Author: Grace by any other name

God-lover

It’s Like Before the Mammogram

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I googled ‘uterine cancer’ (which is what the biopsies next Friday the 26th will be looking for) which took me to endometrial cancer and I have two symptoms. The inexplicable and STILL continuing main symptom despite the days of the tablets the doctor gave me to stop the flow, and the urinary symptom.

It’s like before the mammogram where there really WAS something. But like it, I am hoping it’s again, NOT cancer. I admit that for the first time, I’m really in a hurry to do the surgery. If it wasn’t for needing to be off Enbrel for two weeks, I’d have done it this week. I’m really anxious. My heart has been working harder for a while now according to my Apple watch. I also have wonky blood test results taken during my hospital trip on March 1…I want to get past this hospitalization so we can continue fighting my normal enemies. And find out if this Saturday’s blood tests -taken for today’s rheumatologist visit-show improvement. My March results were WORSE than ever! And I’d been on my Enbrel fully since January 25. So it was disheartening. My friend and I really hope it was just a blip and all is improved again. To have abnormal numbers that had been fine before, and numbers that have gone way worse than the bad they’d been…)

I was really touched by the sensitivity shown by a friend whose baby died in 2016. It was how he stated that he can’t get over the grief but his wife was “hit harder (obviously.)” It’s that understanding that I love. He gets it but is real about his own grief. His sensitivity is not common. I have seen some men not understanding that it does “hit” mothers of deceased children differently.

On that note. It’s also interesting how his wife is just in shock and horror over everything going on in my life. When I compare my lot with their… Her husband was our groomsman at our wedding so got lots of time to know my family and my in laws too, as one took photos on our wedding day. So I gave them a crash course in everything that has occurred in my life. Kinda. She was horrified. She-who went through the worst grief imaginable- also, like a friend of mine, feels like all of this is too much. The lack of support from family, the challenging family life here at home, the lack of help when our dear helper isn’t here, the unkind acts committed despite how kind an selfless I try to be, my declining health..and she doesn’t know about my upcoming surgery… She said it was as if the devil is trying to just get me down so he’s throwing every single thing he can at me and it’s too much, she wants to pray for things to ease up on me despite how I seem to be accepting of the crosses I bear.🥹

Speaking of crosses. I was wondering if our creator of this magnificent art installation😉will ever be potty trained or if she will remain in diapers forever.

Her dad then told me about a colleague who has a friend with a 16 year old autistic son. He is also non-speaking, not potty trained and cannot walk. Or does not walk. The positive is that he CAN manage school, so his mom gets a bit of a mental break, but sadly, school has brought no gains whatsoever for him. For my husband, it would be worse if our angel was in a wheelchair. I guess so. But I wouldn’t mind if she could find a school TOO! 😉 And I’m mean all of the little four, not just her.😅

She does repeat things she’s heard on video. And randomly shouts out animal names. Or names the foods she wants. And after prayer time on Friday, she suddenly said, “Wow… It’s time to pray.”🤣🤣🤣 I’m telling you, she’s trying to construct her own sentences that she’s not heard before! Good first start!

This girl who was nervous and scared of people… We have cleaning help three days a week. And yesterday was her day to come in. While I was sorting laundry, she told me that she’s found our girl not eating so she offered to feed her. Our girl took one mouthful and decided that was enough… But she did tell aunty, “Good job!”😂😂😂😂❤️❤️

We celebrate every word. It’s hard won. And still not consistent. It’s not like the list of words we hear is growing each day. What she said yesterday will still not be heard again for months if ever-unless it’s a request for food.

This video made me smile. Just seeing the hug and the held hand…It calmed my fears. The day I go for a consultation -at a not very close by hospital- to discuss my elbow surgery is the day both teens will be writing a Business exam. (I feel I’m ready to go write their Business paper myself because they’re both doing it so I’m marking double the number of Computer Science and Biology papers!! So! much! marking! My SI joints do NOT approve of the strain we are putting on them with our school work! I need a huge raise!) My husband will try work from home as he will be in the country that day, but these four need mega watching cos they scatter all over the place and they don’t have a sense of danger, so now that we know our angel is ok with her, I know she won’t cry and run away when it’s diaper change time.

And that..is a relief.

She got into the floor and lay on her tummy…She usually does that when shows or socks are different to her norm and she thinks it’s cool.

