Author: Grace by any other name

God-lover

Distraction Time

Grace by any other name1 Comment

I stupidly tried to sleep on my tummy. Bad mistake. My neck doesn’t like being turned. Nightmare woke me as usual as the pain reached a crescendo. Hey, it’s better than when I forgot to take the pillow away. I woke up with my right arm down to fingers paralysed, totally convinced that the arthritis in my neck had now permanently damaged my nerve, imagining having to tell the rheumatologist and get more testing.

I’m tired of the testing.

Then I couldn’t sleep. (It’s currently 3:47am) I, even more stupidly, then read the news. An obese journalist died young. Was she dealing with thyroid problems or other health issues that caused her to be obese? She’s younger than I am… Then again, look at me. I had foolishly (See a theme?) hoped I could stop my anti hypertensives but nope, after a few days of not using them, the Rinvoq induced high blood pressure returned and I had to start them again yesterday. So maybe we are both as unhealthy as each other, thanks to AS. My children’s dad did say so helpfully on Sabbath, “You’re going to die. I’ve been listening to a book about sleep. You’re going to die young. You’ve never slept in all your life.” Yeah, very cheering. Especially as it was after I came across research stating that just three NIGHTS of bad sleep raises heart attack risks.

Change topic.

Oh, but now I can’t breathe well. Why didn’t I use my inhaler last night? I’m just tired. Tired of all the medicines fighting the disease. Tired of the medicines fighting the medicines fighting the disease- including the esomeprazole fighting the anti inflammatory impact on my sick ravaged eaten away stomach lining. Tired of the Rinvoq constipation making IBS worse so now I take Soflax tablets for THAT.

Tired.

Then I saw how many people have been shot in the past week in our city. The innocent children, the baby, the taxi passengers, the gang violence that is so endemic.

Shared a status about how THAT triggered the “It could have been me” feeling I had when I was about 11 or 12 years old. The Mowbray Golden Arrow Bus Station was close to the taxi rank. Depending on how long the taxi line was, whether my taxi was there, how long the bus queue was and what time I’d arrived there in Mowbray after walking from school in Rondebosch, I’d then choose whether to take a minibus taxi, or the bus.

One fateful day, I decided to just take the bus I was tired. It was there as I arrived. I didn’t feel like going further down to see how full the taxi was or how available it was. Then the bus kept stopping to let people off and on. So much slower than the taxi. But then, as we drove towards Gugulethu, passing through Gatesville, one of the taxis I usually took was stopped. Nobody was moving around. Shops quiet. The driver was hanging out the door held by his seatbelt. The middle passenger had been someone’s relative. Now she was a dead lady with a beautiful perm and an ugly bullet hole in her head. Head blown backwards by the force of the bullet so we could all see the entry wound from our high vantage point in the bus.

Silence.

Fear.

Heartache. I imagined that she was a kind loving mom and now her children would be wondering where she was. I will never forget that scene. It is as imprinted on my mind as the fear when at 16 as I walked to my cousin’s funeral, a gangster who’d been shot in the head, a youth holding a gun came out a house in front of me and I had to walk behind him in abject fear that he’d suddenly turn around and shoot me dead.

Ok. The news was not a good idea.

No sleep.

Too much pain

Chest wheezing.

Time to think about something better. Ok, before that, let’s get the inhaler! I did promise Ammy that I was taking care of my lungs. She had a bad night two nights ago because she heard an ambulance in the night and then thought about me dying and couldn’t sleep again. What compounded her fear was her imagining my collapsing, having a heart attack and dying. Somehow, she links that with the most recent SI joint infiltrations (those deep injections they do into your SI joints) that had – by the time I had driven myself home all the way from Durbanville- made my legs numb so I was stumbling and falling and all three little ones had to hold me up to get me to my room and bed. That traumatised her. She was scared I would fall down a section where we have two steps, and die.

Ok, yet another reason not to try those injections again. Plus the mild pain reduction wears out and they ARE bad for the joints they penetrate.

Ok… That’s again not a positive thought! Hey, the inhaler is working now. Less wheezing but chest sore.

