Author: Grace by any other name

God-lover

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

Grace by any other name1 Comment

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.

I’ve Got It!

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Today’s exercise gear- winter is here

I always used to not get it! Wow, that was grammatically messy. I never used to get it when they would say AS is worse when not moving and better with movement. After all, the more pressure I put on my AS joint, the more my leg buckles and a sharp pain shoots through and I cry out.

That doesn’t happen when I’m lying down!

Today I finally got it.

I almost didn’t get out of bed but..you know..they clam that CHILDREN NEED A MOMMY. So I got up. Almost instantly, the excruciating “Why am I still alive” all over body pain disappeared! It was now more specific areas that hurt. My SI joints ten minutes into a walking exercise session, my fingers which I out gloves on, and my head and neck.

It still sounds bad, but it is far better than the all over body pain. I really thought I’d have been dragging myself around and wanting to sink into a puddle and just cry. But I don’t. Not when I made myself get out of bed.

Now I understand the whole “Move, you will feel better” trope. Except when your joints are damaged and the arthritis is in your joints, it’s indeed that you will feel BETTER, but definitely, not OK.

And that’s ok. I’d rather feel this than the pain I felt before I got out of bed. Scary how we swop around the type of pain we’d ‘rather’ feel. Scary and sad that we (those in my shoes) have not yet reached the, “I have been great but then a flare came up” stage.

Maybe it will come. Let’s keep hoping!

Head, Shoulders, Knees and Toes…

Grace by any other name1 Comment

It’s not even funny. I have been getting headaches for the past two weeks. It’s only this morning that I realised they coincide with my increasing neck struggles. Whether I take the pillow away or not, my neck is suffering. The night was bad and my headache is back. And I finally clicked that they are linked.

Cervicogenic headaches

I’m considering taking some of the first tablets I tried-sulfasalzine. Just to see if they at least reduce the pain and swelling and stiffness in my hands, fingers, knees, foot. I feel like I’m wearing hard knee pads or.. like I’ve got concrete in my knees. I don’t have many, and you have to start on a low dose because of the bad side effects, and it takes months to work. But I’m desperate. I will take it slow because the side effects were horrible and hope. I don’t even know what to hope for.

I have been finding solace in AS groups where others come along and post their woes. My South African group was full of posts by people whose meds are working so occasionally had flare ups but were generally under control. The larger groups where there are many of us (Over 7000 while the SA one had less than 1000) have been a lifesaver. I told a ‘brother’ that I feel like giving up. But I can’t. And just a day later, someone had posted, “I don’t suppose giving is an option, is it? Because I really want to just give up. I can’t take this anymore.”

I get you, sister!

And so, I go to the groups. But even that is not helpful. We are stuck. People here think America is the land of plenty, but they have plenty troubles too. People whose insurance denied them the biologics they need. People side insurance suddenly stops paying for a biologics that has been working perfectly. It’s not that amazing there. Americans too, don’t have it all. Nobody does.

It’s perverse, maybe. It sounds wrong, perhaps. But when I can only feel the disease getting worse, I am grateful that I’m not going through it alone. You have days where loved ones focus only on their issues and don’t even ask how you are. I go to the groups. I see someone in my AS shoes tell them, “Same here! I’m sorry!” And then I feel seen when replies come.

I just wish there was a group for “Homeschooling AS moms of autistic children.” I might have said that before, right?

Someone posted that they don’t want negativity, only positives under their post, people must share the things that help put them in a happy place. People spoke about their children, their dogs, their expensive adjustable beds, how grateful they are that they’ve found biologics that are working for them, how they have time to read lots because of being stuck in bed resting all day. I should be so lucky!🫣 That was one post and set of comments I couldn’t relate to. Yesterday was a hard day where you couldn’t ignore Autism because she caused lots of suffering. I was praying hard to survive till night. And resting that both girls would sleep. Both are having increasing sleep problems-the twins. It’s hard to handle increasing pain when you have increasing parenting struggles. I had no positivity to share. The replies opened my eyes, instead, to how hard my life really is. How alone I am. It is VERY rare to have multiple neurodivergent children with learning disabilities while this sick too. Hmmmmmm

And yet. I’m not angry for trivial reasons like some meme that shared research on special needs parents started. I don’t snap at my children. I don’t lose my cool. So, I must be’ ok.’ More ok than I thought. I could feel or act worse.