I love the energy and activity. So yes, no school for me, no hearing her say, “Mommy” but also, thankful for the ability to move. I don’t know if the young autistic teen is frustrated that he can’t walk, but I think as a mom, I’d be sadder on his behalf. And it must make toileting and bathing more difficult.😔With my bad bones, it would be torture. I can’t even change her diaper without worsening my pain. So yes, I’m thankful for her walking and running and spinning.

HELL and THANKFUL

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I’m in hell. AS pain getting worse each day. I quit using my pillow earlier this week as my neck pain with it- as flat as it is- was too much. It was then that I bitterly remembered how the rheumatology was surprised that I “still” can move my neck. The bone scan did show arthritis there and in other areas as mentioned, but I had managed to forget it except for when I’m washing my hair.

But this week…Maybe it’s also the cold weather hitting us. I’m limping. My SI joints are aching deep inside. I could go on and on. Let’s just say I woke up with so much shoulder pain that I don’t know now if I should try the pillow again to reduce pressure on the shoulder. But given my hands and knee were also swollen and screaming… It’s not the lack of pillow. My injections under CT guidance will be next Friday. See my rheumy on Tuesday where I will tell her that we are not making any progress with the fight.

Blood tests done tomorrow that she will need. Ahh, the costs!

But…As bad as this morning has been, waking up in the worst pain ever and with my right side swollen and stiff and more painful than the left, with yesterday having included my begging the children to, “please let me rest for a while!!”when they came looking for me, my forcing myself to cook and do laundry when really I felt like my body was in revolt and I needed to lie down, I will mention some positives.

The friend who totally understood the ramifications of the next operation. Who hates the constant pain I’m in and was teary not only about that, but my one autistic child’s academic struggles. I am grateful that someone can sit in the reality. To think, “Hang on, surgery again!??? And the procedure sounds…” and “What about the teens’ exams, when do they write in relation to the date of the op?”

It is not nice, having surgery after surgery and to have that also felt by others was refreshing and appreciated. Especially when it means I can’t fight the stupid AS given I have to take a month’s break due to surgery and there’s still elbow surgery after this.🥹(I want to schedule it after my teens have finished exams because I won’t be able to care for the younger children with one hand only and a broken body to boot.)

I am thankful for Sunday National Benchmark Tests. I mentioned to three people how my son said they are all written on Saturdays (for University of Cape Town application purposes.) But one sent me a list of Sunday dates from last year and I knew we’d be ok. I googled and indeed, there are Sunday dates. When my daughter then went onto the laptop to apply, she very easily saw the options and chose a Sunday date for the tests. And then my son did too. July 7, 7:30am.

I’m thankful that though we can’t fully enter my angel’s mind and she can’t tell us what’s in it, there are moments of connection. Where she pulls me to whatever creation she has been working on and wants me to sit and watch her as she keeps working on it. It’s hard, balancing everyone’s needs- educational and emotional while trying to be good to myself. I would love a full time nanny and a cleaner as the doctor said this week. But for now, I’ll be thankful for moments of connection. And it also makes me even more thankful for the ability to communicate that I had taken for granted with my other children.

These things I’m thankful for today are all ‘minor’ in the great scheme of life. But the major things like health- are under attack. So I will be thankful even for the small things. I know life isn’t a chess game where God moves things around for our benefit so it wwwns trite to thank Him specifically for tests that happen on Sundays as if He orchestrated it. But I am thankful that things worked out.

Also, the faster you put the needle through your skin and into your body, the less pain you feel. I felt NONE this week and I injected super fast. We won’t mention the actual medicine when it enters.

Radiothermal What?

Grace by any other name3 Comments

WARNING- FEMALE ISSUES AHEAD

Gynae stuff.

Read at your own peril

Hint- The woman in the Bible who touched the hem of Christ‘s garment.

Since my uterus misbehaved and got itself into early menopause, I’ve not been able to control uterine bleeding. I go on the Pill but it’s dangerous to do for long and as soon as I go onto the placebo, the long bleed starts. I try stay on the hormonal pills and skip the placebo- pharmacy won’t let me. “It’s too early… Yes, I know the doctor doesn’t want you to take the placebo pills but the system won’t allow us to override the timing.”

Try Mirena implant in my uterus. Bleeding continued on and off for four months anyway. After month five, I made an appointment and got rid of it.

Tried Activelle- an HRT- worked okish but ..bleeding continued for four months. See the theme? My hot flushes were disappearing though.

