Author: Grace by any other name

God-lover

Wins

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Since Thursday, I’ve been consistently limping, walking off because of the stiffness in my pelvic bones. I was even stumbling because I struggled to always lift my feet high enough off the ground.

This video was yesterday, Saturday morning. I had never watched myself before. My husband did once complain that while he had a break on a work trip and the teens were at exams, he had a peak at our security cameras and he didn’t know where I was going, about to take a walk with the small four while clearly limping.

Since Thursday, I’ve slowed down. Pain extreme. Exhaustion bad. I didn’t even reach 9000 steps on Thursday yet my usual average is between 12000-14000. Yesterday was worse. Despite all the pain meds, I didn’t even get a minute during which I could say, “I’m pain free.” It was hell. The pain was consistently an 8 out of 10. You couldn’t ignore it.

Today, for three and a half hours, I had almost no pain. I could fully ignore it and only felt it if an inflamed area got bumped!! It was lovely! I was so scared that yesterday heralded days or weeks of no relief whatsoever.

That’s a win for me! I know the nights are bad, and the mornings too. But I’m hoping my day tomorrow will be like today, at the very least.

Second win.

I haven’t heard her calling me mommy in a year. She stopped even saying, “ Dinosaur” for her dad. But she is still saying words, naming the foods and beverages she wants! That’s so different. All other times, her words would disappear for months.

Also, if you listen carefully, she whispered, “Doll” twice! It’s not the first time she completed or added to something I’ve said. As she watched me pouring cereal into a bowl for her, I said to her, “I put it in!” And she added, “ Into the bowl!”

Other things have stayed the same but a bit better too! I noticed that a “blister” she’d had on her right hand was now looking more like an infection so I asked her dad to take her to the doctor yesterday. Honestly, even if I didn’t have AS, I wouldn’t want to take her. She experiences so much suffering! Things scare her, she wants to leave and not wait, she wants to pull me out the doctor’s rooms and doesn’t want to be examined. It’s traumatic for both of us-her being ‘tortured’ and my dealing with her very big emotions while wanting to cry along with her.

Her dad was also not feeling up to it because of her screams and cries and how helpless he feels. He said he’d take her only if or our eighteen year old son went alone.😅I chose my son, who was NOT enthralled with the idea.

She came home screaming.

But guess what, she didn’t scream going in. Didn’t scream or even want to leave while waiting to be seen, and except for when the doctor wanted to measure her height, she allowed him to do other checks!! The ONLY reason she came home screaming was because near the END of the appointment, she spotted a wooden piece of art that she wanted to take with her.

And while waiting for the appointment to start, she spotted her favourite calming object- a plant! Her dad asked, “What’s that?” And she actually answered!! “It’s a tree. It’s leaves.” And she tried to pull her brother’s hand to pick it up.😅Thankfully she didn’t complain when the answer was no.

All in all, it was the best doctor’s appointment she’s ever experienced. Her anxiety and anti psychotic meds are helping! (We still get angry cries over wanting things to happen that can’t ever happen.) I was right that she needs oral antibiotics, and her brother came back much happier than when he left. I mentioned the being right thing because I didn’t want to send my husband on a fool’s errand and have him return telling me I was being worried for nothing.

Maybe one day she will answer all questions and tell us her thoughts and not just blurt out random words like, “ Tiger!” out of the blue when she does speak. Maybe one day she will answer more questions than she can’t. Maybe one day I will know that she UNDERSTANDS me when I tell her I love her.

Maybe.❤️

PS. The doctor asked if she didn’t need Ritalin or something because of how hyper and all over she was. I am so vindicated! Not that my husband said I was wrong in thinking she probably also has ADHD, but it felt good for a professional to wonder if it would “not help calm her down.”😅 We have over a year till she’s even eligible and I don’t even know how we’d assess her for ADHD given it’s all about ability to focus on tasks and how quickly one loses focus and the weak points that show typical learning disorders found in ADHD. She does not stay still! At all! But, we will cross that bridge when we come to it!

Not Even a Minute

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Today, I have experienced not a minute, not even a single minute without extreme pain. Not enough to make me writhe in agony, but enough for me to wish I was sedated. All day. Not even a minute during which I could say, “Ahh, the pain tablets have worked.”