There, I managed to pull a positive out of my ‘chronically yours’ life.👀

I pulled another one out just as I was about to ask my girls who always ask how I am, for prayer. My husband left his car behind. So, my son can go drop his sister off for her exam and then return. I can then still have my car for any emergency or anything that pops up, and then I will go fetch her. I’d been about to type to them asking for prayer as I didn’t know how I’d survive the drive to the school which is NOT close by, the long wait-over two and a half hours-and then the drive back in peak traffic. My staying home alone wouldn’t have helped either. Yesterday’s ’cry a lot’ twin is too heavy for my bones. Getting her into the bath and changing her diaper etc would have been too much for me. But now I have an option to make things a bit easier on these here bones. I might not be able to stay in bed all day, but I reduced the extra suffering that would have been inflicted on me.

No News-Saturday AS Awareness Day

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Faking being ok even though she told me not to

I’m seriously going to use the last three injections in my fridge!

Medical aid finally wrote today. I’d been waiting and waiting and had planned to email the nurse to ask what’s up.

Well, what’s up is NOTHING. Medical aid wants a letter of approval from the rheumatologists’ panel, and information from my doctor about what medication I’ve had and for how long. THEN they will decide if they approve or not.

This was not the email I thought I’d be reading when I opened it. I can’t even say I’m waiting again because I don’t know if the panel has met. I don’t know when they’ll meet. I don’t know why my doctor didn’t send the info together with the initial application anyway. I’m disappointed, folk. I hurt. I hurt. I’m getting even less sleep than ever. My neck, my shoulders hurt at night on top do the usual back and elbow pain… Today, I drove my daughter to her final Biology practical exam prep session and the entire way there and back I stopped myself from telling her that my foot hurt every time I moved it to brake or accelerate. The rheumatologist had felt it even before I consciously suffered from it-the damage and swelling in the front of my foot where it joins with my leg. I have NEVER had that area that sore before while driving, driving was actually ok for the foot and only bad on my SI joints and lower back.

Well, all bets are off. It’s like Satan has slowly been letting out bits of the fiery pit and sending the flames to me and now it’s getting hotter and I didn’t know it could. I know I always wonder how BAD someone’s pain is when they complain. It’s not like I can feel theirs and they can’t feel mine. Maybe compared to mine, it’s virtually nothing. Maybe it’s the same, but telling me you’re in pain ain’t enough. Is it keeping you awake? Can you ignore it and it remain in the background of your day?

I am suffering incredibly especially today after the long drive to the school (Let’s just say they were all shocked to find out where we live when my daughter mentioned it, and wondered about heavy traffic coming in), after waiting for class to finish, and the longer drive back. (Longer due to traffic.)

I already can’t sleep- pillow or none- because my neck and shoulders are fully in the mix now, not only my elbows, fingers and si joints.

I want to start treatment. I want to be better. I wanted to do a movement activity with my little ones this morning but couldn’t, I would take a step and leg would give way and an unexpected bullet of pain would streak through my SI joint and cause me to yell in pain.

I need the medication.

I don’t know when the panel will meet. I don’t know if they’ll agree that I need the mediation. I don’t know when my rheumatologist will do her part.

I just know that I feel like I’m losing my mind.

Please God, help me. I don’t want to buy a walking frame because of my leg that suddenly goes on a break when I need to use it. But I don’t want to get used to limping and shouting out unexpectedly. I don’t want that to be my norm. I’m too young for this. I can’t do this. I will go insane. So, please help me.🥹

And no, there’s a reason we are stopping the injections I was on. If I do end up desperate (I still have till Saturday for my “No injections of biologics till two weeks past surgery” rule to take effect, then I’ll inject and be worried that it will again reduce my immunity TOO much and I’ll catch a sickness and then I’ll get approval but be too sick /still sick and unable to start. Not that I know how soon my pharmacy will have it. They don’t stock biologics as not enough patients have them to justify them buying them without knowing there will be a patient who needs them. It took two weeks for the Enbrel to be in stock at my closest pharmacy.