Oh. Did I mention the side effects? I think I did do so in another post, but let me repeat them for this post. No libido whatsoever, discomfort during the acts, terrible hit flushes- “Mommy, why are you sweating so much?” And waking in a cold, wet bed that my sweat soaked.

Then tried a different birth control pill. Thrush. Ugh. Off I went. Tried a different HRT. It was ok for the first four months! Only four days of bleeding. And then suddenly, 23 days ago- it began and has not stopped. Longest bleed since this all began.

Next step? Medication to sort it out. And surgery. Radiothermal ablation (burn the uterine lining to cause scarring which will hopefully stop the bleeding) but first a hysteroscopy (camera to see what’s going on inside) and biopsies of different areas of my uterus for testing-ovarian and uterine cancer come with bleeding in menopausal women… And then the actual ablation and then another scope to make sure nothing has gone wrong (like burning a hole through my uterine wall) and then we wait and see.

Day before my 21st wedding anniversary. Not that my husband will be here till the evening of the anniversary anyway. Traveling overseas for work…

How do I feel?

Scared.

The thought of them burning a hole into me isn’t exactly a comforting thought. But it is one of the risks.

The thought of ‘BURNING’ me is not a comforting thought!

Having to go off Enbrel AGAIN is not a comforting thought! I did my last injection for the next four weeks today.

Of course, it COULD be cancer. But I’m pretty confident that like so my other biopsies and tests, this will prove to NOT be uterine or endometrial cancer.

And if the ablation doesn’t work to stop the flow- total hysterectomy.

That’s also not a comforting thought. Have you seen the hectic obesity and heart disease death stats after hysterectomy?

Not comforting at all.

I would really love a break from this life and body. Just a few months in a healthy body…If wishes were horses..

Instead, I have to ask my pulmonologist to give the anesthetist my lung function report. Talk about complicated body!

I’m thankful for a sisterhood that understands and cares. I’m nervous but hey, I haven’t died yet so I probably won’t.😉

Yes, that’s one of the risks.

Send Your Adoptees Back

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First, it was my mother telling me to send my son back to social workers so we could get a “normal” child. He’s not an appliance, he’s our baby! But it could have given me a glimpse of her thinking. If she could think a child is easily discardable just because they have special needs, no wonder I was termed a “waste” because I homeschool my children. I too was worthless because I wasn’t contributing financially. Just like my son never will.

This weekend, someone asked if my health issues that keep getting worse aren’t being exacerbated or triggered by my emotions that are under strain due to the heavy load I’m bearing- caring for all the children who have hectic needs and draw from me from wells running on empty.

My first thought was, “Seriously!?? Do you know how many of us spondees, Ankylosing patients, have other health problems? Many of us have gut issues, increasing pain, and I’ve seen recent posts where lungs are also dying like mine are. And these people don’t even have six TYPICAL children, let alone my angels with all their complexities!”

I’ve seen 37 year old mom of only one child already bent over. And she didn’t have any other health problem except that. Except AS. I’m 43 and still upright and able to move my neck. It could be worse!

My second thought was, “If for some weird reason, my children were the cause of my health issues, what would she propose?” It’s not like she’s close by and offering to babysit. She’s in a whole other country. So what then? Would she suggest- like an ex friend of mine- that I give some children away?

Yes, I had a young person suggest I give my adoptees away as my husband wasn’t really being a hands on dad like her husband is. She thought he might be hating being an adoptive dad.

Believe me, I’d get back from church and he’d nap and I’d be the one hands on even with our first biological children. My toddler son would smash his dad on the head with a plastic cube- noisy and rattling, and dad would remain fast asleep. Not all dads have received the “Give your poor wife a break on weekends and Mondays and after work!” memo like her husband has. And it’s not just dads of adopted children.

So I will be clear. I am sick because the devil has brought suffering to this world. Yes, I’d love to rest more. But my lack of rest is not what has caused scarring in my lungs.

My children are here to stay. The only thing I do agree with is that I’m not able to rest much. But none of my angels are causing my body to disintegrate.😅And I’d love it if those suggestions stopped. They reveal a lot about people’s hearts. And I spend a lot of time lamenting our church’s fallen state as it is! I don’t need more evidence of cold hearts.

The Arm

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Trauma doctor said broken arm and bleeding (internally)

It’s been tough. Extreme pain. She fell off the trampoline. Where was I? Calming down her twin sister having a meltdown. I really felt upset with God that day. So much had gone wrong. I couldn’t walk up a very small hill without losing air. My SI joint pain was extreme. But I tried to stay ‘thankful.’

