Author: Grace by any other name

God-lover

Prison Time?

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The homeschool furore has nothing and EVERYTHING to do with race. The powers that be are Black. They say that homeschool parents are keeping their children out of schools so they don’t have to mix with Black children. Their response has been to come up with a new Education Bill. One of the proposals is to put home educating parents in jail if they don’t register with the education department. IF they approve your homeschool registration, they want to oversee what you do. They want you to have a schedule with school times that have to be of a certain length each day, they want you to keep your child’s school records for three years, they want to assess if THEY believe your home is ‘suitable’ And they want YOU to hire an external assessor to come every year and test your child. And of course, your curriculum must be according to their standards.

Nope! Must homeschooling parents didn’t register their children even before prison was mentioned. Some parents who have registered have had no response for up to two years. Some have had officials drop in without warning. One was told she couldn’t use the dining room table because the light wasn’t directly above it. Of course, some have had things run smoothly, and others don’t care that strangers pop in randomly. But the rest of us do mind.

My children have never used the South African curriculum. They’ve never been assessed by anyone external and yet here my teens are, with an A average (so far) for their official Cambridge exams. There’s no NEED for someone to assess the children. The parent knows full well what strengths and weaknesses they have!

On the opposite end of the spectrum, are my special two. They have significant barriers to learning. My entire formal school day for them is 30 minutes long. They can’t handle the length of time the government would want them to have. They’ve incidentally begun the academic portion of their assessments -today is the final hour- and the psychologist told me that even that hour with different activities was too long for my daughter, she got “tired.” That’s exactly what I’ve heard from other therapists too. If an hour of varied activities is too long and wears my girl out, what kind of torture would I be putting my child through by making her sit and write for many hours a day?

My son apparently found some of the activities “terrifying” so she had to stop and just play with him. Impossible to do under the government guidelines. She said he was very hard on himself, scared he would fail even though she assured him that he wasn’t being ‘tested. ‘ (My teens are writing exams. Maybe that is where he’s getting the idea that exams or tests are pas or fail and that failing would be terrible. My children carastrophise a lot.😅)

The whole point of home education is flexibility-meeting the child where they are and tailoring their education to suit THEIR needs, not government standards. It’s not like the government will pay for therapy when our children are burnt out from too much pressure.

Also, this would mean that I’m paying someone to come tell me what I know. “My children can’t handle mainstream education.” That’s a huge waste of money! And imagine how stressed they’d be having some stranger doing typical exams with them.

Nope.

Might as well cuff me how. My children’s hearts and minds matter more than government pettiness. And yes, not a few homeschooling parents ARE racist. Most of them ARE White. But they aren’t the only homeschool families in South Africa.

I’ll have to face jail time before I change my flexible, child-friendly homeschooling programs to “doing school..at home.”

Another Win

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I need to give the office manager of Dr Greg Paulson a shout out! Since Friday, I’ve had a red eye, and I was paranoid. Just last week the rheumy had asked if I had any eye issues and I hadn’t…Till Friday afternoon!

Google told me that “left untreated,” uveitis could leave me blind. Except, what if it wasn’t uveitis? So I waited. I knew uveitis would feel awful quickly, but I also have a high pain threshold, so I wasn’t sure if I was just tolerating the extreme pain better.

Sunday, I tried to find emergency opthalmologists on our med aid network but there aren’t any. I debated going to Trauma, but when I’ve taken my twins for eye issues, they’ve just used a normal torch and I knew you need to test pressure too. So I didn’t go.

This morning, I started looking for available opthalmologist. Wouldn’t you know it, like too many specialists, the ones I got through to were only available in June. I’d be blind by THEN! And this is where Dr G Paulson’s right hand lady comes in. She phoned me back with MANY other options and told me to go to Trauma at our closest hospital and who her opthalmologist that’s there, would check on me. She gave me alternate numbers… She was amazing!

One of her suggestions was a Dr Mouton. I was told that he was fully booked, but that she would take my details down. “You have anky what?” Needless to say, when the opthalmologist heard, he wanted to see me asap.

And so I went!

