Christ saw Nathanael before He saw Him. Christ knew Nathanael and knew his heart. More importantly, what He knew, was perfection. A committed Jew who had no guilt. No artifice, no hypocrisy. A true and good man.
I want to be known by Christ for being good. I hope He is looking at the angels and telling them I’m a good and noble Christian woman.
I hope I am. And I hope I remain one till the day I die. I hope He sees my passion for Him. I hope He knows how deeply I love Him and how I wish others did too. I hope He marks how, like Job, I’ve not sinned despite the awful life I have. I keep mentioning the rheumatologist upon hearing of the challenges my children have and knowing I’m their only teacher, knowing how bad I am, asking, “Why did God do this to you?”
And my reply, “I guess..why not? It’s just how life goes.”
I hope He tells the angels, “In all this, Thandi sinned not.”
If one ever doubted my girl had ADHD and autism, they’d be proven wrong. She has so much energy, can’t focus on even short bursts of the very “school” SHE demands, and becomes extremely hyper fixated… Along with wanting things a certain way and no other way!
Tonight, her twin did her usual “Meh, who cares about sleep?” thing. But this time, as has happened a few times, she joined in too! I heard happy sounds and went into her room where she was sitting up and having the time of her life. I asked why she’s awake at 2am. “I’m playing around.. singing..” Indeed! Who DOESN’T sing and play by 2 am??
She cracked me up when after I prayed, she added, “Dear Jesus, thank you for Mommy, she’s so glad and happy. Help her back to not be sore and she mustn’t steal from anyone!” Not sure about that last part!🤣
I’m glad and happy she only felt glad and happy vibes from me! That’s all I want. For my children to never feel like burdens even on my hardest days when – like now- I’ve had minimal pain and alone time and maximum suffering.
Jesus said to take up our cross and follow Him. Simon of Cyrene helped carry it, but only Jesus could hang on it. And so, I’m thankful for those who carry my cross when it becomes too heavy. I hope God finishes my crucifixion soon though.
Today, my second Cosentyx injection is meant to arrive. Let’s hope it does because I’m meant to inject today. I can say that after one dose, I’m still deteriorating. Let’s see how the next months go! With a bit more sleep please! Though to be fair, I was already awake with bone pain in my shoulder, knee and lower back anyway.
I pray my girl’s happy go lucky nature never ends. She is so bubbly-at times!
I wanted to show that somehow, no matter what life throws at us with little to no earthly support, no human hugs, God can see us through without ever losing our character. Without ever using pain as an excuse for lashing out at people.
I wanted to warn others. Back pain that lasts long? If your orthopedic surgeons are like mine and my radiologists and see nothing, try the eyes of a rheumatologist.
I wanted to show mothers of hectic autistics that they aren’t alone. I’m here with you. I’ve now had three days of screaming hell. As I showered earlier this morning, I braced myself for the war that I feared would erupt. I told myself I was being pessimistic. “Today is a new day!”
Well, new day, same old prolonged screaming. Same old body pain and fatigue. Same old… I was right. I thought of a research article others had quoted that said that mothers of autistic children (I’m pretty sure they mean those with high needs) have same levels of stress as those of soldiers who have gone to war. As I fearfully looked at the hours that loomed ahead of me, I believed it was possible.
Unceasing. Relentless. No break. No escape. Adrenaline.
And like soldiers who mock people who whine, I find myself with not enough sympathy. Especially not for those who can read an entire post about many topics, and come back and make it about themselves as if we live the same war.
We don’t.
And so, I considered shutting this blog down yesterday. I want to know I am helping. I don’t want my own words to be used by someone to show me how little they understand of my life because they’re so busy inserting themselves in it.
And no, it’s not you, Flydah.
I post on instagram about a lovely doctor who ordered a hospital bed for me to help with my body pain, and this HEALTHY woman talks about how she spent so many years in a hospital with her one child. She has no clue the trauma I’ve gone through with other children. She forgets I have MANY children with significant challenges. She forgets I’m living in constant pain and have many children at home who need me while I’m in hospital with one.
So no, her PAST life in the paeds ward has absolutely NOTHING to do with the wonderful doctor I was praising.