Then my daughter had a meltdown. Dad and oldest sister not here. I wanted to cry. I truly needed to be resting- not going out to strain my back with heavy children. But even then, I thanked God. I was so relieved that my offering her a swing in the sensory swing had calmed her down. Yes, I was hurting my back, pushing her in it. Yes, it was hard, getting her in it. But it was extremely rewarding to finally see her smiling. And to even hear her laughing! I felt so thankful and grateful and privileged…

Then I heard a scream and loud cries. The one who was meant to be watching the younger children had just left them. In an unsafe position. And my angel broke her arm. The one who was meant to watch them had not disappeared on any necessary business. And I have drummed into them that my middle two have no foresight etc, THEY need to watch each twin that I’m not watching.

But instead, they left the children in a vulnerable position. And my child jumped closer and closer to the edge- her eight year old brother not seeing the danger. And she jumped off the trampoline (not on purpose) and rolled onto her arm on the ground.

I couldn’t believe it. Why??? Have we not gone through enough? My cough isn’t even gone!! My lungs haven’t improved! My heart rate is above normal and has been for five weeks now! My elbow needs surgery! My children are not ok. And now this. My poor angel would suffer for who knows how many weeks- uncomfortable in a cast.

I wanted to sit down and cry. But I had to pick her up and carry her to the car. And carry her around the hospital. And watch her in agony. And hold her arm down in different positions as she cried from the pain.

I lost hope.

I don’t have the money to hire a second mother. I don’t have the space to put a second mother. But my children need one.

I feel sad and hopeless.

I don’t feel thankful, I feel and am over burdened. I am in need of help, not platitudes. I don’t need Bible verses, I need help. And I don’t know how to get it.

It’s been a sad week. But I will be thankful that I’m still alive. My poor child has been in pain and wanting mommy all the time. One afternoon meal time, my children were shocked that I had her. She was soft and I was far away in a different room. But I still heard her, “I want mommy.”

And I rushed to her, shocking my teens who had thought her voice had not carried to me.

She needs mommy.

I’m thankful I’m still alive to be mommy.

Just Balloons

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The word “No” is very valuable. Children must never learn that they can have everything they want. She has already taken her nine year old sister’s doll that I gave her for her birthday – necessitating my buying a new one. And my angel 9 year old hadn’t even complained about it.

No.

You cannot have everything you want. Things belong to other people and they are for them, not for you,

A lesson her father tried to teach her today when she wanted congratulatory balloons he received yesterday when it was finally announced at his workplace that he had gained a new role. I say finally because we knew and were waiting for the official announcement so when someone at his office sent me the announcement, it wasn’t news to me but she thought it was- telling me to spoil him. I had already said my words of affirmation when he told me that the Board has decided what they had decided.

“No” has given me 50 minutes of screaming. She has thrown things around. Tried to break her cracker into multiple pieces. Has pushed me. Has tried to bang her head on the wall. Picked up the landline and threw it down. Has tried to bite her sister – the nine year old…

Oh my word. What a morning when my pain tablets haven’t taken and I just want to cry ANYWAY.

The positive is that the Endodontist was just as angry as I was at the dentist who refused to fix their non permanent crown. Its is the first time someone in the medical field got angry at someone else. And that made me feel better. Pity that appointment wasn’t today.🫣

PS. Peace has reigned. She’s doing her usual happy shouting. I wish my heart could recover as quickly. I wish all the physical stuff didn’t make me worry about the future… Next time, the phone might break. Next time, she WOULD bite her sister. Next time, she might push me over. Next time, she MIGHT fracture her skull. But for now…I focus on the now. Time for me to phone the hospital radiology department and book the bilateral SI joint CT guided injections. Ouch.

I Have a Glass

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Is it half full, half empty, overflowing?

Life has give me lemons. And I am on the autoimmune protocol so can’t add any sugar to turn it into lemonade. So I’ll just have lemon water instead.

The chest has finally started behaving, so I cancelled the GP appointment. I had been complaining for a while to my husband, telling him my elbow was feeling wrong. The one that had the nerve release but not the complete procedure I’d booked for- the transposition part. Basically with cubital tunnel syndrome, you’re meant to move the nerve from where it’s stuck in the elbow, and move it elsewhere where it won’t get stuck. To a different place on the elbow- which my surgeon claimed he wanted to but I have no fat so the nerve would have a very thin layer over it, causing me a lot of pain forever. Or, as google and other surgeons say, you can move the nerve to lie on the muscle. He didn’t. He just released it from where it’s stuck..and put it right back.