And this is while still using the Enbrel. Toes up to neck. Pain. Swelling. Pain. Stiffness. I could hardly walk today. It’s like my joints- hips and SI- were made of hard cement.

If I needed any further sign that Enbrel is not working for me, today is it.

I did write to Discovery yesterday, asking them their reasoning. The auto reply said it would take 30 days to get back to me.

I don’t have 30 days.

I don’t even have 3.

Everything is getting worse TODAY.

My mobility is frighteningly reduced. Where will I be next year? Or, at the end of the year?

I’m praying that this is “just” a winter flare, though they do say that every flare causes even more damage than normal AS.

Pink is me last week. I can’t get any higher. Black was in December 2023 and even then, I had been frightened because I’d become worse than I’d been in August.

I feel worse.

I am worse.

I hate AS

And though I keep thinking I’m ok psychologically, my husband says I am depressed. I guess I fit in with the description of those with AS in every aspect.

I still think though, that my depression is more because of the helplessness around getting my children the intervention they need, and thereby, getting the REST I need. It’s the combination that is so vicious. Pain, fatigue, hard work – inescapable work. No leave. No time off.

I need a miracle. Maybe more than one.

An Inconvenient Truth

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(Alluded to in a recent video, but different day, slightly different thoughts for my new readers who aren’t on YouTube.)

We are Christian homemakers and homeschool educators. This means, it’s on us. The home, the education- it’s all on us whether we like it or no, whether we think it fair or not.

I write this as a 40 plus year old mother looking back at her 20’s and 30’s. I was like the young mother who contacted me absolutely tired. Not tired as in, her body was exhausted, but tired of the fact that she is always mom. No break. No weekend. Always mom. (Refereeing children who have upset each other, making my sure they are eating, making sure clothes are clean and children bathed.)

Her husband would come home and relax. She’d still be stressing with their two little ones. It took him a long time to agree to cook once a week. But even that was a hollow victory as he took the easy way out and fried or baked burgers and (I think) chips (baked in the enablements.). She wanted him to REALLY cook. To make a well thought out, balanced meal.

But as much as I hate comparing, there are still the men who won’t cook or fry or bake ANY thing. I grew up with a dad who baked and fried and Sunday breakfast was him- either yummy fermented sorghum porridge, with toast and cocoa, or chips and amagwinya aka vetkoek. His baking was always on point so I just assumed all men helped in the home. He worked, he’d sweep, clean what he can, iron his own clothes. I took over ironing his pants when I was about out 14 years old and even then, only for a short time or when we didn’t have a helper. But there are men who won’t even fry a burger. Sad. Very sad. And not Christlike at all.

But anyway, I did rail at how unfair it was back in the easier times when I only had two children. When I wasn’t a mom and had a normal job, my time at home was relaxed. Now? Not so much. Today is a public holiday. I lay there in agony not wanting to wake Mr I’m on Holiday by opening my pain tablets. I tried not to even shuffle around to find a comfy position. No holiday from disease either, for this mom.

We did work as a team in the morning, with him washing some dishes while I made the children’s lunch, and then it was the Sunday Usual, “I’m going to nap now.”

How many mothers would love to have a nap? I saw lots of people who have Mother’s Days and general days like mine. I’ll leave it there for you to get what I mean. But suffice to say, breakfast in bed..? For us? Never. Napping? Impossible.

So, I rolled up my sleeves and got cracking.

The laundry wouldn’t sort and fold itself, would it? There’s no point in complaining, whining, getting angry. It is what it is. When you signed up to be a Christian homeschool mom, I am pretty sure your husband didn’t promise first that he would ensure you get a break on weekends and holidays. We certainly didn’t agree to it.

This is honestly where you just turn the other cheek, as unpalatable the idea is for many of those raised with feminist ideals. You just do your duty and forgive the one blind to your broken body. There’s absolutely nothing wrong with asking for more equitable treatment for all, but when it doesn’t come, it’s not the end of the world. That’s between your husband and God. And what’s between you and God, is how you will spend the time while he naps.

Will you be angry? Will you bang pots and pans around? Will you let the children run amok in protest?