What do I want you to be aware of?

The patients who are so desperately in pain, who have ‘failed’ their treatments and know that tomorrow will be even worse than today. I looked up voluntary assisted suicide on Sunday. Someone with AS did do it. He was in Canada. His loving wife cooked lovely soup for his last meal. I want you to be aware that there are some of us who are like that. So desperately aware that only death brings release- certainly not night time no matter how many pain killers are in our system.

I haven’t reached that stage yet. I’ve only failed one biologic. But I know the PAIN and wishing for death so it finally ends. We aren’t only the successful people like Whitey Basson for whom AS is almost meaningless. We are ones who feel like we are dying daily, (And whose lungs actually are.)

The Club

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😅

I shared the above this morning in the SOP Reading Club that Claremont SDA Church has formed. I hope it will be a blessing to anyone else out there. A blessing and an encouragement.

Jesus was never cold and unapproachable. The afflicted often broke in upon His retreat when He needed refreshment and rest, but He had a kind look and an encouraging word for all. 4T 488.1

Good morning🙏🏾

This reminded me of the patience mothers also ought to have. I recall from
AH how “frequently the call of mother, mother is heard…” and the mom has to stop whatever she’s doing and patiently and kindly be interested in what interests the child or care about their little woes even if in mom’s mind, it’s nothing.

This is so hard especially when sick. Like the disciples, I’ve even heard my older children telling my one twin 4 year old daughter to not come when I’m resting, but she will insist, “I need to see Mommy! I want to talk to her.”❤️🥹So I often yell out that it’s ok, she can come into my bed.

When I told my children that my recent appointment proved that my pain was truly increasing as things were getting worse, my 17 year old exclaimed, “But you’re always so cheerful! I didn’t know!
Mom, you really don’t need to force yourself. It’s ok to rest more and to not be so happy.”😅

That’s what matters most. That THEY feel seen, loved, cared for and secure. I want them to see the Saviour’s love through me.

I will apply that to whatever we are involved in and in whatever sphere we are in. May we ever be patient and warm as opposed to “cold.” Welcoming even when we need “refreshment and rest.” May our “they” that is watching us see Christ’s love and patience through us.

Yesterday was awful. I am usually awake by around 5am to study God’s word-on weekends. And during the week it’s 4am. (Mainly because my husband wakes at 4am so he can also do his study before going out to run before work.) It gives me time to try get the stiffness out my bones so I can exercise a bit.

So, I woke up. I couldn’t shake the pain and stiffness. 6:20am I was out the bedroom and moving but still, the stiffness and heavy pain persisted. You know how AS includes swollen bone marrow? It’s as if every single bone in my body was struggling with it, not just my pelvic bones. (Maybe they were! I just only have had MRI on my pelvis and that’s where we know for sure my bone marrow is swollen.)

By 8am, I was struggling. I struggled to take bedding off the bed. Then I wanted to lie down. On the unmade bed. I didn’t have strength. I am now always using the little ones to at least put the laundry into the washer for me- I did two loads yesterday/ usually I do three. We are eight! We have a lot of dirty clothes especially when there are ADHD girls who soil their clothes daily. Badly soiled. Who forget to wear the T- shirt they put paint on that I now keep as their ‘eating top’ so their clothes don’t get food on them. My poor nine year old eats like she needs a huge bib. But I’m too busy to remind her at mealtimes to put it on before she starts eating.

I did go grocery but there too, I struggled. I had to lean against the till behind me. My word, yesterday was horrendous and I’m still unable to bear weight on the worst leg even now at 5:16am. The pain was indescribable. Just folding four pieces of dry laundry killed my shoulders too. I wanted to weep. What is the point in being alive if I can’t do much?

