it’s been over a year now that my Nalo has been done with her Pharoah phase.

I dream about being able to make the bed without pain. To change bedding and be able to hang washing without shoulder pain and arms just not being able to continue without a long break. I miss piling all our laundry into one basket per load and carrying it out in one go instead of taking a few clothes at a time… I miss ironing. Those activities are so soothing to me. I miss being able to clean my own bedroom!! I sweep only maybe a square meter and I’m in too much pain to continue. (I also miss dusting. Yes, I know I must use a wet cloth so the dust doesn’t fly around and trigger illness. My rheumy did tell me.)

Even holding the children’s tablets is risky because my fingers don’t close properly and I’m dropping things a lot these days. Closing the children’s bottles hurts my fingers when i have to press down on the lid.

I dream of painless hands.

I dream of lungs that don’t progress in their scarring. I have begun my winter cough and it’s frightening the children because it sounds like I’m sick. That smoker’s cough that worried the GP so much that she wanted me to return before even a week was over. My pulmonologist made it clear that only finding the right treatment would slow down lung disease progression.

I dream of exercising.

I dream of being able to read to the children in the evenings. I can’t even lie in bed and read like I did most recently. Holding the book causes shoulder pain.

I hope that I get stronger, have less pain, my lungs stabilize and the chronic fatigue go away so my daughter stops worrying about me.

I dream about being normal.

Please God, may this be the one to stop the inflammation in bones, tendons and ligaments. To stop killing my lungs. It is possible. May it be MY reality.

ETA- in the meantime, I’ve now got another painful white ulcer on my hard palate at the top right to add to the tongue sore. PLEASE, let this be worth the increasing suffering. I haven’t even taken the tablets for a week yet. I hope we have here in SA, the “magic mouthwash” the States have that they tend to give to chemo patients who have terrible mouth sores that at least temporarily numbs the mouth-apparently a mixture of numbing gel and what not. I’ve bought folic acid and L-lysine because people said those sometimes help with these sores. One poor woman was told to stop the treatment because the sores were not going. It was sad because her disease was responding.

This is one frustrating disease. We live on dreams, dashed dreams, hopes fulfilled and hopes denied.

I dream of minimal to gone away side effects. Some do stop after a few months.

Moments

Grace by any other name1 Comment

You have to feel the sad moments, mourn them, then happily (or at least contentedly) move on. But it’s very difficult when you carry guilt in your heart.

It’s going into winter which means, colder nights and mornings. Not good for chronically ill lungs which get narrowed by cold air. I’m already on an inhaler given me in March by my rheumatologist after she listened to my lungs. (Hey, the positive news is that Medical aid will pay for my inhalers and two chest x-rays and a chest CT scan until the year 9999!)

But you can’t repair lung damage and mine is getting worse. From the normal winter dry cough that used to prompt an old doctor friend to tell me to get it sorted out ASAP to today’s bad sounding cough-the one that shocked and worried a GP… Yesterday I felt guilt over THAT. (I’ve already posted about AS guilt and I have more. Amarissa’s educational psychologist said that during her emotional assessment, my girl expressed worry about my Ankylosing spondylitis. NOT GOOD.) I’m used to the new sound. Deep and like you’re sick, triggered by movement that makes you breathe faster. I coughed and continued with the laundry because it’s normal to me, but my five year Nalo, echoed by her nine year old brother, Micaiah stopped their conversation and their chatter with each other and our half day driver and asked, “Are you ok, Mommy?” I felt so so bad. I told them it’s ok, it’s me, nothing new. Then I coughed again that deep cough a few moments, and Nalo said, “I’m sorry, Mommy.” Amarissa also said something in between but I couldn’t hear her clearly. But what I do know is that I ‘made’ all three children worry.

Not good.

Then in the evening, they went with their dad to the pharmacy to choose sugar-free sweets for their weekly treat using their pocket money. (They don’t have bank accounts. We just tell them they have money and then forget to count how much they’ve used up!😆) This time, Micaiah felt sad. He said, “I’m sad.” Yep, he was. Don’t tell me autistics don’t have feelings. Another lie! Many do! They just might not excited out the way you expect.

Some boy has told his mother, “I don’t want to be like that boy.” While looking at him. We have discussed (on here) the genetic syndrome that might be the cause of the low set and back facing ear lobes (and other invisible unless he’s naked signs) so perhaps the child noticed them? I don’t know. All I know is that my son was VERY hurt and his sisters were hurting with him. I wish I could protect my children from the world!!