And yes, even my hand surgeon was displeased.

And now I’m the one paying the price either for the surgeon’s laziness or for his lack of experience. My arm has never healed. I have numb areas, I have areas that feel pain. But now, the nerve has become trapped too. I had been complaining that it felt like it, I have started dropping things- which means my grip is getting weaker, and yesterday confirmed it.

I picked up my dumbbells, hoping to restart my AS exercises. I’d felt too sick to do most. But when I did a bicep curl, BOOM, SHRIEK, my nerve screamed. I tried lighter weights. Same thing. Bending my arm causes pain that I now cannot ignore. And the elbow pain has now begun waking me at night.

I’ve ordered a brace to wear at night. The conservative approach is to stop the movement causing the pain, wear a brace to keep my arm straight at night, take anti inflammatories (which I am on already for the AS) and wait and see a while. But every bit of lost movement cannot be regained. This is a condition that can cause paralysis of the hand.

And so, I wait. And tremble. Recovering from that surgery was BAD, and that was without the nerve fully being moved. I assume the next surgeon I find will do the full procedure. I couldn’t sleep for weeks! My nerve was in so much pain that even a sheet on it with my pyjama sleeve covering my arm, was excruciating. I looked for a doughnut to put my arm on so my elbow would rest on air. Talk about difficulty sleeping, but the thing I got was too hard. I’ll buy a breastfeeding circle pillow as soon as I know I will need the surgery.

So, the glass has water for this thirsty soul. My chest is getting better. But it also has so much lemon juice lemons that it grates my teeth- my nerve is in trouble and I hated the long recovery period. I’m scared of it… And I hated not being able to use my arm. And I don’t know where to find a GOOD surgeon.

And also, I’m going back to the Endodontist today. I had a crown done by a dentist. A bad dentist who didn’t believe me when I said the temporary crown was way too high. I went to a different dentist that evening because I was now experiencing jaw pain from not being able to bring my teeth together and he was in shock. I didn’t even have to bite on the paper thing they use to check your bite- my upper and lower teeth were clearly not close to each other.

Long story short, that crown fell off. Then part of my tooth broke. When I saw the Endodontist she said that if she had put it in, give it was less than a year since it was installed, she would have charged me nothing to replace her poor workmanship. Alas, the dentist not only charged me for the consultation to LOOK and see, but then told me they wouldn’t be able to replace the crown and I really would be fine without it 😏. And now, a further part of my tooth broke off and I’m going to the Endodontist to find out if there is anything she can do to save the rest of it. And get a quote for how much that will cost me. A crown costs a whole R6400… Gulp.

My glass has lemons. I will have to be off Enbrel for two weeks pre surgery and two weeks post surgery. I only restarted yesterday.

I read memoirs of holocaust survivors. Death camps and concentration camps where you had to find your own cup or bowl for the disgusting ‘water soup’ they received. A glass was a luxury they would tie to themselves so no other desperate prisoner would steal. Theirs was usually made of metal, a metal cup. It was the only way they could eat enough to keep their bones loving. And that was a minority. Many died even though they passed a cup.

I have a glass. It is not really half full in my estimation, but things could be worse. I could have no glass at all. So I’ll accept the AS lemons and daily struggles of life. I’ll go and hope my tooth can be fixed. And I will be grateful for a glass. At least I can drink my sour lemon water. It will keep my bones moving.

Oops

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This morning I was very excited. I thought I’d found a nebuliser medication that had sorted out my lungs at least overnight. I had had no wheezing or crackling till I woke. I hoped my sinuses would follow suit. I felt positive they would. And so when I woke up at 4am, I was excited to finally be well enough and awake enough to pray. After all, since two Mondays ago, I hadn’t slept because of my throat and then my lungs. I wasn’t well enough to do a proper formal, good morning prayer.

I started talking to God, “Morning God! I’m so happy to have some proper long moments of quiet with you! It’s been a while! All I have done is breathe a few prayers asking for Azola to get a job, for wisdom when she speaks on the radio.. For *Joshlin to be going… Thank you so much for being with me. For giving me life despite it not being exactly the greatest. Today…”

I then fell asleep!