He is a breath of fresh air too! So personable and kind. I told him how guilty I felt taking up time without an appointment. He reassured me that it was urgent and that it wouldn’t take too long. Thankfully, two patients decided not to pitch so we both rejoiced! Now I didn’t need to feel bad for making some poor people wait and wait and wonder why they were waiting so long!

Scleritis. Similar to uveitis in terms of possible blindness but not as extreme with regards to pain and where the inflammation occurs. And like uveitis many of us autoimmune disease people get it. I must continue with my anti inflammatory tablets from the rheumy, and do seven days of steroid eye drops. And take it from there! We had a discussion-started by him-on wonderful African kings and leaders. And he had quite a few patients of colour. He is a gem. I highly recommend him.

And from now on if I have a long wait, though I will definitely be in pain, and would appreciate it if they phoned to alert us about being behind like my children’s paediatrician does, I’ll tell myself the delay is because some very desperate soul had an emergency and had to be fitted in.

My eyes (and bath) are sore, tired and I have a headache. My typos will therefore be even more evident in this post as I won’t be editing it.

I’m scared. I have a swollen wrist and arm about 6cm higher up my wrist. My neck hurt when I reached up to being washing down, gave an audible crack. It’s not turning properly when I’m reversing out the garage. It’s as if my AS is speeding up and spreading more. I don’t like it. Though I began and spent many years on a vegan anti inflammatory diet and the AS didn’t exactly hide like it does for some (before I realised it was triggering IBS flare ups) I might try it again. But I will need some protein that isn’t legumes. What to do. I know where God stands. And I’ll be honest, I tried it. I can’t. I tried anti inflammatory diet with white meat protein and it’s too gross now. I’ve spent too many years not eating anything that moved that the texture, the concept… I don’t know. I need protein. And I can’t have legumes. Husband agreed that someone in my situation needed fish or chicken-free range-but I can’t. I tried and threw it out. The smell, texture and taste are gross for me. I even tried free range eggs and I couldn’t handle those either! 20 years of none of that had changed my tastebuds and tastes. But I’m struggling. I really am. I need to try halt this speeding train. Maybe this time it will help. Or, it will at least reduce the burden, reduce the amount of pain I’m in. I will see.

(I’m on a plant based diet because that’s what Adam and Eve were on and God wants me cholesterol-free and as healthy as possible. Except now I am not sure the wants me to do it and die faster.)

Light IN The Tunnel

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What I noticed yesterday when I shared my wonderful appointment with my new rheumatologist, is that only two people understood that it was good, but not everything I need. The other few tended to act as if we’d found a cure and everything will now be hunkydory.

Not at all.

There is no light at the end of my AS tunnel because there’s no end. There’s no cure. Treatments themselves are trial and error. Already, even before we even TRY to apply for me to get the meds -we’re already in agreement that I’ll need to get a loan- there’s one biologic that won’t be a possibility unless the TB my surgeon said he found inside my appendix, was not really TB but looked like it. Don’t ask me if he still has files from 2001!

But. I still had a great appointment with my new rheumy yesterday! Woohoo!

She was dismayed about the gastroenterologist. Of course chronic gastritis exists! Also, she didn’t understand why he refused to scope me anyway. According to her, if a patient asks for testing, they should provide it, even without a preexisting condition. So, she’s a winner there! She will organise a gastroscopy and colonoscopy with a different gastroenterologist.

She was also shocked by the dermatologist who told me my weird skin issues were a birthmark. I had not been born with them! She thinks they might be psoriasis. She said that once we move onto the (expensive) biologics, if they improve, then we will know for sure. In the meantime, she’s given me a six month script of anti-inflammatory ointment to put on it.

She spoke to me like an equal. Actually, she really cares about us, it’s like we patients are her children. She spoke about side effects, and agreed 100% with why I saw the gastroenterologist! She’s given me the mother of all stomach acid meds, and a daily anti inflammatory for now. But we definitely will need to move onto biologics. I’ll see her three months unless the anti inflammatory affects me, or the scope shows damage

The biggie! She confirmed my research (seeing my old rheumy doesn’t speak!) that all my health conditions are linked to AS. No, that’s not the biggie!

