Author: Grace by any other name

God-lover

She is Right-ILD, Fibrosis Awareness

Grace by any other name1 Comment

My dear friend asked me if it’s right for doctors to not be forthright with patients. To not tell it exactly like it is. I said no, it’s definitely not right, she is correct there. (I’d told her about an AS patient who suffered terribly after they had to basically undo her bent over spine and insert rods and pins to make it straight so no longer wanted to fix her permanently bent neck. The doctor even phoned to ask when she would have the surgery. She said no.

I don’t think the patient knows what I know. The cases of people who died because their bent necks crushed their tracheas and they were not able to breathe. I saw it in a dedication post by a daughter whose dad died like that. I suspect her doctor wants to save her from that possibility. But hasn’t told her so. Hasn’t told her what can happen as the AS progresses.)

After my lung functions tests, which hurt and led to much more discomfort than I’d ever felt after some of them, the doctor wasn’t happy with the fact that the lung diffusion test also had a bad result. (We have long known my lung capacity is low.) He asked about my iron, suggested that I have a full blood count done so he could check my iron and I told him I’d had a blood test two weeks before, requested by my rheumatologist.

He then phoned his receptionist and asked her to phone the pathologists and get my results as he needed to know my iron levels.

HE DIDN’T TELL ME WHY HE WANTED MY IRON LEVELS EXCEPT TO SAY THAT IF MY IRON IS LOW, IT WILL EXPLAIN MY POOR RESULT.

We waited. And waited. I didn’t even realise how significant it was that we didn’t just continue with the rest of the appointment, end it so I could leave and he just look at my results whenever they came through. I also didn’t get the significance when he said (after the results came in and he saw the official copy) a baseline CT scan would be good, just so later when damage is visible, we can track it…After a good 10 minutes of us just sitting there, waiting for LathCare to respond to the request, I got tired of awkwardly reading a book in front of him, and decided to go onto my PathCare app and show him from there. He saw that my iron was definitely not a reason. But didn’t say what exactly it was not a reason of. Didn’t say what lung diffusion is about.

So I assumed it meant that air was not going everywhere it should be going when I’m breathing in.

But that’s only a very high level understanding.

It means that oxygen is not passing properly from my lungs into my BLOOD. This is now not only about my lungs themselves, but about my whole body. Blood is life. If my blood doesn’t have oxygen properly, we have fatigue, weariness etc. And of course, it’s not good. Our bodies need oxygen.

Before the scan results came through, I’d been hoping that perhaps I had just been having a bad day that particular day when I went to do my lung function tests. After all, I’d done them twice before and I’d never had the pain and discomfort AFTER them that I had this time. Maybe something had been off that day.

But the scarring and bands (I read my CT scan report after the pulmonologist update me and told me to go in if I feel my lungs are deteriorating, instead of waiting for our next formal review and scan.) in my lungs put paid to that. There’s a physical reason why this test was so horrible this time. Why my lungs felt like they were struggling.

They are.

And so, it’s sad that I had to find out what the lung diffusion test is about via online websites on pulmonary fibrosis. I wish he had just been open. Yes, he did say we will intervene when you can’t sing and can’t walk and talk, but he didn’t tell me that intervention eventually stops working and you die. He didn’t tell me that yes, some do live long, but the average life expectancy after diagnosis is 3-5 years.

Knowing my days are shorter than hoped would help me take each one that passes without a crisis and make it even more special to me. I’ve been very grateful that despite having AS, I can still move my neck and twist my back. Things I’d have never been thankful for. If he’d made the reality more clear, I’d have been grateful even more that “today, my lung function hasn’t become so bad that I have had to ask to see the doctor.”

And besides the Enbrel suppressing my immunity, I’d make sure even more that I don’t get sick. Last year when I had a chest infection, my husband spent a night awake, very sure I was dying because I kept breathing like I was taking my last inhale. It was ‘rattly’ and the breaths were very far apart. Now we know it’s a possibility. An infection killed quite a few of the members of the fibrosis group I was in who weren’t yet inactive and on their death beds. They thought they still had time. Each time I’ve told my friends I felt like I was dying, it was more real than I thought. So grateful for LIFE.

But

Life is full of surprises. Lots of hardship. The first rheumatologist I saw thought the never ending AS pain and constant fatigue plus the children’s extreme needs were “too much, it’s not fair.” He asked, “Why is God allowing this?”

I don’t know why. But I do know that friends who care about every aspect, offering moral support, not unsolicited advice😉, make it easier to bear.

Bearing each others’ burdens. A theme of mine lately.