I told them that perhaps the mother had been telling the boy to stop nagging for things and be quiet and calm like Micaiah. I REALLY implied that was the most feasible reason. 😅It indeed could have been. I’ve heard mothers tell their children to stop it and be like X… It helped soothe his pain that he had felt for over 20 minutes.💔He still wasn’t ok 20 minutes later which is when I concocted this possible reason.

We have no clue why the boy said it. We know how it impacted my boy. I wish I could scoop him up and keep him safe from all harm-physical and mental.

I’m going to do a short and boring video on YT on rejection sensitive dysphoria which I’m very sure Amarissa has. I just wish their brains allowed them to feel happy all the time. To not feel what they shouldn’t be feeling. (Even neutral comments or silence makes those with RSD feel negative about themselves.)

I wish they’d go through life feeling like how they feel in the videos below. I wish I could protect them from all worry and anguish. My non-speaker has been having a terrible time this week and we can’t tell why. Lots of screaming and crying, prolonged and saddening and tiring for me too. I wish I could magically make her able to express why she’s so miserable and then be able to fix it. Thursday she again did her “I’m going to break your neck. How dare you get down on your knees and try comfort me with deep pressure?” This after she’d already pushed me, pulled my hair so my neck snapped back, and tried to pick me up (to hurl me down?). Our helper is worried about how she will be when she is much taller at age ten because she’s already so tall now. This week is Had been mentally, emotionally and physically awful. Side effects of Bree treatment attempt included. I myself need more of the moments below!

Have a B lovely weekend

Shabbat shalom to those who keep Sabbath.

Why Are You Subscribing??

Grace by any other name2 Comments

Don’t even ask!

I suddenly have new subscribers here and there even though I haven’t blogged in ages and the notifications are making me feel guilty about disappearing!😅

So…Update… NOTHING HAS CHANGED!🤦🏾‍♀️

I’ve failed Cosentyx. My inflammatory markers are still too high, my rheumy still feels swollen joints, fingers etc. I’m still stiff when she asks me to move my neck. So now after giving the Cosnetix nine months, she’s given up. I was so scared that maybe I shouldn’t be grateful that I wasn’t in “I want to be dead” pain, that maybe my hopes for what treatment can do were too high and I should just be glad I don’t wish to be gone. But she assured me that her own clinical examination told her I wasn’t really undergoing ‘treatment‘ with Cosentyx.

I saw her March 3. It’s now April 5. And again, time has gone with no medication in sight. I will have a R1700 or so co-payment to make for the portion medical aid isn’t covering, but despite their approving ONLY FOUR MONTHS FOR NOW treatment with Rinvoq (daily tablets), nothing has happened. In desperation I texted the zrinvoq nurse on Thursday night when I couldn’t sleep, asking her to just get me the medication even though we don’t know if I’ll get funding for the copayment. She said she had sent the prescription to the pharmacy and they’d send me an invoice. It hasn’t come!!

Needless to say, I’m not happy.

And I’m back on an inhaler. I told you, NOTHING has changed!

The children too have not changed. Which means I am always anxious about what will go wrong each morning. What will make which child throw a huge tantrum. What will suddenly set our talking twin off and make her violent… Like punching her big sister in the eye because her big sister dared to hug her twin. 😔 Or I wonder when her larger twin will start attacking us… Or when she will walk into my room and start wanting impossible things. (Like removing the camera part of a Tablet.)

It’s such a crazy life we live. They can both be so sweet and tender. But then in the twinkling of an eye, talkative twin lashes out without warning, or less talking twin throws a mega tantrum.

Here, she was so SO excited about the watermelon juice they were making “without a mommy watching us.” That request didn’t go far! I ended up doing more than three quarters of the work anyway. He he.

And violent twin can be so gentle.

Life is like that. For all of us. But before this, my highs and lows weren’t so dramatic,

Year Ending

Grace by any other name1 Comment
School time!

The year is ending and we have not found the magic bullet that will kill all the pain. We haven’t found the magical elixir that will reduce inflammation. Instead, my inflammation has reached heights it hadn’t reached even before treatment.

A S marches on.

But, so does life and so does love and so does joy and so does contentment with I hope, some godliness a lá Paul’s biblical statement that godliness with contentment is great gain.