The biggie is that she went back to the very first MRI I had when I first went to the doctors telling them I was in extreme and increasing pain and needed help. This was in 2011. They told me there was nothing wrong and that the pain is because my core muscles are weak so I should see a biokineticist or physiotherapist.

She showed me the MRI. People, I wanted to cry. It was extremely emotional. I, with my untrained eye could see the damage that had occurred in my right SI joint. It was very clear, and so was the inflammation! How could they miss it?? The radiologist AND the doctor saw no thing -apparently! I could see it! My heart shattered into little pieces. All this time when I was crying over the years spent seeking answers, I had thought the MRI just wasn’t showing it at the time.

But it was.

The professionals who blamed ME for my suffering… The physiotherapist who only saw me twice and didn’t touch me, who made me feel like dog poop, dirty, disgusting. For nothing. It wasn’t my core Andy way, so I wasted time and money for nothing.

The nicer physiotherapist who told me my pain was because I wasn’t sashaying enough and needed to move my hips more. All that and more…Like the chiropractor who told me it’s because I carry a child on my hip. (Without asking if I even did.)

It was there in 2011. And as we looked at the January 2023 MRI that finally got me the diagnosis, we could clearly see how the passage of time has made things worse. The bone was jagged and misshaped, now it has been eroded too.

She also agreed with me that I need SI joint injections. Which the neurosurgeon said I didn’t! She cautioned that if any relief occurs, it might only be for a week, but it’s worth it. I can’t imagine a week of no pain in that hip.

She has also ordered specialized hip X-rays which I will have done before the ultrasound guided SI joint injections tomorrow.

We are on the right track! Not only did she agree that it was more than ok to stop the other meds I stopped, but she even spoke not only about my potential meds, but others’ too for other types of arthritis. was super talkative, very passionate, and gets that the pain is horrendous. She was even shocked that I had been exercising as I was!

I am extremely grateful I switched to her. If anyone in CT ever needs recommendations for rheumatologists, let me know! There are White patients who have yelled at doctors, saying they that they didn’t want a doctor of colour treating them, touching them, so be ‘warned’ that she’s Indian with a bindi on her forehead. She’s a rockstar!

Back to the fact that I’m in a tunnel that has no end. She emailed information through on AS. It included exercises to try slow the back from fusing into a hunchback. Breathing exercises to expand my rib cage to try prevent or show down the way it tends to not expand and causes breathing inabilities… And this is with treatment. There is no cure. It is progressive. All we are doing is reducing suffering and inflammation. And hopefully going to slow the disease down.

But, she is the light in the tunnel, and I’m grateful.

My Aunt

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I had a lovely aunt from my maternal side of the family. Gentle, soft-spoken but firm; loving and tender; suffering greatly from the loss of a husband, a daughter, then her son in law, leaving her grandson orphaned, she was love personified.

She was the only genuine mother figure I and my cousin’s wife (Cousin being son to a different maternal aunt) have had. But Covid-19 took her, and our world, our only taste of unconditional ‘parental’ love went with her.

She often used to phone me, just checking on me, on us. Not because she wanted to know how her sister was, but because she loved ME. She never complained, just stated facts when I asked how she was.

She wasn’t well. Bone pain, diabetes complications, heart problems, in and out of hospital, in and out of comas. She suffered terribly. She wished she was dead.

And so, when Covid-19 took her, it was truly bittersweet. Finally, she was free. Finally, she was NOT in pain. No more would her days be either “not too bad” or “awful.” There was no more of a life of “bad” to “worst ever.” But oh, how I miss her. And how saddened I was that she had to suffer before finally dying.

At the start of this year when I was still semi-active on my Facebook page, I shared that finally, after 12 years of trying to get a diagnosis and cure, I got one. Except the disease is incurable and progressive.

Some girl commented, “That’s sad. Oh well! At least you know what it is now!”

Seriously, if someone hasn’t asked you to find them a silver lining for their cloud, don’t do it. Don’t find one for them. Just sit with them in their bad news. In that moment, feel with them what they are telling you they are feeling. I wanted a diagnosis so the suffering would end! Here we are in April and nothing has changed! I just have a name for it now.