The post here on my continued decline, the handicapped disc and the child who pulled my hair so hard it hurt? Her response is to tell me to be like her and get a handicapped disc from wherever (Don’t know what she’s referring to and) I already HAVE a disc!! Is that all she could get from such a long post? An opportunity to insert herself and not hearing me?
That’s all she sees. My words, my story…She sees her own inflated ego and I’m not in the mood. I can’t take narcissists. I have too many in my own family to deal with some stranger imposing themselves. She can go start her own blog where she can talk about herself.
I used to hate silence. Readers who stalk. Readers who read but never whisper a word. But they are much better than self-absorbed commenters who make you question why you bother sharing your story if all it does is make others compete to tell you THEIRS. Especially when it is so clear that they didn’t hear you at all.
But, I’m not shutting the blog down. There will come a time when a weary and sick mom needs to hear the voice of another sick and weary mom. There will come a time when a Christian will wonder if they are wrong in asking God to let them rest. They’ll wonder if they are weak.
You’re not.
We’re in good company if even Elijah wanted to die! How much more those of us whose nights are broken by pain and challenging children and whose days are filled with the very same thing?
But I have taken steps to protect myself. Yes, I did tell her that it seemed every time I shared elsewhere about myself, it invariably goes back to HER.
She missed it. Totally missed the point.
I’m in a season of lamenting. I have absolutely no friend in my shoes. She definitely isn’t in my shoes though she tries to kick me out of them so she can insert herself in them and erase my experiences. This is my space to be me. To cry out what my smiles hide. To scream out what my hugs to my children and patience towards them can’t release.
I will not allow someone to hijack my space.
So, thank you again Flydah for being the opposite. For showing me you hear and ever praying for the situation, for the point of that particular day’s post. Thank you for hearing me.
For if I am not worth hearing, then why should I even exist? God created us for community. Not competition, community. I don’t have that except via social media. If that disappeared, I’d disappear too.
Your comments hold me up. You are God’s hands.
I saw an article debunking the PTSD moms with children like mine endure, saying it’s a lie that it’s similar to that of solders coming from war.
I don’t know. All I know is my experience. And my experiences is hard and endless and has absolutely no solution. I feel sorry for broken soldiers.
I feel sorry for all of us. It’s no competition. If I’m not going through what soldiers go through, it’s no big loss losing that comparison. I know I’m going through my own hell. And thanks to loving comments, I know I’m going through it with God and His child.
Thank you for making my online diary a place where I find solace and an outlet for pain.
My handicapped disc application process was a nightmare. A mini nightmare, but still one! Like another lady who came after me in the queue, I’d gone to the wrong office first. One three suburbs away. So I limped back to the car and drove (hurts) to the correct department.
Milnerton Traffic Department.
The queue was not for the faint-hearted. I wanted to leave after standing there for so long that it was causing more pain. But what if next time it was longer? I’ve seen it longer and waited in much longer ones. So I waited.
Finally got in, was sent to “Enquiries” by the guard, only for the lady there to tell me the ONE lady who processes applications wasn’t there! I could “wait 10, 20 minutes or leave and come back later.” Just one trip home would take that long! And I’d be hurting myself even more and wasting fuel. So I opted to wait.
I went and told a lady who’d come maybe five people after me. I’d overheard her asking the guard the same question I’d asked, and telling people on the phone that she was there waiting to apply for her dad’s disc. I told her I was suspicious. 10, 20 minutes is one thing, why also the option to leave? Was it really going to only be 10, 20 minutes? She went to the back to ask what in the world they meant, making us wait so long? She came back and told me she was leaving and returning later and I could too, as the ONE lady who does our applications was on lunch break.
I decided to go sit in the car instead of waiting there in that very busy department unable to be comfortable in my N95 face mask.
Waited around 30 minutes and went back in and the ONE lady was called by the “Enquiries” lady. Two ID photos, R100 in cash (No card payments) and a form later, I had my disc. While waiting, I realised that if they granted me the disc, I’d have another reason to be grateful.
It really made life easier when a hospital guard at the gate told me I could park in the “Moms and tots” parking bay recently. I don’t view her and her twin as babies so never had before. But with her weight, with getting her out and into the car seat, with trying to convince her to walk in, it’s better the shorter the distance we have to try convince her not to run away.