I know what I will do. I will be a homeschooling mom every hour and minute that I need to be one. I will fold and sort the laundry and tidy up where I can. I will be the one who comes up with ways to keep the children active and busy in non destructive ways.

I will give my best because you see, my reaction is also between me and God. That is the inconvenient truth. GOD is Who my real boss is, not me. What will God see in me when the perceived injustice wants to overwhelm me and I also covet the rest many men get? Will He see me graciously and happily accepting the cup I chose when I chose to be a mother?

Or will he see the devil in me, angrily railing at the world and upset that what I feel I deserve has not been given me?

What did Paul do? Even though he was worthy to receive tithes and offerings, he didn’t. He cheerfully did God’s work for no pay, sacrificing time and health to toil when he did not have to. And so I too will cheerfully do my work. I am laying up my treasure in heaven. Self forgetfulness, sacrificial giving, meekness, turning the other cheek, godliness with contentment? God sees. And that’s Who I live for before I even think of living for myself.

It is tiring. It is lonely. All we can do is give GOD and our children, our best. And God will help us to do so.

I Summoned the Devil

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I summoned the devil. And I knew I was about to! But, I’m desperate. And have no clue what exactly I’m waiting for from the rheumatologist’s office . Are they going to appeal? Are they done with helping me? And the last time I asked for info a month after the original request for change in meds, I was reprimanded like I’m some irritating dummy by her nurse. So I won’t be asking.

Back to the devil. This devil is an oral tablet called Sulphasalazine or Salazopyrin. I emailed the rheumatologist asking if I can try it for my fingers and other peripheral joints. See, my first rheumy gave it to me in January and it did nothing. In May, the next rheumy said they didn’t know why I’d been put on it and it alone seeing as my worst symptoms were my spine and SI joints, which Salazopyrin apparently doesn’t work on. It works better on the peripheral joints – fingers, wrists, feet… Given how bad things are, I figured, “Ok, I’m getting worse. I have no clue if the rheumy’s office is appealing nor what the way forward is because they ignored my first email saying I’d be waiting to hear what the way forward is. So, let me try Sulphasalzine as I have some in my house and maybe it can reduce my suffering. “ I was really upset the night my HAND of all things, woke me after a terrible sleep anyway. It is just such a small part of my struggles, so it was a personal affront that it- not my back, shoulder, neck- decided to scream out that night!

This is now war!😅

I emailed the rheumy asking if I can try it, and she said yes, and sent a script. I knew what I was letting myself in for. It’s so horrible a medicine that you have to take it super slow before you get to a therapeutic dose which is four tablets a day. I suffered starting on two tablets last year- headaches and urgent diarrhea -so yesterday and today, I only took one. And even so, the side effects have begun.

I knew I was calling more suffering upon myself. And I know it takes six weeks to kick in once on full dose, so I’m giving it eight weeks before I assess if I should continue.

Send help. 😩😉

ETA: As I was sending the script, I saw that my current rheumy has very different instructions. She actually DOES want her patients to start on one tablet first. Heh heh, I’m not as clever as I thought. The first guy just wanted to overwhelm me too quickly

At Night

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A group member asked if when we dream, we have AS in our dreams with its attendant pain like she does when in pain in the night. I told her, no. What happens with me is that I have nightmares. Always have no matter what causes the pain-post op recovery or bones. I have nightmares when in pain in the night.

They’ve been getting worse. Prolonged. More personal. Usually, something bad has happened-like a dead father. Or something bad WILL happen and I have to escape. But now, it’s happening to me directly. Two nights ago, I was being viciously assaulted -r*ped. I’d try run to freedom and help, and THAT man would r*pe me where your bowel movement comes out. THAT back passage pain remained so strong throughout the multiple dreams that I was sure I’d wake up with some weird buttock (u guess my SI bones were screaming) pain. I’d wake myself up (or so I thought) but I’d wake up into a new nightmare. I ended up thinking I was in a coma and would never be able to wake up, stuck in horrendous dreams.

I did wake up.

Last night, bombers were attacking our university and chasing us individually. I ran to a shopping centre-there was a knife man. I couldn’t run away. My legs wouldn’t move.