I’m SLOWLY tightening my nine year old’s locs. I just can’t stand long and the fatigue is all encompassing. So, there I was in the evening standing doing her hair before evening worship. I’m in the left bottom corner of the security camera.

I was weeping silently. Before this, we’d been listening to One Voice singing I Can Only Imagine. It was already emotional. Just to imagine myself able to RUN to God, able to kneel at His feet without pain, imagining all of us in the family-me and the children-made whole…

See, I’d made my for old pictured at the top of this post, cry. Like her twin who’s hated us touching her hair forever, she’s now also not into her hair being washed. But it has been too long. I started preparing her last week for a b hair wash. She kept refusing. My teens had said they’d do the hair so I don’t hurt myself. Except my poor angel was too stressed and was crying and her sister just couldn’t do it. I went into the bathroom, told her I was just going to wash her hair with plain water, it had been too long, and just water, no shampoo THEN water. (Hey, anything is better than nothing.) The tears rolled down her face. We have those little rim cap things that ostensibly prevent water flowing into their faces (doesn’t really do that very well but it’s better than nothing) I asked her sister to hold the face cloth over under the rim of the cap thing so no water rolled down into her eyes and just ran as much water as I could over her hair, squeezing out and scrubbing the scalp as much as possible. But the tears came. “Mommy, why are you doing that. Please stop, Mommy.” It was awful! I felt so sad for her.

I could not wash her twin’s. I was in too much pain by then. So the teens will do it in batches-mostly really just using a very wet cloth and shampoo for her because she’s even lied about to handle her hair being touched,

It was a combination of pain, heartache and hope that led to my secret tears as we watched. I truly needed to feel raised because I was down. It was emotional, watching my not very talkative angel standing mostly still sound while the songs were playing. She too feels the emotion in the songs so doesn’t do her usual racing around.

I watched videos of dads talking about their autistic children, the dreams they had that they’ll never be able to fulfill. Playing with their children, playing ball…It was truly cathartic to cry as they too wept. I get my support and validation off my feelings from the emotions other parents are feeling that mirror my own. The suffering when the world hurts the child- light, noise, people, whatever… It’s a terrible worry, not being able to make life easier for them.

And so, I wept.

Usually I go hide in my room at prayer time as sitting with everyone during worship calls my daughter to come sit on me which strains my bones. Add the womb pain and I definitely haven’t gone to pray in the evenings. But every evening, she’d come running anyway, insisting that she has to talk to me.😅So I decided to stay so she doesn’t feel the need to burst into my room. It worked. She got her fill of me and didn’t follow me into the room.

And my heart! She kept trying to sit staring at my face while hugging me with one arm around my neck. It felt kinda weird too, being stared at while singing!😝But it just showed me that yes, I’m unable to do as much as I would have liked, yes I had even googled to see if anyone had ever done assisted euthanasia due to AS suffering (found one in Canada) but I couldn’t leave this world yet to rest even if I wanted to. So I took a photo.

My children need me in whatever state I’m in. I hope we can all have the energy to bear our children while sick. To love them when we too need loving and nurturing. She doesn’t care that I didn’t finish putting her clothes in her wardrobe, that I didn’t finish ironing her underwear. (We have spiders on the washing line. Almost everything gets ironed. More so after Ammy’s terrible hospital admission due to an infected spider bite) She just wants me. And I’m here. That’s all she needs. And so while I wait for release from this suffering, I wait knowing my children would prefer it that way anyway. Waiting. Not yet released….

Can You Say, “Thou??“

Grace by any other name2 Comments

Baby girl broke out into King James English!

It has been an interesting day. Typing this at 20:56. My husband asked if I’m “at peace” with my worsening situation. See, yesterday we went for a walk and he had to stop me. Make me stop and realise…I was panting. We were walking slowly (too slow for my liking!) yet I couldn’t converse and breathe normally up that very mild incline. So. In light of that new situation, yet another sign of declining lungs, he asked if I’m at peace with disability caused by AS moving forward, If I’m ok with never being able to hold (carry) our future grandchildren when we see them. I told him I don’t even know that I’ll be alive to see any grandchildren anyway.