So, I got it. My application was convincing. (I fill in a section, send it to my doctor to fill in the rest. Receive it and take it in.) Bittersweet-for those not subscribed to my YouTube channel so won’t see the video I posted. Bittersweet. I don’t know if my hips will ever be free moving ever again. The disease itself only progresses-gets worse. Treatment-when the correct one is found-slows it. So yes, though it was hard reading the form where my rheumatologist had written that “Ankylosing spondylitis is a degenerative disease. No recovery,” it was harder holding the disc in my hand. I applied because I need it. The pain, stiffness, limping caused just by walking from the car into the pharmacy is something you can’t ignore. Add waiting and you’re in trouble.
Also, my lungs… Just carrying two packs of diapers up the stairs at Bayside Mall and to the car makes me short of breath. Same with carting just one bag of groceries to the car at Table View Shopping Centre. It’s as if I was doing a slow run by the time I get to the car.
But, that wasn’t my plan. My plan was to be a healthy mother who can take all her children who need therapy, to therapy and do their home exercises! I was to be able to teach painlessly, instead of wishing I wasn’t teaching at all, instead of being happy when our very short (ADHD) class time ends.
The behavioural optometrist emailed to ask how we’ve been. She misses the children. She means it. She always said they brightened her day. The last time I’d gotten in touch was when Amarissa had knee surgery so couldn’t return to therapy yet. (Visual perception disorders are about the entire brain. So there’s lots of stuff you’d also be doing in OT. Movement, crawling nag, bear walking…) I explained to her that I’m much worse than I was the last time I’d taken my middle two to therapy, and already back then, I would get home and be in extreme pain. Now, things are much worse.
She’s based in Durbanville. There are no behavioural optometrists in our area. My oldest daughter’s Biology practical exams were in Durbanville in May. By then, driving home even after just an hour’s wait- I was in so much pain, grunting in agony, that Eliora would tell me, “Don’t worry, mom…Almost there. We’re almost home.”
Slowly, thankfully slowly, struggling more with breathing only at age 44!? Disabling pain, decreasing mobility, worsening limping so early?
Heavier challenges at home, bigger struggles as a mother?
I need the disc. But it means facing the reality of no cure and for now, not even a treatment that helps relieve me of the enthesitis and bone pain. Every limp is shooting pain in my SI joint. Stiffness in my hip. (Is it fusing? Why are my AS exercises becoming more impossible for the right hip on top of the decreasing spine mobility?)
Worse. Harder. Sadder.
No wonder it was bittersweet, holding that disc in my hand.
She’s just performed a Lazarus on her older siblings.
So, I’d noticed and smiled when every time I take a walk with the little ones-not very common or daily because of pain and fatigue-my Nālo always mentions God. We walk past a church with a cross on it, she will exclaim, “Jesus died on the cross for us! He loves us!” We walk on grass, walk past flowers and trees, “God created these!” She will yell. Always talks enthusiastically about God, always. I thought it was cute.
Two days ago, my nine year old, Amarissa, heard her and commented, “I wonder why when you walk with us, she always talks about God and Jesus! Only when YOU come!”
Then I thought it was cute and funny!
Call me The God Mother. That’s Who she thinks about when she thinks of me!
And that is also, “perfectly ok!”🥰😃
I also loved this. My girl is so full of contradictions. The other day during a rough episode, she pulled my hair so hard that I felt some pulling out my scalp.
But she also is so calm when she’s calm. She came and decided to get her babies and toys and comforter to lie down on the sofa. Randomly! When I got home from my parking disc errand, I found her there. I got close to say hello and she ever so gently took my hand and pushed me away.
At least ONE of us is able to say, “Give me space!” Mom guilt doesn’t allow me when I want it!
Last night, I was alone with the twins while the teens went to look for gas for our stove and heaters as all our spare gas canisters are empty. None to be found in our area. The twins both sleep in diapers (one is always in a diaper) and a sleep sack, so I got the fright of my life when I heard sudden loud clicking and then flushing. Our little Pharaoh had unzipped herself, and used the loo and out her diaper on perfectly! While I was checking and confirming, her dad phoned so I asked if she wanted to talk to him. (Yes, I’m more ‘single’ mom than ‘married and husband home every evening’ mom than I thought I’d be.)