Nothing amazing or miraculous has happened. On the contrary, autism plus intellectual impairment has made life harder. The older our non-speaker becomes, the harder it is for us. Take yesterday. I didn’t actually tell our consistent blog commenter what one reason was, when she texted that she hoped there had been fewer tantrums yesterday. Oh not a chance! The day before and yesterday were the worst of the week. One reason? I gave her a little toy car to play with that she loved. But then, she wanted to open it up and remove the cute little flowers that were inside.

No can do.

And she could not understand that I was saying I can’t. Any denial comes across as if I’m either being purposely obtuse, not wanting to grant her her wish, or slow. So? If she continues pushing it at me, and screaming, throwing herself around and pummeling me, eventually I will do what she wants.

We had another day. She wanted an app on the iPad. But she couldn’t wait for it to download. Chaos ensued as it always does when apps SHE pulls me to put on, take time. I was at fault and I needed to make the iPad hurry up.

That’s what we live with every single day. It’s not getting better. The older she gets, the more she finds that’s not according to plan.

My son, my nine year old, I was so excited I put on video, immortalized it. He had finally learnt how to rhyme. Alas, he has now forgotten. The same boy who would make up rhyming words without being asked to, randomly during the day, couldn’t even strict given rhyming words.

My ten year old? Her dyscalculia is also not improving.

I’m lying here and I’ve actually got absolutely nothing amazing to tell you. I’m single parenting it as much as ever, more than ever. I’ve gotten worse physically, but I’m parenting alone MORE. Doing much..on my own.

Somehow I have to link all this with the fact that love, joy and contentment continue on. I have no choice. God requires it. And they are real. I feel them. I’ve removed dead weight from my life-the people who bombard me with their woes and then add at the end, “I haven’t forgotten you, I’m thinking about you daily.” Yeah well, actions speak louder than empty words after text full of my needing to be a shoulder to lean on. I can’t. And it’s freeing. It allows me to give more to those who give themselves too. To let more of their lives join mine. To not cast my pearls before swine because that’s what you do when you open up to someone who’s merely waiting for you to finish so they can tell you their drama.

I’m enjoying asking, sharing, showing the hard parts. Showing that life isn’t the glamour it seemed to be when I was holding everything in and pretending I was loved and appreciated. It takes many years to see emotional abuse and neglect! But now, I’m living in the truth of the strong woman I am, the daughter beloved by a King she doesn’t deserve. Loved beyond measure. My earthly worth reflected in those who share with me their heartaches while asking me daily about mine.

It’s hard to be there for someone whose days are getting worse.

It’s hard to ask when you don’t know how you’ll answer.

It’s brave and loving to ask when you know the answer won’t be good news. It brings joy and contentment. It’s God on earth. It’s giving of oneself. It’s what brings extra smiles above those my own children bring me. It makes up for days in chairs waiting for IVs of high dose cortisone to work. It makes up for bending down and falling against my five year old (thankfully she was seated!) who innocently and so very funnily asked, “ Mommy!! What are you doing??”

And then didn’t bat an eyelid when I told her I was falling! I’ve quit Lyrica- the famous fibro, depression med my rheumatologist added. I was dizzy, losing my balance and losing my ability to speak. It was scary. I’ll pray the next Biologic we try in MARCH (probably starting in April or May?) will be THE one.

So, I keep going forward into another year with hope..again.

I think this blog expires in March. Maybe I’ll see you again. Just know I’m alive. I’m in pain. But I’m loved and I am loving. God bless us all as we look back..and look forward.

Signing off

The STILL Ankylosing Adventist

Steam

Grace by any other name1 Comment

Hello, my faithful Flydah. I’ve run out of steam. I can’t create joy out of trouble. By the time I have two out of six children in bed, I’m extremely tired and in pain. And I still contend with the middle two who might start screaming, necessitating my stopping typing to go find out why there’s a problem.

I have run out of steam. It’s actually not that easy to be bright and cheery when you’re in severe pain every day if your life. Imagine that!

It’s not possible to bask in the joys of motherhood when life, behaviors and reality show you that things are not improving in any sphere. How do you extol the blessings when you’ve just been pushed and pulled by one child, one hides urine in her wardrobe and another is screaming because she has been offended by something that is actually not offensive to us normal folk and your body and mind are weary from faking being ok all day.