It was a sobering day but I didn’t feel sad.

So this next event brightened up the mood considerably!

Here’s the thing. I talk to my girl all the time. The males and my teens don’t get why I’m so insistent on talking to her. Slowly, short sentences and using lots of repetition. The teens don’t get any feedback from her, and they assume she barely understands what they do say. My son said as much when I asked him if he’d warned our girl in advance that our new helper star would be caring for her and her three siblings while I took him and his teen sister to their exam venue.

He replied grudgingly. “Yes, I told her, but I don’t think she understood anything I said anyway.” I told him that that didn’t matter. He just needed to keep using short sentences and speaking anyway! On the way to town where their exam venue was, I told them about an autistic who started speaking very late. That’s when I found out my son has given up. He thought my daughter had no chance of ever using speech. Ever.

I think my husband also felt the same. This evening, while they recited the fourth commandment, our girl chimed in, “Six days shalt thou labour and do all they work…” As clear as a bell!! A very loud bell! Her twin sister- who usually keeps quiet- decided she didn’t want to be left behind, so she yelled the rest of the verse loudly!

It was crazy! It was a cacophony of sound! It was BEAUTIFUL AND GLORIOUS.

It was a fitting way to end the day while thinking of how my husband saying, “So…Maybe there is hope for her!” I had thought it was obvious to him that there’s always hope. Till the day she dies, I’ll hope. ☺️

I know that it’s wonderful that she recalls the words and says them in perfect timing. It’s amazing even if it’s pure echolalia.

We are happy.

Helpless

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I’m not sure what to do. About 19 years ago when we first moved to this area, a White man (my husband’s boss, actually), told us it’s very closed up. People like us aren’t exactly welcome. And I’ve certainly seen it in some groups.

But I never figured that it would mean that they don’t want our money either. Which it should have. Look at how hard it was to find a rental because people didn’t want to rent to Black people. Not even to sell to them! What apartheid nonsense is that!?

I’m stuck. Terribly stuck. I’m in increasing pain. I can’t drive far. But our occupational therapy options are nonexistent. One didn’t reply when I told her we couldn’t afford her services but would contact her when things improved. No acknowledging that she got my reply. Plus, she talked down to me like I’m a dummy. But I had been willing to ignore it for my daughter’s sake. Also, she at least had the grace to admit when wrong. (I’d told her that I believed my daughter had a visual processing problem and she disagreed with me. But then while doing her assessment, a visual area was touched on and it led to her adding a visual assessment that indeed confirmed my fears. But.. No human ‘soul’ in her and no written report after the assessment.

Another one, she would want to be paid YESTERDAY, but would make us wait MONTHS for the report. Hardly fair! And always an excuse, no apology.

I contacted one. This one, I’d actually been sent to by our son’s neurologist. But back then, this OT gave me to an OT who didn’t even have training in what the neurologist had pointed out needed therapy. She gave me to the therapist above who twice, took MONTHS to give reports🤦🏾‍♀️I emailed this year asking for help for my daughter.. silence. Given her disinterest years ago, and the disinterest now, maybe she only wants clients that look like her.

I contacted another one. I told her I was not available on Tuesdays (only three of them, specifically) so we need a different day to start the process if we were to begin while my first daughter is using more Tuesdays to be taken to Somerset West. She suggested..TUESDAYS!! I replied that the next Tuesdays were out.

Silence. And even the Tuesday offer came because she had gone ghost on me after I replied to her about the children and asked for a session! I received no reply to my request. I ended up re-sending my email that I had sent. And to that, she chose a day I had made sure to tell her I couldn’t take 🙄

I truly don’t know where to look for help for my daughter. Her executive functioning skills need improving. Same with my son. They need those foundational skills.

Where to find it???

Exams!!

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I am so, so anxious! The teens got A and B for their first set of AS level exams and now they will be doing their last set. If they pass, they’ll be DONE! I can’t picture what that will be like.