So much for being awake and excited!! I fell asleep! And after having been excited about my natural nebuliser meds, it turns out I was probably just too tired to hear my chest, for my husband was woken by my rattling lungs! He thought someone was scratching at our walls and he was convinced he needed to go stop the burglar. Till he realised it was me. My lungs.😅

I am a tin man again. Which is another way for me to know Enbrel had begun working. I hadn’t been this stiff in weeks. It was as if as I walked, bone was running on bone and I was having to pull my legs up off the floor. The pain in my bones has increased from only being in my SI joints to the other areas of arthritis in my neck and spine. And my elbow with it’s not fully fixed nerve from an unfinished surgery has been screaming too.

My husband who distrusts doctors and hates medication has been insisting that I go back to the GP today. That’s how bad things are.

But hey, at least I got to have time to semi pray! It’s better than nothing, right?

*Joshlin is a six year old who went missing but unlike other stories, was fishy from the beginning. Whenever I see a missing child poster, I share it for the parents’ sake- so they know there are people who care about what they are going through. But her story was already dodgy. The little girl allegedly went missing while in the care of the mother’s boyfriend. She was home with him instead of at school as she had been feeling sick.

No offense, but “mother’s boyfriend” was already a red flag. And how did the boyfriend leave a sick child on her own, giving a kidnapper the opportunity to steal the child??

Needless to say, I was not surprised when mom, boyfriend, friend and someone else were charged with her kidnapping and human trafficking.

I just want to know what happened to the baby. Is she dead? Where is her body? If she’s alive, why has she not been returned? Has she left the country?? The little girl’s community made a big fuss when she went missing. (Well done to them!!)And the mother then called off searches maybe two days later. Talk about another red flag!

So like the people of Saldanha, I too feel like she is my child. We are owed an explanation.

Where is Joshlin?

Thankful-in EVERY situation?

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You know, the Bible in 1 Thess 5, tells us to be thankful in every situation. In my head, I twisted it to mean ‘be thankful for the situation’ itself. But no! Not necessarily! I can be thankful that – if I’m truly surrendered to God- the situation is working out some mysterious plan that will yet be unveiled to me, but I can definitely find other things to be thankful for, even if it’s not the actual situation itself.

Take Ankylosing Spondylitis. I will never be thankful for it. Nobody ‘needs’ it in particular, in order to become a better person. I certainly didn’t need it. I know others have said that it has helped them care more. But I always cared. But I can be thankful for the care providers available – if they’re any good. I can be thankful that I’m not relying on strangers to pay for treatment. I can pay, even if that means losing out on holidays away, fewer books for me to read etc.

I will never be thankful for the past 11 nights of no sleep. Firstly thanks to my cooking, gasping, wheezing lungs, and now also because of AS that was just waiting too come at me full force. But I can be thankful for the people who ask, “Ok…Your meds are finished but you’re not better. What next?” I’m thankful for the concern and care. For a burden borne before I even share it.

I am not thankful for the situation that gave rise to yesterday’s post. But I’m thankful for the gracious friend I sent it to who totally understood. And I’m grateful for the friend who fully understood the audacity when someone else tried to insert themselves in my situation and said they “know” what I’m going through when they cannot ever know, given they only have a third of the number of children I have, none have the intellectual and behavioural problems mine have, are all double digit age, and she has none of the realities I mentioned in the post. And definitely had never felt what I shared in the very final closing sentence. I can be grateful for shared facepalming.😁😁I almost felt like I had written in Greek, that that would be a response to the entirety of my post. I’m thankful for the confirmation that I’m not crazy.

I am hopeful that my lungs will not stay like this. I need sleep. I need to breathe. I need silence. I need not to stumble out of bed to hide in the bathroom hoping my coughing won’t wake the entire house.

I can be thankful that I turn heads.

After all, I walked past a nail salon place and my cough was so stunning that everybody inside there looked at me. I felt like I had the plague!

We all like to stop traffic, don’t we?😉

Yesterday was a public holiday here. Husband went to buy fruit for us so I don’t scare people. I can be thankful for that too. Fruit.

In every situation, I hope I’ll manage to find something to be thankful for.

My Daughter Hurt Me

Grace by any other name4 Comments

I’m going to send this link to my people. It’s something that bugged me years ago just out of principle-and continues even worse today. I might have even blogged about it before, I don’t know.