She smiled so big and said, “How are you..? I’m so happy! I love you! I love you SOOOOO much! And..I like the bread mommy just gave me and..and.I like my Pharaoh hat!” She finished quickly and with many giggles 🤣🥰 Motherhood has sweet, funny little moments.
(Been up since 1am. It’s 3:48am. Might as well blog while hoping the pain tablets start working. As I said in a video I’m yet to post, while I share the sweet mommy moments, AS undergirds every single moment of my stupid life. And so…I got my handicapped/disabled parking disc yesterday. I talk about my feelings and those of my friend who commanded me 😉 not to mention her on YouTube, in the video so I won’t share it here. Suffice to say, I’d prefer many more of the moments above and fewer AS intrusions. I’ve paid for my next injection which I’m due to take on the 6th, waiting to hear how I’ll receive it because with AICF funding it, they have an account with the Biologics Department of Dis Chem (my pharmacy). They’re separate to my normal walk-in pharmacy.
Last month, I paid the R5400 I must pay for this biologic each month, before finding out three days later, that AICF had agreed to fund R1800 of the R5400, so they sent the amount to the local pharmacy I’d ordered my first injection from and I had to go collect the refund then to organise the next injections, email the Biologics people directly from now till October when Discovery stops partially funding the other part of the total monthly R8128.49 cost of the injection. AICF only pays their amount for the duration your medical aid has agreed to fund for. Not sure why, given when they stop funding we’ll have a terrible cost. Bye, bye house fund! Goodbye special needs school fees.
Also not sure how the injection will get to me. Direct delivery? Or sent to my local pharmacy? I asked when I sent in the email to place my order, but was only told to pay then they’d send it.. somewhere. I hate it when people don’t respond to a direct question. This IS my life. My money. My health so surely I deserve the courtesy of knowing how this works?
Oh well!
I can now park closer to store entrances, closer to my pharmacy entrance, hospital -very useful with my not very controllable, and very heavy non-talker, and closer to any other place that has disabled parking. Less painful limping to endure. Less breathlessness as I carry even just two packs of diapers from the store to the car. Better.
And so, the God Mother will leave this there. Sweet moments and mystery biologic delivery, and the positive side of the parking disc.
Good morning and signing off! Yesterday I slept from 5am to 6am after waking at 1:20am but I’d ended up taking a sleeping tablet at 4am. I guess I’ll have to try that. Cos the pain is just not going.)
Thankful for the happy moments that give me brief breaks from feeling. The giggles really help in that moment.
So, a while ago, after my dad died, my girl asked me if he had really come into the house and carved stuff into our bathroom wall. “When I died, Oreneile and Oreratile were four years old. Amarissa was nine years old” and on and on. Given she had claimed to have heard a woman’s voice, something we didn’t have the heart to punish as a lie because sadly, these things really DO happen, I thought we should check everything out.
And she started giving us a lot. At about the same time we started a new supplement. The headaches she claimed to have, maybe they were caused by the l-theanine. But not the hallucinations. Nobody has complained of those. Or maybe she was also faking the pain just like she made up the devil who was out to get her. But I couldn’t tell. And she was slurring her words and unable to think properly when doing puzzles so we couldn’t ignore it, could we?
I asked a paediatrician to examine her then we could figure out if we’d do any brain imaging, get a psychiatrist to see her…One told me to wait five days. But my girl kept escalating and saying she was scared. And she kept insisting her head was thudding and being squeezed.
I asked my oldest son if perhaps she had not watched something that had a patient with her symptoms, he said no. And that was that. After all, everything I download, every educational or real story I download for them, they watch together.
I then started to believe her after he said no. The second paediatrician I contacted said she should immediately be hospitalised and then have brain EEG, MRI under sedation. We went from zero to HOSPITAL! She hadn’t even seen us and examined her so we could see if she really was sick.