And of course when I did wake up, heart pounding as always, I was in extreme pain. My knees are getting worse. More swollen and more sore, for longer. Same with elbows, right shoulder, fingers, neck and back. Neck today has been bad. No position was pain free at all. Nothing helped. My husband was asleep and I didn’t want to try shift too much in case I woke him. My daughter has been awake since three am and I heard every bit of her laughter till I woke him at 6am to go check her diaper.

I discovered yesterday when trying it with my husband and child, that I can no longer lie on my tummy and go up much with my hands on the floor and arms not. I’m as high up as when my elbows are bent. So that’s what I will stick with. I won’t let this stupid disease bring me down so much that I give up on my AS exercises.

And I’m not done fighting. I emailed the principal officer for the med aid and have asked what requirements they have that I haven’t met yet. I asked the pharmacy to do my last box of the Enbrel. I had canceled it when we were sure I would be approved for Cosentyx. I did my third post-op Enbrel injection on Friday. I’ve bought sanitizer for the car for after I’ve paid for fuel or been to the pharmacy, I’m wiping trolley handles down and try to remember not to bite my nails. I’ve put a mask in each bag I take with me to the store or pharmacy. I’m ordering stuff even when I can send the children as I’m scared THEY will catch a cold or something while waiting in a queue.

I’m down but not out. I couldn’t think of anything positive to say to God yesterday. The pain and fatigue were too intense. And today, the pain worse. I couldn’t post a positive status.

I’m down.

But not out.

Americans

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I genuinely felt sorry for the Americans in my groups. The ones whose health insurance tells them, “This year, we’re not paying even though you’ve done ok for 14 years on this biologic.”

I have no clue what has gone wrong. I d didn’t expect this. After all, I’d seen this.

Then yesterday, I got THIS

I have no idea what to do. I wasn’t going to rejoice, but for me, it was a given that they’d agree to partially fund the biologic. I just knew the approval was going to be the first step on a very long road. That’s the thing. But it was an obvious step. I’d even asked the nurse what the chances were of my getting declined and she said it basically never happens, we just have to follow the process.

Well, here we are. I’m stuck with a R7400 biologic and no way of accessing school fees for any of the children. And that’s the problem. I could handle being sick better if I wasn’t also homeschooling. It’s not like the Cosentyx would have helped me immediately. It’s not immediate- if at all! And it still does suppress your stupid immune system that’s on overdrive so maybe I’d have still gotten sick and needed a break. I needed four months. Four months of suffering before knowing if Cosentyx is the right med. Instead, I have THIS. No Cosentyx. No journey to trying to slow this down.

They said I don’t meet the requirements. Of course they don’t give you the contact details of the decision maker so you can ask what requirements those are! And honestly, there’s nothing extra we could say. We gave them everything the first time. And still they said no. That’s what’s hard when people I tell ask about lodging an appeal. I have no new information. It’s still the information they said “So what?” to. How would an appeal help?

I feel like I’m one step from losing it. I can’t homeschool four small and out of control special needs children. I need school. I will never be able to afford special school.

What a mess. I feel hopeless and sad. Today is a bed day but instead I’m off to meet a cardiothoracic surgeon and HOPE he has something better to say about my daughter’s rib than “Wait till you’re older then the pain will hopefully reduce in intensity.”

Things are bad.

AS Today

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Still waiting. I see some movement on my app. Things that were approved in the background and calls to medical aid from a specialized pharmacy my current rheumy uses. A pharmacy I signed consent for to distribute the Cosentyx. So I’m hoping they will email me with good news soon! Pretty please.

Today… When you think you can’t feel worse and still survive, you do. You keep breathing, despite. You move even though your bones feel like they will split. Somehow, you keep living.

I was so excited reading of other women’s struggles with showering. Fatigue overwhelms us and we do it through sheer force. Some don’t shower daily. And others go shower only when the husband tells them they’re becoming a bit stinky. I’ve never reached the “Nope, not this week” stage, but there have been days I’ve wished I could just turn the water off without putting soap on face cloth. Or mornings I am even more tired than when I got out of bed- more tired half way through my shower than before I got up. I’m so relieved to know it’s not just me.