They’re extremely sure of themselves while I’m nervous. Very nervous! They haven’t flunked any past papers that we used for practice, but my son struggles with Comp Sci paper 2, only getting 50’s till the last paper he practiced. That was with having found videos from his previous year (one level /grade down) to make sure he knew the foundational principles before I got him more of this year’s AS level videos and it helped- so he claimed. And my daughter didn’t do super well with Biology 1 at the start of our prep season. Hoping they do as well as they did with their last practice! I’m nervous, did I say that??

I hope we are done. It will be a long time till we find out! August 20 something!! In the meantime, we continue with our university applications. And she will also apply through Mediclinic for their nurse training too.

Life is good.

I am limping a lot these days. My respiratory rate is too high. As in, “You are sick” high. It was like that before my bronchitis, now just worse. Normal is 16-20. Mine has even reached 30 on some days and this is while asleep. Or just sitting still. My average is 25. I’m breathing faster than I should be. Which makes sense. Your lungs do that when they aren’t passing enough oxygen to your blood, which my diffusion test already proved anyway.

My blood oxygen once went down to 82% this week. Which I wouldn’t have known till my husband traveled for work and used his ‘pocket’ money to buy me an Apple Watch that measures your blood oxygen levels.

So, I’m still dying.

And my bones are bad. Real bad. Can’t find a comfortable position. And I haven’t heard back from the rheumatologist about our start date which matters because woohoo!! I don’t have to plan surgery yet! My hand surgeon said we will give my nerve four more months before we operate. He is hoping it will settle down. But if not, the surgery will be “bigger” and worse. Which I already figured

Life is good.

I was limping along coming from the orthopedic surgeon when I told my friend about the good part. She and I have always mourned the twin bond my very talkative twin, Neilo, wants to have with her twin sister. (By the way, she doesn’t want us to wash her hair. Now I have two four year old girls who don’t want their heads touched. HELP!) There are times Neilo just wants to hand her something (not even a hug or holding her) and she will refuse.

But in the bath, Reo slides forward till she’s almost squashing her poor sister.☺️ And yesterday she happily allowed Neilo to pour bath water on her calf. Neilo was so pleased that my heart almost burst 😍

Today, I caught them taking spoons for their breakfast. Both girls standing there with the kitchen drawer open. Each had more than one spoon in their little fists already! But Neilo took some more and handed one to her sister, which she took and kept close to her chest. Man!! This is what brings joy. I want to live long enough to witness 40 more years of this!

And you know what? Yesterday as I hugged R in the kitchen. She hugged me. I knelt down to squeeze her tight and she rocked and hugged my head tight. ☺️ She played with my hair, she was so loving. The moment was long. Who needs spoken language during such moments anyway?

I don’t need to hear “I love you” when I can feel it.

And so, I carry those moments in my heart. Nothing can take them away. I may lose my breath walking up to my car, but I’ll never lose that moment.

Life is good.

And….For the first time ever, I left the four little ones in the care of someone else. Someone who’s not one of our family of eight! And it went well! My minimally talking angel laughed and laughed at her. And allowed her to change her diaper while my very talkative Neilo was in a rush to get us out the house so she could be alone (with her three siblings) with Aunty V. 😅”Bye, BK! bye Ella! You can go now!” I hope it works out. Then at least next year I’ll have a help when the teens go to university. Holding thumbs!

Oh, I didn’t tell you? We felt the teens should focus on school during their exam season, so I hired someone to do the housework last month. Reo loves her. That’s our litmus test. If R loves the person then we are fine because she’s the hardest to please. Also, she herself loves the children and doesn’t treat R like she’s got no brain. (Thinking of the woman I tried who would walk right past her or behind her as if she’s a chair, while smiling at, or talking to the others.) This ‘aunty’ understands that behind the ‘non-speaking autism’ is a normal little girl.

I came home and she was laughing and laughing. She had laughed when the aunty changed her diaper too. And to think how worried my eldest was. He was extremely stressed about my leaving the you n er four ‘alone’ with aunty Vi. He thought our girl would panic or run away. But nope, they had the typical hiccups we’d have, and then got along famously.

Life is good.