Got to the hospital and I kid you not, headaches all gone, no more visions of Satan, she even was able to track my finger which she’d been unable to. I wanted to leave when I saw that. I knew she had us fooled. But, we were committed. We all knew she didn’t have anything scary in her body, but all feared that doubt would lead us to not test her thoroughly. We spent three day in hospital doing the tests I mentioned above, and blood tests and lumbar puncture.
All fine.
Just like she was in hospital. Extremely happy now that we were in hospital, giving her the attention she craved.
Long story short, after countless painful days in hospital – painful for me sitting for hours- we left under the care of a psychiatrist indeed.
On Friday, I’d slept at home while my husband did the next night duty. As I got ready to go back to hospital, my teen daughter says, “I hope she’s not copying the hospital show of the nine year old who had encephalitis.”
NOW you tell me? The week before, she’d gashed her knee open purposely to go see the doctor because I was going to take her eight year old brother in. If I’d known that she had watched something similar, I’d have not believed her. I would have known! What a waste of resources! Lots of extra pain from sitting in hospital, lying on an uncomfortable hospital bed, sitting and waiting for MRI and for her to wake up…Lots of pain.
The only positive was in the post before this. The suggestion made by the psychiatrist that we ask our paed to put our non-talking girl on Strattera. Everything else was a colossal waste of time. Psychiatrist assumed we hadn’t done an educational psych assessment. We have. Twice. We are doing all we can.
Theme came up that perhaps I’m doing something wrong with the curriculum or I changed something that became traumatic for her… Nope, she wanted the doctor. We’ve changed school curriculum many times over the years, trying to find something suitable for her learning disorders and easier for her to handle. Something she will want to do instead of constantly complaining that she hates to learn. And she doesn’t even have to write much anymore, she types and types well. She is doing well with her school so there is certainly no trauma there. It’s a dyslexia friendly curriculum and I do some of the reading for her so she doesn’t get tired and unable to process well because of decoding the actual letters and what they mean and trying to make sense of the whole line or paragraph. I praise her and even much later remind her how well she did that day and how she is progressing.
I break the lessons down, mix book and technology and brain breaks. I do it all. I definitely do more than a typical school would. And so for my attention seeking child to start having people interrogating me thanks to her lies, is awful. A betrayal. She herself told the psychiatrist that she was disappointed she wasn’t at the other hospital where her leg op had been. And that she prefers the paed there.
Something I do know because she’s extremely obsessed with him that it’s unhealthy. Oh, I can believe that part. She makes paper planes and names them after him. She once got online and found his website and sent an inquiry perfectly spelled out, “Can you please help my sick baby. I love her. So mortifying! She’d gotten into my profile so they contacted me to ask if they could help me!
It be your own people.
I’m depleted of strength and defeated.
My husband threw me under the bus too. Ammy said to the psychiatrist that she and Mickey don’t get sweets but the twins do. I said nope, not true! Husband said, “But what about the days when they buy their treats earlier than treat day and so don’t have their treat on the proper treat day? What if you are making them feel like that?”
Me..not the children who ask to eat their treats earlier than the twins. He has no clue what I’m doing with the children. He’s not here! And even when he’s hear he doesn’t hand out any treats or teach them or tell them Bible stories, it’s all me. So he has no reason to try show from what he thinks is happening in his absence.
And the psychiatrist was clear. Ammy specifically said sweets. I give them sugar-free sweets on Fridays and Saturdays. ALL of them. I asked my eight year old if he knew his sister had said I only give the twins sweets. “But you don’t! You give us all! What??? Why did she say that?”
Why indeed.
And of course, the psychiatrist then asked Ammy if it feels like it’s bio kids vs adopted! What?? How dare she put that in her head when it had not come up in her own narrations to the psychiatrist? And thankfully there, my girl was honest. We don’t treat our children differently based on where they came from.
That part made birth mom extremely angry. “Sis, you love them all so much! I know you do! How can she say that about you?? Why? How can she hurt you?”
That’s a good question. Lying about me is one of those sins I hate. And we know how these people are brainwashed into believing the child over the parents.
Maybe my current AS flare up has been triggered by the emotions roaring and rolling around my belly.
I always feared trying to educate small ones of differing grades. That was before I knew the extra educational needs and learning disabilities that would befall us.