When I ask “How are the boys?” I truly am asking how your sons are. How their health is. How they are feeling that day. Mental health included. An answer like, “Tim isn’t great. His friends are mocking him because we can’t afford expensive brand cricket bats for him. He was complaining about the teasing , feeling bad that he’s already different from the others because we are a different race to him, and now he is less than, in his eyes,” is an answer. I now know he’s struggling. Adoption when you’re Black and your parents are White is hard. Having it constantly brought up, having other differences brought up, hurts when you’re just a little boy wanting to fit in.

That is an answer. So is my other friend’s answer when I ask how her children are, “Oh, the boy has been coughing again. The girl’s tummy hasn’t bothered her much lately.” That is-for me-a proper response to the question, “How are the children?”

But even years ago, telling me a milestone wasn’t an answer, I hadn’t asked, after all. I don’t ask, “So, what can your baby do now?” I know I blogged about the church mom who one day said, “*Pamela showed us last week that her baby can walk now. And look, my son has started…Walk, baby boy. And what about Bukhosi? Let’s teach Bukhosi how to walk.”

I told her, “He’s been walking confidently for two months already. But this is Sabbath school class time and so I never knew I needed to make an announcement!”🙄

Milestones are lovely-for the parents. But they aren’t what I personally use when connecting with others. I was super excited when my son started walking at eight months old but so what? It wasn’t some major announcement to anyone but his aunt who wanted to know how he was progressing. A church friend boasted about how she was a very early walker. But she’s not a very nice person. I’d rather she was that than an early walker.🤷🏽‍♀️

It’s even worse now. It started stinging when I’d take my now eight year old for assessments. We’d be sitting in the waiting room and another mom would be all friendly and conversational. She’d ask how old he was and then confidently state, “Poor you! He must be crawling all over the place and opening cupboards! Must be so hard to keep up with him, hey?” She meant well. But I was there because he couldn’t sit without support. Crawling was months away. She meant well. But it stung because it was a reminder that all was not well. It was the very ‘why’ for my presence there. To find out ‘why’ my son was not reaching milestones. Why he was so wobbly. Why things were bad.

Today, it’s even worse, being reminded of what is possible for MOST and the norm for most others. I have a nine year old who took her little sisters’ tongs to her bedroom and just snapped them. Broke them. I don’t know why. I find books in her room, pages torn out. I don’t know why. She laughs a manic laugh on purpose that sets my teeth on edge. Very loud and exaggerated. And I wonder, “Is this fetal alcohol syndrome showing its ugly head? I did ask her birth mom if she drank while pregnant on top of everything else she subjected my daughter to in the womb- the multiple abortion attempts that must have impacted her- and her response was, ‘Sis, I lived as if I wasn’t pregnant.’” It’s a concern. We see the psychiatrist on the 18th next month. This is money we don’t have much of, going down the drain. It’s things my children play with, being taken from them. And when I ask why she did it, why she damaged things, I get an almost irritated, “I don’t know!”

My very talkative twin has started smearing her stool everywhere. She has been potty trained. But this week, she’s gone off the rails for some reason and isn’t going to the loo. Clean ups are backbreaking and tiring.

I could go on and on. My eight year son makes no sense sometimes when he talks but expects an answer because in his head, he is making total sense. “But why shouldn’t I eat the muffin?” Yet there is no muffin and I certainly never said he couldn’t eat it (nor any other thing.) And he laughs when I ask what he is trying to say or ask about.

Yesterday, my not very talkative daughter hurt me. She was extremely upset but couldn’t say why. Even the words she was trying to say weren’t real words. It’s bad enough when she says ‘grapes’ then gets upset when I pull the grapes out because she actually meant to say ‘bread.’ But when it’s gibberish… “Pezel’ she will say. And she doesn’t mean pretzel. And there’s nothing specific she usually refers to with that name. So I’ll be lost. I’ll try a few of the therapeutic calming things we should try and they will fail. She will be angry. And things deteriorate. Yesterday, she threw a hard sippy cup with juice in it and it hit me. Hit my mouth. I told her, “No!” She then threw the other one, then her sister’s toothbrush then…And then herself. So I had to bend down to catch her before she cracked her head on the tiles. And my BACK!!

See, that’s the problem. I’m dealing with all this while not even well. I am living with many incurable conditions (even IBS isn’t something mild. I just don’t mention it because at least it won’t leave me disabled or dead like AS and my lungs.) It really is constant mental strain. Every moment my mind is either trying to solve a problem, wondering how to hide something, or causing me extra physical pain.