The one person who commented that she USED to feel like this is someone who has found the right biologic for her needs. Will I ever find one?

I was also grateful to read that many of us struggle with tight clothing. Or clothing that is skin tight. Like leggings, bras, waistbands… I prefer dresses over skirts because of that. It feels like my skin is being pressed hard. Like my clothing is painfully tight. Knowing others also prefer to be naked in summer (Well, not also because I don’t ever stay naked!), are looking for comfy bras for when out in public… Winter is hard with its need for layers. Will see. Maybe look for long long hoodie tops that are as long as long dresses, and wear tracksuits under them, instead of leggings, or track pants with skirts and petticoats. Way before my diagnosis I bought one top fromTruworths which was advertised as long but it only reached my knees. I know. Boring if you’re not living this discomfort! Sorry!

But again, I’m thankful. If we can’t even shower how am I teaching and smiling and planning and printing?? How am I making things happen every single day without collapsing from the sheer mental strain of keeping my body moving when it only wants to rest?

I wish I could share my suffering with my family. They’d really appreciate every grain of rice, every veggie burger if they knew how much effort it took.😅

But, I can’t! So, if you’re friends with an AS warrior and they never seem to want to go out, this could be why. Terribly painful bones, and/or a body that wants to collapse and feels like it’s carrying the weight of the world.

Do Me a Favour if You are Unmarried

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Truly study your upbringing. Look at everything you accepted and got used to as the nor. Look at the behaviour, temperament and attitudes you were raised to expect and thought of as typical of those who loved you.

Look at your parents. Compare them to other parents. Nobody is perfect, but maybe the love your parents exhibited towards you, the love you grew up thinking was love, is flawed. Maybe it’s not love. Maybe it’s not what you deserve. Maybe it’s not what God would define as love.

Identify any negatives from your childhood and early adult years. Ask if you have healed- if you need healing. Do not marry, not even get into a relationship while wounded. If you don’t marry another one who will wound you, YOU will become the harmful one. Destroying the one who put their heart in your hands.

If your parents were constantly affirming, wanting your best and caring about your needs and taking your wants into account, if you got used to the concept of respect being a two way street on which both you and your parents met half way, you are on your way. You are closer to marital bliss.

But see, the narcissist is wily. You can come from the best family ever, where real love and respect were modeled and still fall for a narc. Maybe she seemed like she needed help, and you were taught to be a helpful guy…Then she nabbed you. Little knowing that’s all she’s able to do, take what you give her but never give you anything but harsh words, sarcasm and sorrow.

The problem is that narcissists are perfect at showing you their good side. Even if that side doesn’t actually exist. They are especially adept at taking the quality people. The kind people. The ones who are firm and unbending. They know they can use that against you because you have told yourself to be loyal and to never “speak ill” of someone else.

Perfect victim.

Silent victim.

I only know of one spouse- especially in our very silent Adventist world- who has spoken up publicly about being married to a narcissistic man and what she says is true. He was a charmer. You could NEVER imagine he would do the things he did. I met him.

That’s the problem. They aren’t the typical bad boys or manwhore girls. They are the good guy next door. The innocent girl. And so nobody would even believe you unless they are really wise or really love you.

Being married to a narcissist is a loneliness only another spouse of one would understand. Everyone assumes you are happily married only because that’s how YOU act. You never show how you feel inside because you have no choice but to keep going because frequently, there are children involved. The lady was able to speak her truth because her children were grown up (except for a teen daughter) and had seen enough to make their own pronouncement, “Our dad is whack.” But the other victims of narcissists I know don’t have that luxury yet. They can’t even split up because they worry the children will be raised by awful moms, with the victim men only having visitation rights. Or, if female, they worry that they won’t be there to be a positive influence when their toxic dad has them.

I’ve spoken to a lot of spouses. What I’ve seen is that some men are so intent on not being like a cheating, wondering dad, that they trap themselves with a girl who knows he will stay no matter what. And she becomes the “no matter what.”

Or you have the girl who grew up being told she’s nothing. The very first guy who claims to believe she’s his everything, seems to be her salvation and so she chooses him. Not knowing that soon the mask will fall off and she will come to realise she is actually nothing to him because he is so full of himself. No space in his egotistical heart for HER heart cries.