What is perfect in the day of a sick mother of disabled children?
Whatever it is, it is impossible to attain. So, I will live with “perfectly ok.” Today, was perfectly ok. I limped to go collect our hope in two bottles and went to the bank and then wanted to crawl home and stay in bed.
But it was perfectly ok that I couldn’t. It’s perfectly ok that I feel tired. It’s not only the AS fatigue, it’s also the good kind of tired from USING my body, not only from constant pain and fighting inflammation. I like that kind of tired, even as it contends with my body’s innate fatigue that I wake up with and fight against daily.
It was good be busy. I love being busy. I love doing. And so, when I finally lay down so I could plan the next Bible story segment and learn the memory verse so I could make up a song for the children, it was perfectly ok that that didn’t happen.
Instead, just as I dragged my laptop across the bed and put my feet on my hot water bottle, my littles came in, my four year old leading them. “Can we come lie down in bed with you?”
Well, there went the silence and rest I’d been hoping for! Instead, I got some cuddle time, some Bible video time in bed and random conversation with my littles. It’s a fair trade, right? After all, the most important thing is to help them develop holistically, and that definitely includes emotionally, doesn’t it.
I didn’t do ANY of the school work I’d planned. I’d planned it before I knew I’d need an hour and a half to go collect my daughter’s new med, the Strattera. My hope in a bottle. Last week, during our crazy hospital stay, I told the psychiatrist how my non very talkative angel can’t focus. I try show her pictures, she isn’t interested. We tried sign, she didn’t look long enough to learn the correct sign for the word meant. We speak, she doesn’t copy. We try the iPad, she only wants one specific app- Starfall- and only one specific session. AND she is all over the place anyway, bouncy and busy. Never sitting still.
The psychiatrist asked if we’d tried any ADHD meds. I told her that (based on the extremely judgmental pharmacist who castigated me once when collecting my son’s Ritalin) I’d thought I have to wait till she is six years old for an ADHD assessment, and even with age six, the pharmacist was angry at me and all the professionals who agreed that my boy who was six years old at the time (and our other girl) has ADHD. I wish he could live my life. I wish he could try learn with multiple thoughts buzzing in his head. I wish he could try memorise simple things with other things intruding and stopping him. Seriously, I asked my nine year old what one plus one is and she said two. I congratulated her and she said she’d been guessing.
After all these years, not much stays in the memory despite different learning methods and just rote learning, even with medication. Imagine without!
So, psychiatrist said Strattera should take 6-8 weeks to start working – if it does. It’s generally also sued for ADHD but nobody has ever suggested it to us. The psychiatrist hopes that then her head will be calmer and able to take in more, to learn. My nine year old asked if it would make her talk.
That requires prayer and at this point, a miracle. I told her that what I want is for our girl to learn to communicate, whichever format that may be in. We will learn with her. We just want her to be able to learn.
And so, we have two (out of three- the pharmacy only had two and our usual one close by had zero) bottles of hope. Our hope in a bottle. We need a huge dose for all of us! Today, it’s about my non l-talking angel who moved our hands to get what she wants except for the words, “Cereal, juice, peanuts and raisins, ice lolly..” She certainly has her priorities sorted.😉
If we look at our problems individually, we will faint. Sleepless nights of pain, my right hip seems to be fusing. It’s not behaving at all and it’s scaring me. My limping has increased even according to my trusty Apple Watch. To know I have such precious and so young (intellectually forever young and struggling) is daunting. I can’t do it NOW, how in the world will I do it next year?
And so, today I focus on our hope in a bottle. And I focus- for this blog post because sadly, life isn’t like that, I can’t compartmentalism all the things and problems – on the times she is happy. My daughter’s anesthetist asked why I was limping. I explained that I have AS. His response, “Please tell me Amarissa also doesn’t have it.” Then he did an impromptu check that I still have neck mobility after telling me that AS is an anesthetist’s nightmare. Yeah, I can’t forget the people who can no longer have surgery under general anesthesia because they can’t ve ventilated due to the curve they are stuck with. I also can’t forget the man who thought he was fine and when they inserted the breathing tube, it turned out bone had grown INWARDS into his throat. The bone broke off and unbeknownst to the theatre staff, he choked on the bone as it occluded his airway.