I can’t enjoy homeschooling when I see how far behind some are. Not only because they aren’t progressing despite being in grades lower than they should be, but because assessments show they are lagging more and more behind the older they get. Ie, their development isn’t following a curve even if still below average curve. It’s a straight line of “Sane as it was three years and three years ago it was already bad performance for their age.”

I have run out of joy. I have run out of happiness. I can no longer create them. I can’t type what I’m not feeling. I wanted to encourage, but I am discouraged. And next year looms even scarier with even less “help” than I have NOW. And right now is not enough.

And so, I stopped my automatic payment for this blog. Next year March 25, it will cease to be. Flydah, my commenter and reader, knows where to find and often does find me there.. There where I find her too. And with her, I can be real about every single heartache.

I hope for a miracle. Maybe one day I’ll come back and will have found an affordable centre for all my children so that I focus on trying to take care of myself and the cooking etc only.

Until then, the burden weighs too heavily for a blog. Who wants to get a daily dose of a downhearted mother?

I’m waiting for the ashes to become beauty.

Till then…

I bid you farewell – for now.

Stolen Money

Grace by any other name1 Comment

I am desperately trying to find educational, or more importantly, therapeutic centres for my children. Places where they can wear what they need – instead of being bound to a uniform of specific lengths and material.

I am desperately trying to figure out how in the world next year will look. Paying for two university students is no joke. We have no clue how that will work. Paying their mortgage for the townhouse we bought them in a secure complex- how will that work out from our budget?

Oh. No. Let’s go back.

We haven’t bought an apartment. We tried to buy scammers stole our deposit!

The ‘estate agent’ sent through the correct offer to purchase documents showing that the seller had signed after we signed. And sent bank details for the documents.

Only the next day when she asked whether the deposit had indeed been paid did my husband notice – when she again sent proof that she had sent the bank details so didn’t understand why we hadn’t paid-that her email address was not correct anymore and neither were ours. The thieves had swopped a letter here and there so it looked ok at face value. But it wasn’t ok. The money had gone into their account.

This was last week Thursday night and we are still waiting to find out if we can get our money back. He went to sign an affidavit with the police. Then got a case number and the agents have done their portion and have spoken to officers on their end. And now, we wait. The bank knows.

So let’s PRETEND the purchase has happened. How will we pay their mortgage, our mortgage, their pocket money, grocery, laundry soap, crockery, cutlery, etc etc , internet, university fees, car repayment, car insurance (We’d hoped they’d each have a car but they’ll have to share) and all my medical costs, the kids’ medical costs, anything that comes out of the blue and our own fuel as well as the teens’ fuel costs and all other costs?

And that is why I am stuck.

I can’t afford to hire a proper au pair. Those people charge an arm and a leg. Might as well be sending two children to an expensive learning centre- something we already can’t do now, even before the teens’ leave. I can’t pay rent for someone to live close by and also give them a salary to be my assistant teacher, to be my children’s supervisor and watcher and nappy changer and bather. And I can’t build a granny flat in the yard because that too is too expensive. We would have little to eat, and nothing left for my medical needs.

I am stuck.

So, so stuck.

The only thing I can do is cry out to God. I’m in abdominal discomfort from the colonoscopy and gastroscopy. And I’m tired. So, so tired. The screaming, the pushing, the pulling, the soiled toilet seats soiled by an almost ten year old girl, the screaming, the nagging, the sentences I must reply to even though I know they won’t even make any sense so I won’t be able to answer them anyway. The constant busy-ness, the planning, the recording, the sitting, the pain from sitting and recording, the editing, the lack of time to get everything done in 24 hours and still sleep. The pain, the limping, the heartache at each child’s specific problems, the wondering, the anxiety, not knowing what to aim for, planning for more assessments, appointments, traveling, fuel, knee pain, hip pain, fatigue just from folding a t-shirt, arms too tired to fold more. The ironing, the picking up bowls, more bowls, cups, cups inside, cups outside, the laundry, more laundry, bowls in the garage, bowls on the grass, spoons in the drain, toys on the trampoline, socks missing partners amongst the flowers, sharp knives mysteriously found outside, crying, bowls on beds, split raisins, spiky milk, hidden old food, money food hidden in my car, pulling, too much eating, worrying that our non speaker will die from obesity related illnesses, fear that she will kill me one day, hating that I can’t take all the children out because she spoils their joy, hating that I can’t take any children out anyway because of my body.