I’ve seen so much pain that I am jaded. I don’t like weddings. People all begin with hopes and dreams. They think, “ MY one is different…” But too often, their one was only different when s/he wanted to acquire them. They are merely a trophy. And one day down the line, be it a month or ten years later, the scales fall off and they realise their one didn’t want a marriage. Just a badge of respectability.

Marriage, a real marriage, is the meeting of two minds. It’s the attempt to make two hearts beat as one. It’s a process of give and take. “You want that? Ok, it won’t kill me, let’s do it!” And, “Aww, thank you so much!” Marriage, a real godly marriage, is when the enemy comes from outside and you both fight against it as one.

If you are single, I hope you remain happily single. And if you are married, I hope you have found the freedom to be yourself and to be loved for who you are and what you believe in. If not, if you are miserably married, I am so terribly sorry. I’ve seen the damage- though invisible to the outside eyes that see your ever present smile. I see it in your words, I feel it as if seared into my heart.

And if you are the toxic partner. If your husband or wife is crying hot tears and keeping a lot inside because of you and you don’t give a d—n because only your feelings matter anyway, God have mercy on your soul. Because I certainly don’t have any mercy to spare. I hate those who cause pain so casually and then want to be begged or appeased, making the innocent party beg for a crumb of love while giving themselves fully. I really despise gaslighters. I hope you ask God for a new heart. You definitely need one. In fact, you need a heart- period.

Yes. Totally different to my usual stuff. But it’s been on my heart for among time. Narcissistic people are abusive. And it’s an abuse we don’t talk about. We need to start because wounds are forming every day in the silent victims who the church has taught to be quiet. Words do harm, just as much as sticks and stones, and the scars may be invisible, but they are permanent- with only more flesh being flayed away with each passing day.

I hate all forms of abuse. I’ve seen how the church treats the abused. I’ve been vilified for helping a woman who was almost murdered, run away to stay with her very worried bosses. I was vilified by church elders. I was apparently meant to gk speak to her not to find out what he did, but to make her go back to him, despite my find out that it wasn’t even his first, second, or third time!

Thankfully, I belong to God, not to the church. The church …No comment. My heart is safe with God. He will never harm it. And so is yours.

Over 43 Years

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I spent over 43 years feeling and knowing I didn’t matter. Even by age six, I was hiding my physical pain. Till one night my parents caught me thrashing around the bed which eventually led to a colonoscopy when I was seven years old that apparently showed I had Crohn’s disease.

The high school deputy principal couldn’t know it. Couldn’t know that I and the younger Coloured girl who lay next to me on the single bed in the sick room had no ‘love’ to go home to. That we were- first time meeting though it was- the only comfort the other would find. I was feeling tiredness and pain and she was having terrible period pain.

We knew we’d have to take a long walk to the bus or taxi rank and then sit in there with a whole bunch of strangers and then go home to a quiet house because our mothers wouldn’t leave work just because we weren’t well. So we stayed in the dark, sometimes sleeping, sometimes talking about how horrible we felt till the deputy headmistress came in and scolded us, shouting as if we were committing a crime, telling us that if we weren’t going to go home, then we should go back to class.

I don’t think she ever thought that we would have wanted to go home..home had represented comfort and care.

And so, two years ago, my husband lectured my parents about how they not only didn’t love me, the only child who consistently cared for them, bought them food and electricity etc, but they had taught my younger sister to despise me too. And he had had enough of her rude demanding messages to me. And had had enough of how they didn’t care when I was sick or recovering from surgery.

Today, we took the children to Vredenheim Animal Farm. The farm part wasn’t much to write home about. Giraffe House is much better. BUT they have been saved by the big cats. All taken from places where they had been born and raised in captivity- no idea how to survive in the wild, and so kept safe there to live where they’d be fed instead of dying quickly through never having learnt how to hunt.

I’ll add way more photos and video and info about how autism also joined us, in my next ‘random’ YouTube video once I get time to do so. This is just a glimpse.