AS is a beast. AS with special little ones is hectic. I changed our angel’s diaper and wanted to cry. How will I do this next year? And the year after? Will she be able to comprehend if I tell her to kneel so I can wipe from that position rather than on her back? She doesn’t comprehend much now… Or, doesn’t react as one who does. “Give to Ella” means nothing. How will this work? And the siblings who also need lots of work? How will we do this?
I don’t know how. But we will. We have no choice. Somehow, we will keep going, even when we don’t feel perfectly ok at all.
And though we didn’t do any of the book work I’d planned, we did lots of physical and occupational therapy home exercises. We were happy. We laughed, we cried. I did laundry….We did stuff. And didn’t I say I like doing? What we managed, was perfectly ok.
Also, I got validation. I researched lots and read books by qualified doctors and researchers. I buy the supplements…The psychiatrist if we’ve tried magnesium, yes. Zinc, yes. All of them, we are doing. Not only for our non speaker, but for our ADHD girl with learning disorders who landed us in hospital last week. Basically, I’m doing everything that I can. The impossible is not in my hands. I need to learn to be perfectly ok with that.
She suggested we take our girl for an educational psych assessment. We’ve done two already in her life. I sent the report and our vision therapy report. Again, validation. I just wish I could ram into my thick skull the knowledge that I am not failing my children. It’s hard to believe you’re doing perfectly ok when the majority of your six are struggling so much. But we must.
Give ourselves the grace we would extend to others. Start with yourself first.
I’m officially done. We read of Hezekiah crying and wailing, upset that God has told him to set his things in order as he’s going to die. His tears move God and the sun goes backwards.
Nope. Not for me. The pain is unbearable. I’m tired of being woken by it. I’m tired of being sad over my children’s struggles. Struggles I can’t help. I can’t anymore. My lungs seem worse, I’m more breathless with exertion But maybe all would be? Maybe I’m imagining a decline. I just know that carrying loaves of bread to the car made me breathe hard. Maybe it’s because it was raining so I walked too fast??
I revelled in the jumping happiness when my girl received her Temu Pharaoh hat. I tried to ignore how inept my almost ten year old was when we made these below for a “ladybug party” suggested in her Preschool book. It was physically and emotionally draining, dealing with three children of very different ages but all as clueless as the four year old. Nothing helped-not showing, demonstrating, slowing down… I regretted doing such a simple activity as it took a lot out of me physically and emotionally. If they can’t copy and follow along with big objects, how will they read well? Lots of adjusting to put the blueberry head where it should be, and the wings how they should be.
I suspect Cosentyx has caused abdominal problems.
I tried so hard to find positives even though the disease is progressing and making it hard to do my children’s hair and to cook- my arms this time, not only the back. AS stinks.
And then..no sleep! Both girls are awake! Both twins! Help!🤣🤣It’s 3:44am, been up since 1:47am. Bedding and pyjama changes as they weed and pooped through!
My life is crazy. My husband was telling me about a colleague whose sons have now left home and how he and his wife sometimes have no clue what to do with themselves. He said I too would be so lonely and bereft.
Not really! I always enjoyed my own company and I’d finally read books for myself, not on therapy! But, I’ll never have an empty nest. I’ll always be supervising and making sure this child doesn’t hurt that child and finding things for them to fill each day. 😩
I have seen some adult day cares for people like my children. Maybe in my 70’s I’ll get a chance to breathe during the day on week days. It’s my only hope for a break from the relentless supervision, breaking up arguments and keeping the other safe from the other and lack of mental and physical rest. We’ve looked even in other provinces for centres but they only help children with moderate special needs, not severe like my non verbal angel.
Someone sent a happy birthday message and I thanked them. Then I reminisced on how my father had great genes because many of that part of their family are just not aging. My niece still looks like she did 30 years ago! I hoped they all had a long life, “though I’m becoming crippled.“
The reply was to tell me to just be “happy and grateful “ as my birthday is a day of happiness.