Toilet. Can’t use the toilet in peace. Teen son comes to ask. Talking twin daughter bangs and screams. Shouts and cries. Non-talker screams and cries and if I dare forget to lock and I’m in there to use the loo and make a call in the relative quiet of the bathroom, she comes in, pulling me, pushing me, then giving up and sitting (very heavily) on me..on the loo. Open the door, children waiting and waiting for me. No peace. Night means research, planning, preparing, editing, recording no, reading aloud, searching for extra to add…

Hoping..hoping the children get back safely from their nature trip. Sad. Unseen. I have nobody here to speak to, cry with, plan with, seek help with, hug me, comfort me, pray for me, wish things were better with. I have to be strong. I’m the only mother, the only parent they have most of the time.

I speak out my fear of the future to an adult in the house . “They won’t be like that.” I get told And I think, “ They are already like that now! But I’m the only one who lives it day after day after morning after afternoon after evening. Can anybody hear me!??”

I am sad.

But I am never going to be broken.

The same woman who sent this message below when I cried out into the ether, is one who too will never allow herself to be broken by any human out there.

I may never get any rest while living on this earth. But I know who will be extremely happy that heaven has come at last and I can finally have the rest I never received on earth. One who will rejoice with me and for me. One who feels for me with all her heart and soul.

I am sad. But I am not sad alone.

I am thankful for technology. And I know that unlike many who make empty promises, this message writer would deliver, because even without making any promise, she just gave. Freely, willingly, of the VERY little she and her precious family had.

I’ve had people not only love me, hear me, but also care for me, sacrifice for me. Cook for me, walk at nine o’clock night to go find something, anything that would stop the violent post-op vomiting that wasn’t stopping.

I used to ask God why He let me give so much- time, energy, prayer, thought, care, worry, money, my own clothes off my own back, food, blankets- yet never receive the same love. What was wrong with me that people could use but never love?

Nothing.

He was just waiting for a time when I would need it the most, for a time I’d appreciate it the most, when words would be just as heartfelt as actions. That time is now. I am on my knees. But I’m not alone.

Video School!

Grace by any other name1 Comment
Jumping with excitement over glitter glue!!

But first, let me share a bit about school work. Someone commented so positively about how committed (or something like that) I am to a project I’m currently doing on YouTube (Studying the book Adventist Home) despite everything else I’m doing.

It meant a LOT!

So, here’s a snippet. My PDA daughter is VERY hard to teach. Interesting..She is truly a version of her mostly non-speaking twin! She does what she does, but differently. Both girl won’t sit down and discuss or be led in discussion or even naming items in a book or on a screen. I can’t teach like I do my other children. And my other children are already harder to teach than my first children. At their age, I could plonk a textbook in front of them, cook while they answer and then go through the answers with them. They were self teaching as soon as they could read. And they read at age four and three. We could do crafts with ease. Snakes looked like snakes. They understood verbal instructions and had hands that cooperated with their brains and with my instructions.

Today, it’s difficult. So difficult. I frequently regret doing crafts and these aren’t even difficult crafts. I do much of the work myself and even then, they can’t stick things down well. They don’t know how to place ladybug legs … And it’s all different children with different problems and only one of me.

Can you tell I’m burning out??

So, back to my ‘newly diagnosed but long known to us as our fourth autistic’ four year old. She had occupational therapy this week! The first time ever!! Some celebrate “First day at school,” I celebrate being able to attend therapy. Something my most desperately in need daughter can’t yet do. She was excited but nervous.

She had had a headband on. When it was time to go, she asked to wear a blanket on her head, held in place by the headband. And this is an adult sized blanket she was talking about so I said no. She did the next best thing. Took a hat, put it on, put the headband on the hat, took a teddy and took the blanket. Armed and ready for war!

Thankfully, she enjoyed it. She enjoyed being “asked questions and playin’ a lil bit.” So, we are set for the next session.

As for home education? I’m back in the thick of hectic vision therapy exercises. Too many, people. I’m not well enough nor have enough time per day. So I’m doing something daily. Just nitpicking every single exercise. But, such is life. My girl can’t sit still when I’m talking, doesn’t listen, tells me she’s bored…

So, given how well she concentrates when watching my Bible story videos, and how well she recalls things I say, I decided to look at the upcoming topic, record myself (try finding peace and quiet with six children!), edit it, add visuals to explain things that might be new to her, add movement breaks either led by me or by online videos I edit into the video, THEN teach via the TV. Sometimes, I add songs. So I first have to find relevant songs -unlike the Bible videos where all the scripture tunes are made up by me- and then learn them and then find the karaoke version and sing along.