Ok… Really time to dig deep and try pretend I’m not in pain. And no loud noises from my spasming intestines. What can we think about?

School!

My crazy five year old!🥰

I came out the bathroom where I’d been convinced I’d heard her father shuffling around, and went to the front to go start her sister’s braidlocks. Yep, I am trying for the very last time, to get their locs re-started now that their hair is more grip-able. I’ve begged them to never cut their locs ever again. I’m tired. Loose hair? My natural (read-EXPENSIVE) hair potions are used up in a day. My cheap ones, mixed with water for some reason! Put their hair in cornrows? Ammy fidgets with her hair and it looks terrible within a few days. Do wool braids? They style and re-style and do such tight styles that there’s way too much pulling and they’re too young for the traction alopecia nonsense. The missing hair line… Injibhaba in isiXhosa. (Don’t ask me how to type that. The only Xhosa reading I did was the Bible and the hymn book. Those don’t talk about missing edges!)

Got out there, and Nalo called me back to the bedroom to show me what she’d been doing while I was in the bathroom.😅Back I went, leg and hip burning. She was so proud of herself. “I did Maths! Come see! I did Squeak and Scratch!” (Two squirrels who needed five acorns each.)

“See!? Look! I sat down and I did three plus two! It’s incredible! It’s so amazing!”😂😂😂😝😝

“And then I did THIS dangerous thing! The chair was shaking when I was holding on and my feet were up! Ooooh!”

She killed me with cuteness. She is in love with maths. (For now!) Like many children, she loves kinestethic methods of learning. But she loves numbers in general.

I wish we could bottle up her joie de vivre! It would give us so much energy and joy! Life is good for her. She eats, she does school, she talks and sings a LOT during school, sometimes singing the words she’s meant to be reading, or singing the numbers she’s counting…

We could all do with such happiness! We need it.❤️

AS, High Support Needs Autism, and the OT

Grace by any other name3 Comments

Ankylosing spondylitis won straight out the bat when I got to the OT’s home where her practice room is. The room is up a steep set of steps. Each step extremely tall so you have to take a big step. That .. was.. torture … Just driving there and climbing up the stairs made my leg and pelvic area scream, “Are you serious!? Don’t you love us? Why are you torturing us?” I almost fell. My legs can’t take my full weight when shifting onto one at a time. They just wanted to collapse.

Then I sat with the stair pain. And the OTHER hip that had not complained about the stairs and driving decided it wanted in and kept interrupting my mind, “Haha, you have AS! You’ve got burning pain. Do you feel me burning you?” So I sat on one buttock. Didn’t help much, the leg was still bent.

The OT herself is lovely. Belinda von Wieligh. Her room is small, which is perfect for my girl who doesn’t really like wide open spaces. BUT, therapy (DIR floortime method) would NEED me and dad, or at worst, me, present the entire time, every session. Doing things while she watches and directs and if my girl goes to her, then I watch and take part and the best would be if she wanted us all to take part.

Nope.

My rheumatologist doesn’t even want me teaching and neither do I, as you know. I’m just teaching because I have no choice. I’ve implemented some DIR floortime tips and they are too difficult. Too heavy on my body. No way I could drive there, climb the steps and THEN have to do it all in one session. My rheumatologist herself would murder me! If she is so desperate that I stop reaching that she looks for schools and talks to teachers for my children, there’s no way she’d rejoice that I’m punishing my body.

Dad? He does NOT take directions kindly. So he’d be a bad client. And he said so himself. She said she’d tell you stuff via voice note after the session like, “ Oh, when she hit you, you didn’t realise she’d wanted the other blue thing when she pulled you to the red one.”

So, I’ll stick to the usual plan. Try fit in the method here and there and get her dad to do it. One was to do something they like and get them to communicate. So, I would pick her up and say “Up!” And then put her down and say, “Down!” And continue for a while then suddenly stop. And as expected, she then said, “Up!”