I’ve not ever had a ‘happy and healthy’ life. I don’t know anyone in my life who has been in my shoes. Born too early, I was born into suffering. My first ever childhood memory is of me crying in pain after surgery at age three. I can’t describe the exhaustion of being in pain my entire life. I wish I could. I wish so much that I could give a glimpse, give people just a day of what I’ve had my entire life. The tests, needles, operations, loneliness, hallucinations, X-rays, breathing treatments, Emergency room visits. The sufferings I shared with my parents, and the suffering I hid. The extreme pain I didn’t think to share because I thought it was normal. Oh my word. How sad. How sad for the little girl that was me-not telling my parents about the leg pains, the burning, gnawing abdominal pain…They eventually found me rolling around crying silently in bed, which led to a Crohn’s disease diagnosis of seven year old me. SEVEN YEARS OLD. A junior school teacher I never told them snot even after the diagnosis, who seeing my tremendously thin frame asked if my parents don’t feed me.

And so, after decades of the same. Year after year… I am done. I am truly done. If I didn’t have children, it would be very difficult to justify staying alive. When you look at it through cold, hard, non-emotional eyes (Made that up.) , there’s no reason to keep living. I can’t be the person I wanted to be. I can’t visit the sick, I can’t drive to hospitals and find the poor and give small gifts. I can’t be a volunteer. I can’t gos day without pain. That’s kinda messed up. There’s much that I can’t do to be helpful to anyone else. And instead, I cost money and ever will. The costs will only increase. They are only increasing. I’m already going to have to pay over R2000 for today’s rheumatologist visit that a sweet friend remembered yesterday that I’d forgotten was so close. Thought I had a day to go. My ineffective pain pills from the ineffective gastroenterologist already had to be paid for by me despite my medical aid plan.

There is no silver lining. So, don’t tell me “at least” I know what it is. I wanted to know so the suffering would end. It’s not. This is money we desperately need for the children. University is coming soon. The other children need more (specifically my ‘ausome’ ones and ADHDers.) My “at least” will be like that of my aunt-my children will mourn my death, but rejoice that I’m free at last.

I embrace the end. Many of us chronic pain sufferers do. And while we wait, we hope for a ‘better’ day. And we rejoice in those who see us. Who see how hard it is, who cheer us on, celebrate our doing what’s normal for others but almost insurmountable for us.

Death and Autism

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I think I might have mentioned on here that we suspect my other little one is autistic. She is a speaker, seems to have typical development, has definite low muscle tone but nothing hectic is going on. Nothing that screams, “Get a professional diagnosis NOW!” Ok, I’m unflappable so maybe my definition of having isn’t going to be the same as yours. Given I’ve not been wrong with four of my children, I am very sure I’m not wrong with this fifth one. As the psychiatrist said, “I can tell you knew. You just came for confirmation, didn’t you?”

Last week as I looked at her, my heart felt extremely scared. I had this sudden feeling of impending doom and sorrow about her. It happened when some other typical autistic trait appeared. I tried to talk myself out of it. But I just wished I could protect her. I wished for her sake, that she was neurotypical.

And with such high death rates amongst the neurodivergent population, wouldn’t you also wish you could take away the hard parts? Death with all of us. But it’s higher Monday certain populations.. My heart broken last week. First came a headline about a 16 year old girl in a British boarding school who was found dead. Then they mentioned that she was autistic. Then they mentioned that her autistic trait led to her suicide. Oh, my heart broke!

(According to the report I read,) Vodka and a tattoo kit had been found in her locker. And thus she was told she would have detention. A two hour session in front of the headmistress. She couldn’t handle this. She even asked to be suspended instead. Who would ask for a worse punishment? Only someone truly tormented.

But they didn’t pay attention. As many previously labeled as ‘high functioning’ autistics state, the milder designation or label makes it seem easier or lighter. Yes, it’s easier for us CAREGIVERS, but for the autistic, it’s still not easy. Masking takes a lot of energy, for example. Dealing with sensory overload for those with sensory issues must be hectic and traumatic, day after day. This girl smiled for the camera, (Taking a dig at the lack of smile being a typical trait)was into her lessons and post-school activities, and the next day, she was forever gone.