It’s a lot. And that’s just one subject.

But it’s rewarding. The peace and concentration is amazing. And the middle two get to learn with her as we watch.

I also did the below for them, which they’ve watched a few times. This was just a general education video I made up for them, not part of Neilo’s Science curriculum.

My title. I’ve had tummy troubles. Began with pain last week and has ended (thus far) with a case of the runs. My rheumatologist wants to be prudent so I am suddenly booked for a colonoscopy and gastroscopy. Something I didn’t want any time soon! The pharmacist said there’s a stomach virus going round. Given how I ended up in hospital for the vomiting one, this might just be the current bug and nothing worse. I hope it’s not a Coesntyx side effect. I want to give Cosentyx a shot at working. But it’s best to be prudent. If my NSAID or Cosentyx has caused an internal problem, better to figure it out soon.

And so, as the evening wore on today. and I felt guilty that I hadn’t done therapy, I called my middle two and made them do one each. I laughed when my son then asked if I wanted to see something he’d made. I replied, “No.”

This was unusual and never happened before! They both froze and said, “Huh??”

It didn’t compute.

“Mom always cares about what we’ve done.”

I giggled at them and then allowed my boy to surprise me with his “robot.”

You can definitely see what it is without my having told you what be created. 😉Right?

I love how proud he was of it. May they both ever be sure of themselves.

Waking Up

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What it’s like (for me) waking up in the middle of the night.

If you happen to be on your back, you feel terrible pain in your neck. As you wake up, you realise it’s also in your SI joints, then elbows and hands. Every finger feels like it’s on fire and your elbows like someone is smashing them with a hammer. Your knees protest, are stiff and painful, and when you try to move your legs, they shout NO!!! Then you realise that your knees have also joined the cacophony of pain…

If you were on your side, the shoulder and arm you were lying on are screaming. Your knees too. You shift, but the damage has been done. Your pain refuses to dissipate. Your neck joins in as your stiff fingers also make themselves known You shift, but the pain refuses to leave.

And hours later the pain does react a bit and you sleep again. Or it doesn’t respond And you stay up from midnight to the next day, trying to function despite falling asleep while reading aloud to the children durinhg the day.

If your husband is in town, you lie awake, desperately hoping he will soon wake up so your pain meds can be taken without feeling guilty for the noise they make (extras because I’ve taken ‘all’. Jjumy meds throughout the day.)h

I can’t wait for these to pass. Every single day pain wakes me. Hmmm

We Did It!

Grace by any other name1 Comment

All of us did it! Every sister who asked almost every single day how the day went, if there was any improvement in the children’s challenging behaviour, if I was able to sleep (No), if the twins slept (We’ve double diapered Reo and she’s been quiet. And so, her sister has also stayed asleep.) Plus she’s on meds that help with sleep. Oh yes, that.

Let’s get to that first. Last Monday, I took Twin A, Naynay aka Neilo aka Oreneile for an assessment. I’d filled in the Connor’s questionnaire as her teacher and my husband did the “parent” one. I also did the M-Chat assessment. I added all the observations of autistic behaviour I’ve made over the years, and emphasised the current challenges- I can’t teach because she interrupts me, she thinks she’s also the teacher and takes over, her violence that comes extremely unexpectedly when nobody is even doing anything that should cause harm or she has not asked for anything we have denied… Her irregular speech errors, “What are you going?” instead of, “ Where are you going?” And, “Where you went?” And, “What are you doing a?” Or, “What are you doing the?”

The extreme hyperactivity and inability to focus. Insisting on doing formal school work (We believe in delayed academics), but saying the work is boring and moving pages ahead, or doing her own thing like writing letters on a page teaching her letter recognition when nobody told her to. Her taking over and teaching ME… And her interrupting her siblings as they learn.

I mentioned the excessive role playing. She don’t play pretend, she becomes a character she has learnt about and is that person in her head. “I don’t want to wear a top. Pharaoh doesn’t wear one!”

That day, she decided she was an elephant. I didn’t even try talk her out of it. It was (is) part of her constellation of symptoms, after all! And after her head was messed, weight taken (She hasn’t ever seen him. She doesn’t get doctor sick, she goes big/breaking her elbow jumping on her bed and then her arm the following test jumping on a trampoline and falling off both times.) She has horribly changing moods-laying out and hurting others for no discernible reason after having just laughed with them. Very sudden and distressing.