Below, she took the chairs from around the dining table and put them together and then pushed us all to fill every available chair. No leaving! No toilet! The girls eventually got bored so I started singing, “ If you’re happy and you know it” and she clapped and stamped her feet a few times. To which her twin shouted, “Oh. She’s making a nice show for us!” Whatever you want it to be! If you feel you’re at a concert, all good.🤣

Communication. I explained how she wants to speak. But speaking is hard. Floortime wants you to meet the child where they are then try get more out of them than what they currently give. I did that on Thursday without hurting myself as much as I would in an OT session (The rheumatologist seriously sat there and asked if there’s anything else I’m lifting after I promised her I do NOT bath any child. My back is bad. It scares me.) She wanted yoghurt. Pulled me to the fridge to open it. I labeled each item except for the yoghurt. My back was becoming sore and she needed me to get it as it was on a high shelf. She just kept silently pulling my hand up. I started getting scared she would end up screaming in sadness and frustration and almost, almost got the yoghurt for her. But then, as I was standing there and the fridge kept making its warning sound that the door had been open for too long, she finally said, “Yor-gut.” Whew! It was traumatic. I can’t do that over and over. Showing me is a valid form of communication. BUT there are things she can’t SHOW. And she only wants to talk. No pointing at pictures, no even looking at pictures. And that’s the sad thing. Her words mostly come out when she’s feeling strong emotion. So it HAD to build to a level where she was getting frustrated. I am hoping one day things are better. Less strain needed. It’s too hard on my Mommy Heart.

I also hope that one day she will understand what pain or sore or ouch or owie means so she can then gesture yes somehow. For now, we have to keep guessing why she’s upset, crying more, unhappy, restless …

I’m sad I physically can’t do OT. But I have the textbook. You can buy the videos and learn. They’re just expensive. But hey. Such is life. Never will everything move smoothly no matter who you are. This is just one of my rough and permanent patches.

Shabbat shalom. If you’re having a ‘Sabbath,’ enjoy the rest and peace in worship. I’m hiding in the toilet. 😅

The 16 Year Old

Grace by any other name1 Comment

About ten or so years ago, a 16 year old girl (Also Black and Adventist), got in touch with me because she loved the love I have for my adopted children and she too had been adopted when she was three years old.

I asked her what advice she’d give me, as the only people I can truly learn from, are other adoptees. She said I should just tell them over and over, that I love them and that I’d never leave them. She said what she has felt, is a huge fear of loss. Scared her parents would leave, and scared her boyfriend would think she’s not good enough. Scared enough to do things for him that she wouldn’t ordinarily do. But she was scared. If she wasn’t worth keeping, fighting for, what if everyone else also thought so? At the same time, knowing her parents CHOSE her was a huge blessing and she loved them with all her heart, and feared they couldn’t tell how strong her love was for them. Also, she got scared that if she was disobedient, her parents would get rid of her, so she tried to be good.

What an exhausting life. And it is something the adoption agency we used did NOT mention. I’ve seen so many American agencies touch on this in their websites. They mention how even when adopted as babies, there’s a strong fear of abandonment and loss that adoptees have. Our social workers always looked at it from the angle of infertile parents. THEY mattered. And only them. So it was about how THEY were finally “paper pregnant” and about to get their brand new “own child.” The only difference between an adopted child and a ‘biologically theirs’ child would be that the child would very likely be from a different race. The ‘support’ offered was hair care groups and a very surface level discussion about how to discuss having different skin.

Not on. Adoption is a miracle in terms of raising an innocent child. Children are miracles But that child has lost something. And it has emotional ramifications for MANY of them- if not not all. The only angle was what to do if the child was virtuous about where they came from. And the advice was to tell them to wait till age 18 and then see if there could be a meeting, though one admitted stalking her child’s birth family on Facebook and told the child they had a nose like one of the parents. Nothing about emotions.

And thus, we come to my older adoptee. She has made it very clear that she feels I’m the only adult in the family who loves her wholeheartedly. She has made it clear she worries about me, telling her occupational therapist that too. She has told me that she is scared I’ll die and then she will feel “alone.” But I didn’t realise how deep that fear was till I was sitting with her teaching her earlier this week.