Yeah, easy for others to pretend I’m not suffering. Especially when they’ve never actually tried to understand what active Ankylosing spondylitis does. I am still in touch with the Cosentyx nurse, I have some side effects that I’m not sure the cause of- yesterday I had debilitating diarrhea. Is it the sulphasalzine or is it the Cosentyx? Both cause tummy issues and I had gone back onto the sulphasalzine/Salazopyrin because of how relentless the suffering is- but not back at full dose- only half- because that vertigo really frightened me.
This is a card made by my nine year old. She was up at 2am which incidentally, was when her noisy younger twin sister was also up. I am too scared to hurt her by asking what she was trying to write, but I do see the part about my being sick.
My girl looking at me… I tried to tighten her locs yesterday. I was seated. But just moving my arm hurt. It was like my shoulder and back were burning. I’ve never had that struggle before, reader! Ever! I ended up not doing even ten!
And speaking of locs, her twin sister went through a time when she pulled her hair when angry and some are extremely loose (my girl’s hair is very thick but very soft. It’s almost like older baby hair texture, it has never become kinky like ours. And so it gets out of the locs very easily even though she has had locs for long enough for the hair to have fully loc’d. So now she has bits flying around, she herself plays with her hair and breaks some locs
And in my mind, is aggression and violence. Her little sister still gets angry and violent. And my other non talking twin is the same. If you dare say the word “sorry” to someone, not even to her, she lashes out. She did so yesterday while I was doing my girl’s hair. I told her I couldn’t do much because of pain. She said, “Sorry, mommy” and whack, suddenly the other twin smacked her or tried to scratch her face, it was so fast I couldn’t tell. But the victim was calm. “What happened? Why did she do that?” I told her she’d said sorry.
This should not be my life. I should not be falling asleep on my feet. I should be able to do my children’s hair. I should not be worrying about violent children. Nor should I be worrying about my nine year old who seems to be having auditory and visual hallucinations. Voices telling her to do stuff, and seeing my deceased father doing stuff. The voice one happened while she was awake. I’m hoping she just had a lucid dream when she saw my father entering our bathroom and carving into the wall in blue that he died when this child was that age, this one this age…
I should not be in extreme pain and increasing disability..
More importantly, I should not be dealing with people who want to act as if my life is perfect. I had a typical, normal day yesterday. I can’t escape. Birthday or not, special needs are there, I have to teach, I have to mother.
And I have to accept hard things. Like how my non talking twin is not interested in learning or engaging. She has specific portions of the learning app, Starfall, that she wants to do. You are meant to count the number of items in a container and then pick the correct number of three choices given. She just wants to pick. If it’s wrong, she goes to the next choice. She isn’t interested in my counting the items first, instead, she pushes me out as is her norm- Well, yesterday she asked me for cereal before pushing me out her room.
I felt helpless and sad. She is just too busy to take much in. She repeats oft repeated phrases in educational videos but I don’t know how much she understands from it. I just know that true happiness, is impossible. For me to pretend my day is stress-free because it’s my birthday is impossible.
So, today is one of the days that was only meant to bring me two pupils in my little homeschool. But my nine year old, Ammy, called her little sister so now I had three children at three different levels doing three different lessons- all at once.
Because they can’t read, or, the reader becomes distracted and then forgets what she has read, and loses her place and then forgets what the words conveyed to her, I have to sit and discuss with each of them while the others wait. Usually, I tell the older two what to do and then I call the younger sibling so they can work while I teach her. Not today. Today it was mild chaos.😉
My nine year old’s lesson included learning the difference between is and are. So, I said to her, “Ok, look at the children here at this table. Count them… Must I say, ‘How many children is at the table? Or must I say, ‘How many children are at the table?’”
They all agreed that the correct word is “are.” And then my littlest girl added, “Three children! Ammy, Mickey,” and then pointing at herself, “and Pharaoh!”
I had to ask her again. She’s so proud of herself!
Yes, she’s only got stockings on her lower half. She was meant to be having quiet time in bed! But she and her conspirator older sister brought her out in stockings and a T-shirt.
I don’t know how many months this phase will go on for. I know my teens are embarrassed when out in public with her. I’m relaxed- as long as she isn’t hurting anybody, and doesn’t cause any problems for anybody, I’m ok with her hyper fixation. It could be worse.
They said I should write a book 