When I ask people how their children are. I mean it. I’m not asking, “What are your children about to do?” I’m not asking, “Where are you going this weekend?” I know the answers would only reinforce how I am alone (amongst my circle of friends) in my battles. But when I ask, people think that I want to know their movements, plans, activities.

I don’t. I really am truly concerned about the health. Mental and physical.

I’m the wrong person for the other stuff. I get reminded of what’s missing with every response that says, “I’m planning Tim’s birthday party. Sarah’s was last month..” Good for you. Your children can handle people, can make friends. Mine can’t. People cause them stress. Thanks for the unintentional reminder that our lives are very different, yours and mine.

Or telling me, “They’re fine. We’re off to ballet soon.”

Good for you. Your child has coordination and the ability to follow instructions. I’m breaking my back doing exercises to help my eight year old balance. Both he and his sister were asking me why they struggle to walk on a balance beam, why they keep falling off a straight line. But hey, nice for you that yours can dance.

I know they don’t mean to rub it in. But they do. They rub in every dream I had for my children that is an impossibility. Normality is not our reality . They remind me of every struggle I have and every freedom they with their typical children have. It hurt when my daughter asked why they can’t walk on a straight line. Seriously?? Even therapeutic activities remind them how ‘not ok’ they are. And that hurts my mommy heart.

And so, I will share this post. I know you mean well. But I’m the wrong person to share those activities or plans with when I’m not expecting it. It’s like telling me you’re going on holiday when I can’t even get my precious child to go to the shop. Nor could we ever afford a holiday nor feel rested with their challenges. If I was unemployed, starving, and didn’t even have food every day, would you tell me about the expensive cake you ordered for your husband’s birthday when cake is something I’ve not afforded in years? But if I ask you your plans for his birthday, then that shows I am ready to know that you’re eating while I’m not. And will celebrate with you in spirit.

That’s how it is when you tell me the oh so normal things your children get to do when I haven’t asked. Some days I am strong enough to bear the reminder that my life is full of disability while yours isn’t. Those days, when I’m strong enough to bear the reminder, I ask what your weekend plans are.

But on the days when I’m reminded of how limited Africa is for our special needs children, on the days I’m aware that I am only homeschooling special needs because I have no other CHOICE, it’s been taken from me, I can’t find a SMALL (less chance of her bringing viruses home) place for a non potty trained almost five year old, I can’t find a special needs school for my son that isn’t noisy, and all the strain results in more struggle for this dying body…Please don’t remind me of what I’m missing. I know your children go to school. My goodness, do you know how blessed you are that your children can COMMUNICATE? Please don’t tell me, “They’re fine. They’re going to school just now,” when I ask how they are. You have no idea what might have just happened, or is happening in that moment in my soul.

Maybe my child just hurt me and reminded me how desperately I need help and a break. I can’t take disability leave like other AS patients end up doing. I couldn’t even do bed rest right now with this chest infection because they are all home and with hectic needs. I can’t even send them for a walk because my littlest angel refuses to go anywhere. So much for the doctor who yelled at me for not resting.

Please just answer the question I ask. More than anything, I want your children to be healthy and that’s why I ask how they are, not what they are about to do or going to do. The activities? Those are extras and bonuses. And most days, I don’t need a reminder of that when I’m gasping just for air, wishing for their neurodevelopmental health.

Most days, I need a hug. My body is failing. It’s really frightening to be told by a specialist, “Well, there’s nothing more we can do to treat the lungs because it’s AS causing the decrease in function…Any virus or infection is a matter of life or death….Please purchase N95 masks. Ask the pharmacists for that kind of mask to wear in enclosed places.” It’s like a small death sentence- always living in fear. Worse now when I’m not even able to try slow the AS down because I’m sick. (No injections till my chest has recovered.)

But…My children are getting older and stronger and WORSE. I need a hug. Not a reminder that your lives are so unlike mine. I want to relate to you as a mom. Without the reminders that unlike you, I’m a special needs mom and you’re not.

I love you. And I do ask about activities when I’m able to bear it. Everything in your life matters. And so I ask for that one small mercy and thoughtfulness. That you answer only the question I ask, and tell friends like you, friends in your shoes, about the things mothers in your shoes get to do. Things I see slipping further and further away while moms like me do therapy and screaming and meltdowns and pain, wondering what will happen when the four year old child who hurt me is bigger, older, stronger than me.