They made the mistake of treating her as they would any other neurotypical child, ignoring that her perceptions are her reality, and that their perceptions were skewed. They didn’t listen.

She even tried to run away from school. How much more could she have done in sling for help!? She wanted to go to this school, was so excited to be there! She would not have normally run away! Why didn’t they understand why? And find a different form of ‘punishment’ if need be? Her reaction should have shown them she had been punished enough already.

But they didn’t hear her. So, she killed herself. And now her sisters and parents grieve forever.

Here in Africa, we have a different case but also resulting in an autism-related death. See, here, violence seems to be the go to response of too many. Mon justice is normal in some communities. This community knew him. They knew he was different. Also 16 years old, they knew him. He would stop and go and help anyone working in their garden, he loved to break things apart then put them back together again.

They knew he was different. Yet when they caught him holding a tap he had ‘stolen,’ they tortured him as they would and do any normal thief or rapist or killer. They didn’t look at how bad the crime was (not), nor did they pay attention to who he was…A 16 year old autistic boy with a future ahead of him. They beat him, threw water at him, electrocuted him with a car battery. He breathed his last after telling his mom who had done it.

There are many ways in which autism raises the risk of death. Please, please may we never be the cause or trigger. Not if it’s within our power to keep them alive.

PS Please correct me if i used neurodivergent in the wrong content!

Phonics

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You know when little ones are learning letters of the alphabet and they repeat things like “‘Dee’ is for dog. D..d..d?” while sounding out the sound for each letter?

So, my girl drags me to the fridge today so I can get her a second ice lolly. I ask her with a moan, “Oh, R…Another one? Why???”

She looks at me kneeling in front of her, touches me and says, “Why…?

Y, y, y.”

It cracked us up! We really thought she was copying me while knowing what I meant. It took me back to my boy and how he too would say what we said, but it turned out what he was saying wasn’t ACTUALLY what we were saying, but an association he’d formed with something that sounded the same, or was similar.

It always added some humour to the situation. I look forward to more. I welcome it. I embrace it. Echolalia is a privilege. Misunderstandings included.🙂

That was WEIRD!

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A few weeks ago, I had terrible digestive issues. So bad I almost took myself to the hospital. I did the next best thing and called a gastroenterologist. Now, the one I had seen in 2021 has left for greener pastures, so I went to a new one..or so I thought.

Let’s go back. In 2000, I started having abdominal problems. Pain, headaches, insomnia, constipation… I saw a GP who sent me to a surgeon. The exploratory surgery didn’t find anything specific to the pain but the surgeon said my colon was full of stool. And they took my appendix out because it looked wrong, and it turned out it had TB. So it was actually a good call.

But no diagnosis.

We moved to Britain and I cycled in and out of hospital emergency units, trying to figure it out. It was debilitating. And I was frustrated. They kept sending me to the Gynae department, where they kept testing me for STD and being surprised that I had none. I wonder if they do that for all females presenting with abdominal pain.

That got me nowhere. And so the next few years I kept trying to find an answer. Eventually, I was told I had IBS -irritable bowel syndrome. But the treatments were not working. They told me to increase all veggies and eat more wheat. BAD, BAD advice! Most of us are gluten intolerant! But I knew no better back then.

One gastroenterologist I saw did a colonoscopy and found three ulcers. My parents say I had one when I was 7 years old and they were told I had Crohn’s disease. I’m not sure about that. How come I’ve never had a flare up ever? What if he saw gastritis inflammation and thought it was Crohn’s? Can children have gastritis?

Fast forward to this appointment I had for yesterday. Our medical aid plan is not very patient friendly. We did briefly move to the more expensive one (Readers of my other blog will recall me lamenting the lack of choices for doctors with the older plan we had and how I was looking forward to this year and freedom to choose any doctor) but it was too expensive.

My city is huge. But I only have a choice of five gastroenterologists on this med aid plan I’m on. Also, after a clash I had with a surgeon, after which one of my non-Black friends insisted he was racist, I am very wary of Afrikaans doctors. I once saw an ortho who barely wanted to examine me so that didn’t help. It was like touching me would give him Ebola virus. (My country is so sadly complicated!)