So, when someone remembers my invisible disease, it means a lot. Some days, even when my arm would be in a sling, it would be forgotten by those who were meant to love me. Today, it was our ‘regular blog commenting’ lady’s turn to remind me that she thinks of me in my entirety when she asked how in the world my back survived my daughter who insisted she was tired and needed to be carried. (Wearing a pillow case on her head as she was pretending to be Pharoah.)

I matter. My silence isn’t taken as a sign of a lack of suffering!🥹She’s so far that our cultures are very different- my dry humour doesn’t translate in her country. But her heart crosses all the borders between us.

She didn’t just see a mom carrying her daughter. She saw an AS patient straining herself even more than normal. I didn’t even tell her that the ride there was already unbearable for me. I didn’t need to. She would have guessed it had she known how far from home the place is.

Connection. It was through Facebook in 2008 I believe, that we connected. And that connection has stood the test of time. We have thanked God for giving us the forgiving, gentle hearts we have, willing to treat kindly those who have hurt us and lied to us. We have discussed our children, our husbands who are generally absent – hers working in a different country and going home once a month, and mine traveling a lot and running and resting a lot when home.

We have despaired, and we have thanked God. We have worried about mutual friends and prayed for our sisters. Maybe it’s because she too had a complex childhood with insults thrown at her. Maybe that’s why she’s a better person. I firmly believe maltreatment in your formative years either leaves you bitter and unable to be human and kind and gentle, or better. More empathetic, caring and concerned about others. She is the latter,

I’m thankful that shared suffering and lack of love has led to a love that transcends borders, time, and distance. I pray we both allow God to transform us so that we all spend time together in heaven where we won’t have any sick children to talk about, or lack of this or lack of that. Just an abundance of goodness.

And lots of love, from the One Who is love personified.

Being Seen

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I appreciate it so much!

It’s the little things that remind you how isolated you are. The assumptions. How someone can automatically assume your family outing was normal because they haven’t yet internalised (never will) that your life is anything but normal.

And so, when someone makes an effort to remind you that they always keep in mind that your life is challenging, it means a lot. We may never understand each others’ lives, never be able to know what it feels like to be the other, but to state that one is aware that there is a constant challenge on top of another, is in itself meaningful.

I have a 60 plus year old friend who is like that sometimes. Sometimes she just becomes a hug when I didn’t even realise I needed one. She has horrible fibromyalgia, joint problems and other issues nobody can figure out and Raynaud’s. I’d say she is the closest to feeling what AS feels like with its stupid swollen bone marrow. Yet she freely admits and constantly mentions that it’s easier for her because she CAN rest. She doesn’t know how I do it with six children with such different needs. Yes it’s less rest, but we all know pain and fatigue don’t really care whether you’re lying down or not. It’s more of a mental and physical ‘reduction of suffering’ that she has. But age and those operations she’s had are hectic and her body is worn! Anyway… She never tries to relate. Never tries to say she knows what I’m going through. And does a lot of “How do you manage all of them with their different needs? I struggled with only ONE!”

That is exactly it! They are all so different! And so differently challenging. And I love them all so fiercely! But oh yes, I thought my life was full when I only had two! Now it’s bursting at the seams and something is bound to break! Hey, if it happens, I’ll run away and go sleep at her place! Her daughter has run off to interesting places abroad so her room is free for me to escape to. 😅

I appreciate it. Today, my four year old who’s not pictured above, hurt her thumb in some way. I assume so anyway because she started crying and was holding it out to me. I asked her not to put it back in her mouth so I could take a look. (We can’t even get a chance to put the nail bite stop medicine on her finger because it’s wet!) But she did. The way so many parents of understandable children take the children’s communication ability for granted! I know, I was one of them!) Then she cried even more after sticking her thumb back in her mouth and picked a chair up, getting ready to throw it. It’s already chipped and cracked from another time she did that and so I quietly said, “Gently…” She became even angrier. She did put the chair down gently but then when I looked down to continue what I was doing – tightening her twin’s locs- she smashed her forehead down onto the chair. You can imagine how that impacted her. So I took her out so her noise sensitive brother wouldn’t suffer, and took her to a quiet place where none of us would talk and maybe make her feel worse.

It worked. After a while.