I also mentioned her prodigious memory. She had the memory of an elephant!! Can be so caring. She kisses my back and prays for me. She tells me to rest. She tells me to lock my bedroom door so her more violent sister doesn’t come pull me everywhere and anywhere, stacking me when I can’t give her what she wants.

After an hour observation, talking to her, talking to me, witnessing her busy-ness and sudden requests to wash her very clean hands, everything showed that she indeed she has autism, ADHD, extreme pathological avoidance. I was shaken by the word ‘extreme.’ I guess in so used to everything being too much that I didn’t realise it really was too much! Every single child is on the extreme when it comes to behavioral challenges that leave me so tired and alone that I b never paused to think, “Why is out PDA so much worse than it could be?” It’s more the older two who exasperate me because I know things could be better, they would be helpful if they were neurotypical and their actual age developmentally. Why suck ink and spread it everywhere on the floor, on your vest… Why throw clothes out the window and make awful messes every single hour?? Why resist so much? Why the screaming? Why does their sister pull only me so much and.. and why can’t I ever REST???”

We’ve begun on a very small dose of ADHD meds and mood stabilizer which also happens to boost sleep. Both girls are on melatonin, SleepVance but we were still struggling. Waking up for HOURS and being loud about it.😆 She’s also on allergy meds as us her minimal talking twin and minimal talker is on another med that send to help with sleep as well. We shall see how to shift things around. So far, no positive change in her behavior.

Back to us! We did it! Yesterday was injection day again. My regular commenter who once sent money even keeps track of the days as the injection day draws in. I’m the one sticking the needle in, but they are the ones who show care and concern every single day. The one who listens to my cries when in do open up. We did it! Four straight months-NO STOPPING!!! )With Enbrel I never even reached two months!

I don’t know yet if it’s starting to work. This just could be the end of a flare and it will become extremely bad again. The fatigue (extreme exhaustion and wanting to lie down began again yesterday after a few days of my having to remind myself to calm down because doing too much would trigger n more pain the next day.) But.. I had a better week where I didn’t beg to die and pain meds actually did reduce the pain a bit. But since yesterday morning, that has changed. Still not bad enough to wish to die though, so I’m pretty chuffed for now. Praying I get better. We got to a whole four months! Thank God for that privilege! I hope this is the treatment that shows this all down and helps my lungs and kidneys too.🙏🏾❤️

Heritage Day Yesterday

Grace by any other name2 Comments

And it coincided with my son’s birthday, the one whose heritage we don’t know.

My daughter’s birth mother has no idea how blessed I am to have her. To answer any questions, to explain something and to just be a big sister to her. I like to act, give, care and better yet, I have another young lady who is extremely invested in birth mom’s future and that of her children and grandson. Seeking bursaries for her teen daughter’s education next year, looking for anything that can help earn money, like learnerships..though time is now too short so daughter is now aiming to go to university next year.

But what about Micaiah? Where is the woman who gave birth to him on September 24? Is she ok? Did she have more children after him? How many did she REALLY have before him?? Do I pass her in the mall? Is she one of those who goes hunting for expired food? (Three people were shot dead and fed to pigs recently. A company dumps its expired food near a farm and a mother and a married couple went to pick what they could find in the farm boundaries. The owner shot them (allegedly) and told his workers to feed them to pigs. There is terrible suffering in our country. I know some who are that close to starvation that they’d give their lives for expired food. Is his birth mom still on the brink as the social workers claimed she was? I wish I knew.

For now, I’ll celebrate the boy I have, who I have raised since he was four and a half months old. A boy who has brought me to tears because of the horrible challenges he has faced. And who has made me laugh at the weirdest of misunderstandings and random use of highfalutin language when he clearly doesn’t know the meaning of the word he’s just used. I am so thankful for his presence and his life. We have more difficult years ahead of us, but what I love for him, is that he doesn’t know it. He is happy.

His little sister- age four- was trying to write number ‘eight.’ She failed once, I held her hand for three more and then she did her own two that were clearly recognisable as eights. My son noted later on, “Hmm, and I still can’t write an eight!”

No self pity. Just a fact. As if he’s proud that she can do what he cannot. I hope that that lack of concern lasts his entire life. He deserves as much of a happy go lucky life as he can find.

Happy birthday my boy. We are blessed to have you in our family.