So, I chose an English doctor. Turned out I’d seen him in 2011! His face was vaguely familiar but I don’t even recall why I went! According to him, I was trying to fix my IBS and also the tests he took showed high inflammation and low iron. (I’ve had iron deficiency anemia since I was a little child.)

He told me that chronic gastritis does not exist! I almost got off my chair but he’d already made me wait 56 minutes and I’d driven for too long. To have to wait and try find a safe specialist again… I couldn’t. So yes, he told me that chronic gastritis is a made up term by doctors who want to mollify a patient who insists there’s something wrong with them when there isn’t.

This, I couldn’t understand. It’s like saying appendicitis or measles don’t exist. He dismissed all those fears, including how NSAID would be bad for me.

But also told me that the meds I’m on for AS are generally useless to his other patients that have AS. So he confirmed THAT! He also told me to find rheumatologists who are conducting trials as then the medication would be very affordable. Sadly, they don’t announce that they are conducting trials! And the one set that do say it on their website have had mixed reviews.

The appointment was weird. I went there worried about gastritis and reflux and left with a lab form to have my iron and ferritin and inflammation levels tested. As well as a script for the reflux I mentioned, and NSAIDS! not sure why HE is giving NSAID for my AS when he knows I’m seeing a rheumy next week. Why work on reducing a pain I’m not there for that you’re not even dealing with?

I feel like an abused partner. One minute hurt, the other, confronted by a smile. I don’t want to go back. But sulfasalazine is known to cause anemia and given I’m already surviving on iron infusions, it would be remiss of me not to check that my levels are still adequate, so I had my blood tested this morning.

But I wish I’d gone elsewhere. I wish I’d had the option to.

Oh well! At least I was able to see SOMEONE. It could have been worse.

Perspective

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Not that I speak in respect of want: for I have learned, in whatsoever state I am, therewith to be content. Phil 4:11

Glass half full? Glass half empty? No glass at all? Or grateful that I do have a glass? When I think of the holocaust and how some concentration camps didn’t have cutlery and crockery so you had to find your own in which to put your once a day ‘water soup’ that glass becomes extremely precious. It keeps me alive long enough to hope for freedom.

Winter is here. And with it, even more pain. Washing my hair is painful in any weather, but winter means even light exercise is excruciating. Last week I couldn’t even do ten minutes of it. My knee and heel pain were too much for me to bear. Each step was torture. So I stopped, knowing that maybe another day would bring a bit more blood pumping through my veins.

Then my girl got sick. Or rather, she had yet a third skin infection. The word skin makes it seem trivial. But it was again as if she had been bitten by something and then the bite got infected. First, the red patch. Then the swelling and skin hardening. Then the pain. And the oozing abscess.

This time, the paediatrician also got the memo. Three times in less than a year just ain’t right. But what that means for us is that we all have to be treated. He thinks it’s staphylococcus that keeps affecting her. For those who don’t know, it colonises in the nose and skin. So on top of her bathing in hospital grade antiseptic and having oral antibiotics, we all have to have nasal antibiotics twice a day. All of us. If we had a domestic worker (aka maid) she too would have to do it.

This is where the glass question comes in today. I have to ensure that everything that comes into contact with her is washed daily. She can’t wear anything again. Not slippers, pyjamas, clothes, bedding, face cloth, towel. It’s winter! We live by the ocean! Everything is damp. Eve my salt shaker is wet! Things I washed on Saturday night are still very damp today, Sunday. Things I washed on Sunday are still wet. The drier we have is very slow and if you’re drying, you can’t wash as it’s a combined machine. I’m washing today’s bedding and yesterday’s towels, clothes etc.

My glass is half full. I have a washing machine. Our first few years married were torture. Washing things by hand when your fingers are stiff and painful is tortuous. Bending over a bath tub when you have arthritis, is horrible. I have a machine. I’m thankful. (But we’re running out of warm things for my girl. That’s the half aspect full aspect. I would definitely not complain if my glass was full.)