I am still struggling to process this. I hate this. I don’t want to become one of those autism families. The ones that scare me. The ones with the teens who make holes in walls and break doors. But I see it escalating. First it was banging the back of her head against the wall or cupboard, then it was throwing her whole body backwards onto ceramic tile floor (Try catching a heavy girl when she does that without warning and see how even your healthy back responds) and then she started picking chairs up and smashing them down. And now it’s a combination – chair and body.

I don’t like where this is headed.

And I know that when that old lady 😉 sees this post, she will send virtual hugs because even before it happened, she had been asking me how I do it.

I don’t know. It’s so lonely over here. So, so lonely. I make it seem funny and easy sometimes out there in non- blog but it’s not. I just know that sharing it with those who don’t get it makes it even more isolating because they don’t get it, ignore it, and then tell me something their children did that mine will never be able to do. Just to make sure I’m very aware of the isolation. 😝 I’m mentioning the isolation

I laughingly shared how I was teaching my middle two during the twins’ quiet time when suddenly, my four year old came bursting out her room and insisted on also doing school. It hurt. It really hurt. I now had extra work to do-bending over the table- and I wasn’t ready mentally and definitely hadn’t planned a lesson. She asked how I keep sane. And that’s without my telling her how my angel has PDA. She wants to do things HER way. Yes, she wants to do school, but she doesn’t want to be taught or instructed. She will work on the page with dots she’s meant to join, but first, she will colour in. And then when the siblings get up because they are done, she starts crying. Everything must be done her way.

It’s exhausting and isolating because nobody can imagine it. Nobody asks what bad or scary thing happened today when my day has ended, yet I would have lots to share if they did. And so, I appreciate when it’s all just acknowledged as challenging. ‘It’ takes in the head banging, the hidden used diapers one of the middle ones hides in the wardrobe, it takes in the huge costs of diapers for four children who should all be (if they were following typical milestones) all be out of them at least all by day and none at nap time and only maybe the twins at night.

It rejoices with any positives, but knows that I’m also wearied by the negatives I don’t share.

As for my next attempt at taming the AS beast? I asked the nurse where we are now in the process. Those were my words. “Where are we now that it’s been a month and I know last week Discovery said there were missing documents.”

I got what two others- above friend included- totally agreed was a patronising lecture implying I was being a pain on how I should be patient as “these things take time.” At no point did I say I’m tired of waiting. At no point did I say they are taking too long. This was my first request for information! As I said in my reply to them, I wanted to know what we are waiting for at the moment so I can gauge how much longer I might have to wait.

My goodness, every day sees me with worsening pain and stiffness. My husband was still shocked this evening at how I “couldn’t walk” this morning. Surely I deserve the courtesy of being kept in the loop about my own treatment? This is literally life and death. As the pulmonologist said, “When we slow down the AS, you’ll slow down the lungs. There’s no other treatment for them.”

Well, AS is winning. I’m not even fighting it with any real weapon. And so, I re- started the Enbrel left in my fridge. I have three more injections left. I’m scared they WILL make me get a random virus. But I can’t do nothing. Not when I have no idea when I will start to try fight this.

And so, my lives clash. Special needs mom vs chronically ill mom. Body and mental health struggling mightily. How do I manage my children’s challenging behaviours when my body is fighting me too? How do I handle the energetic bundle- that wants to do things her way-with grace when I am fighting to stand without showing the pain I’m in? When I’d really rather be in bed?

I don’t know. I just do.

And always at the back of my mind is the knowledge that though she’s not in my house, has no camera trained on me, there’s someone who’s constantly telling herself that she has it ‘easier’ when really, her easier doesn’t mean she experiences her suffering any less because of that head knowledge. It’s still awful.

There’s something less isolating when in a struggle with others also struggling, when I’m fighting alone but have them cheering me on and making me feel like I’m a winner just by staying in the ring.

Like my situation, victory is not in their hands either. They can’t employ themselves, they can’t make them selves better physically, those who are physically ill. So, I find solace in knowing we all know what suffering is. And we all respect each other for how we handle the suffering with grace and dignity.

Long may that last, even when we don’t understand why.

I’ll leave you with my angel. So charmingly excited at her first impromptu cutting lesson.