Far away in the distance, an ambulance siren was going off. I didn’t pay attention to it. She said, “I wonder where that ambulance is going.” I told her I wondered too, then tried to continue with the lesson. She then said, “I’m glad YOU aren’t in it.” I told her that hopefully whoever they were rushing to fetch. or rushing to hospital would be fine and I was glad too that it’s not me. Then she continued, “I’m really happy it’s not you. When I hear an ambulance, I keep getting scared that it could be you in there.”

Whoa! What? Every time? That was deep and so, so sad. That’s a lot of fear she lives with. I told her that I’m here and do not plan on ever needing an ambulance. I have never needed it and hopefully I never would.

Fear. Fear of loss. Fear of losing your adoptive parent. Not uncommon at all. And it apparently gets worse when they hit adolescence- exactly where we are now. At the cusp as her moods swing and her body develops. Textbook fears.

More adopted adolescents than non adopted , attend counseling and therapy. There are many reasons, obviously. But one is the anxiety they live with.

All I can give are silent reminders that I love her and not about to keel over and die. Her love language is hugs, so I dole those out often and long. I send her random notes. And remind her that I want to be her mommy for life. And in brighter colour I see the question she asked me after I saw the rheumatologist last month. “What if you are hiding that she said you are going to die? How do I know you are telling us everything? Are you sure you’re not dying?” Can you blame her? She sees the tablets. She knows when I have blood tests. She sees the inhaler for my AS-impacted lungs. She sees the limping. She sees degradation and dying.

💔

Many children have this fear of losing a sick parent. BUT,

MANY MORE adoptees have it even when the parent is not sick, and it lasts longer and is stronger than typical fear. All encompassing anxiety. Maybe she’s scared I’m going to die from over working and that’s why she keeps telling me to go lie down when I have to cook, or medicate them, or get them to tidy up… By the end of the day I am now unable to hide the pain and fatigue. But I can’t not care for them. And so.. She worries.

I hate AS. It creates extra problems we don’t need. More on THAT next time with the post on my sad OT cisit for my non-speaker. This post is about my ten year old. And any child you or a friend has adopted. Extra love is needed. Extra reassurance. And it’s a pleasure to give it.

Is That Possible?

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AS is basically like have a flu that never heals. And I mean real flu, not a cold which many refer to as the flu in Africa. A real, honest to goodness flu. The type that can kill you.

If you told me you’d come down with the flu, I would never end a WhatsApp conversation with the sentence, “Enjoy your day!” Yet that is exactly what someone who ‘knows’ how stressful parenting my angels is 24/7, and knows how unwell I am, said to me.

I give up. I have given up. And it reinforced why I only answer with, “ I’m surviving” when they ask how I am. They don’t listen. Don’t care. Don’t hear.

Pretty please, if you know someone constantly in extreme pain from toe to head, fatigued and unable to reduce the pain ke rest, do not tell them to enjoy their day. There is nothing in that to “enjoy.”

People are saying in news articles articles that that woman from TikTok who shot her dying husband multiple times before two out of three of her children and then herself, had help. “She should have turned to her friends and family,” they say

There is nobody to turn to. Everyone is living their own little lives on their own separate island. I don’t know what real help her family gave her. I don’t know if her friends could have saved her from the terrible thing she did. What she did boggles my mind, frankly. Why? If YOU can’t handle something and you want to end it, end it alone. Now there’s an innocent and confused three year old who is missing her family because her mother decided she has the right to decide who lives and dies.

And I think that’s the tragedy. Those of us with stronger ethics don’t do anything drastic enough for the world to see we needed help.

But oh…We need it. And nothing reminds us how alone we are in our suffering than a nonchalant, “Enjoy your day!”

21:18 Special School is Cool

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Done!

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.

WhatsApp and..Bras?

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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.

❤️

A Big No

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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.

But…

At least they’re all quiet for now.

Maybe I’ll get a BIG “yes” soon.

Creating Awareness?

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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.❤️

“I Hate Your Life!”

Grace by any other name2 Comments

Amarissa (age 10) told me she hates my life.

Let’s rewind.

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.

Giving More Than What We Got

Grace by any other name1 Comment

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!”

South Africa is interesting.😆