I am glad. Usually, my back would have been too sore for anything by 8am. On the treatment I’m on, it only gives up at around 11am. Only then do I want to cry from the pain. It could be worse! Today I haven’t felt like crying from the pain yet. And it’s 11:57am now as I edit. That’s good!

I have a glass that I’m thankful for. I was ironing Friday’s laundry. My shoulder hurts as I move the iron. My fingers don’t want to work well. My knees hurt. But, I was ironing in peace. And so we come to my other glass blessing. My girl is challenging. I won’t go into it all again, but ironing is not fun, usually. She tries to touch the hot part, she trips on the cord and j hurt my back even more trying to stop her from falling as she trips and the iron starts falling too, or she pulls me away wanting me to get her something to eat. But today, she played somewhere else. She left me in peace for the few minutes I could stand. She even left me in peace when I went to go boil water to make their oats. Usually, she’d be right there, crying, wanting to eat everything right NOW! But I mixed it up, poured in the honey and it’s cooling. And she doesn’t even know.

She was happy without me. She was happy in a totally different space than the one I was in. Bliss! For both of us!❤️

My other angel? The other twin? She too was happy without me. She has been extremely vocal about wanting mommy to do everything. She wants me to read to her, wants only me to feed her, wants to sit on my lap as I feed her, refuses to feed herself.. Wants me to put her to sleep, to put her in her room and change her for nap time. As she tells her teen sister when she wants to get her ready to bath, “No! Just mommy! Ella, just MOMMY! Bye bye!” But while I ironed and her sister finished off a past English exam paper, she took a clipboard and started drawing. Content. Content sitting next to her sister.

I am in pain. But I am in pain alone. I have space right now to go lie down on my bed for a few minutes while the children play contentedly without me.

As soon as I finish this, I’ll get up again and brave the pain. I do wish I had a domestic worker. But, I could not only not have one, but not have food either. I could be relying on others to supply that want. Given the ones I love most are also struggling, that would be awful. I know what it’s like to not have enough to give to someone who has even less. I would not want to be the one in need while they feel helpless and guilty.

My glass is full. I do wish I could afford to put my special angels in a special school like all the professionals who see them say. But look at the 17 year old overseas. The one who like my challenging girl, is autistic and non-speaking. They carved a swastika into the body of that poor Jewish boy while he was at school and nobody knows who did it. The suffering he went through is unimaginable. And he can never tell his parents who did it.

That could be my daughter. Suffering at school. Tormented. I’d gladly take all the challenges I face while caring for her and the rest and the house, than for her to be abused at school. So…I continue.

Thankful to have a glass. Thankful that there is something for me to drink.

I Can Say With Confidence

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I wanted to become a midwife. I wanted to deliver babies and comfort grieving moms. But she told me that nursing was “low class.” I then said that I wanted to become a social worker. I wanted to help foster children. Again, she said no. She told me any idiot could become a social worker, like nursing, it didn’t require intelligence, and I was “better than that.”

She was my mother.

She was the one who had money.

I had no choice.

I still wish I could have followed either of those dreams. When I started flunking one of my subjects in university, my friend and I snuck to the local maternity hospital to ask the nurses where I could study. But I couldn’t do it on my own. I was a minor and I needed her.

My daughter wants to become a midwife. My sixteen year old has her heart set on it. This week as she accompanied me and my little girl to the hospital where the pediatrician is based, she commented as we left, “I’m so sure I want to be a nurse. I’m so comfortable here in this hospital setting. I might not even stick to being a midwife specifically, but I want to be a nurse.”

I can say with full confidence that this is where I know I’m better than my mother will ever be. I don’t know if my girl’s Physics marks will allow her to apply. But as God is my witness, I will never stop her not my son from doing any thing that is harmless. I am better because I will support her dream and do support it. Let poverty and suffering come (All the nurses we’ve met hate it because of the extremely low pay, awful hours and abuse from doctors and patients). I will support her. I support her so much that I’ve made sure that my cousin in law will help her should she go to Britain to work.

I am loving. I am a cheerleader. I am not filled with stupid pride. I am kind. I am not my mother.

Thank you God. I hope and pray I will be like You. Just. Uncompromising and loving.