And I hope I never become so self focused that I stop caring about my friends’ hardships because I seemingly think mine are more important. I hope my people never stop telling me that I’m caring and kind for remembering them. There’s room in my brain for the problems of everyone who has made room in their minds for mine!❤️

I don’t want to become the person who out of the blue writes, “Hey A, how are you? I just wanted to check on you and hear how you are these days. My lungs are terrible, I can’t sleep at all and would you believe, my loc broke and it’s the third one this year to break off at the bottom and I’m in so much pain! The Enbrel is giving me horrible side effects and life really sucks. I have nobody to listen to my complaints so under the pretense of wanting to know how you are, I’ll really update you about how important I think my problems are so that you think this message was about checking on you when really, I won’t recall how you respond, i won’t internalize your response at all because I just wanted to get off my chest how miserable I think my life is so you pity me.”

Shoot me if I become that person.

When I want to check on someone, may I mean it. May I just write and ask. And wait for a response. Even when I’m using oxygen – in 100 years’ time!

Common Signs of Interstitial Lung Disease, Fibrosis That I Had

– chest infections that become very bad. One doctor even said I’d been so worried about the children’s sickness that I put myself last, endangering my life. She reminded me that a dead mom can’t nurse the children

– crackling when your doctor listens to your lungs via stethoscope

– doctor not hearing sounds of air in parts of your lungs

– being given asthma pumps but them not helping

– dry cough

– discomfort in lungs when lying flat. Less ability to breathe

– breathlessness

– wheezing

– tiredness. This one I have only thought was caused by AS fatigue / exhaustion

– chest x rays that are clear yet doctors think you have a problem with your lungs

If you have these and others that you can freely google, please rather see a pulmonologist instead of your beloved GP. My GP kept prescribing antibiotics even though chest X rays showed no sign of infection. She never suggested a specialist. I just figured that if antibiotics hadn’t ’put any air’ in the bottom of my lungs where she couldn’t hear any, a second round wouldn’t either. I needed someone with more expertise.

A Pox on You!

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That’s what I used to read in my novels. If someone did something wrong to someone, the wronged would tell the other, “I hope a curse gets you! May you suffer for the wrong you’ve done!”

Ps 52

David was a man like that. He knew his weaknesses. He knew his strengths too. And he knew that everyone who was evil only had one place they were going to, only one ‘reward’ coming to them.

This is my strength. People may have the gumption and guts to spout absolute nonsense to or about me. They can be cruel if they want to. They can be nasty behind my back and smile at me and keep digging for information, not knowing I know they’re as real as a Brazilian weave on an African head. But their day is coming. So I’ll wait.

Random side note. Yesterday, I had a sad realisation. I was born with a club foot and feet facing ‘wrong.’ I had physio and stretches etc that were done to me to help me. At some point, I even wore special boots. Yet, instead of my ability to walk without having needed surgery being rejoiced over, my mother constantly told me to fix how I walk. I used to do ballet. You know how ballerinas toes point outwards? That’s how I walked. Toes out. And she HATED that. I was always told to “walk normally” or “properly.” I felt.. Life is not about looks or physique etc but I also grew up being told everything about mine was wrong. besides being ugly, having a large forehead etc, I couldn’t even MOVE right. I felt like an embarrassment and a shame. Which is what I had been told I was, so hey, wouldn’t you believe it if someone older than you kept telling you that?

Yet when I was older and had my boyfriend/husband, when we’d notice people who walked like that, we’d wonder if they were a dancer. He never thought they moved ‘wrong,’ he wondered if they’d done ballet! No man in his car ever mocked me for the way I walked, they wanted to get me into their cars.🤦🏾‍♀️None of my school friends who walked like me had been made to feel like they were an embarrassment. Just like when they got teen acne. I think I shared how my mom would go from doctor to doctor, not be able to pass by a cosmetic counter without asking for my son to be fixed. Yet it wasn’t even bad. It was just really a rash. Our family doctor didn’t even suggest anything medical. My mother is the one who made me wish I could fix my skin. Not my friends, not TV, not my own thoughts. My mom. And I didn’t realise I was being beaten down. I thought only the physical beatings and attacks were harmful.

And so yesterday, as I saw people walking in the shops-all different styles of walking, it hit me that I’d wasted decades fixing something that didn’t need fixing. I still automatically try walk “properly, like a normal person.” But I already was a normal person. And only at the ripe old age of 43 did I finally break free. When I realised that I saw nothing wrong with anyone else’s walking. If I see nothing wrong with them, perhaps my MOTHER was the one in the wrong…

The voice of our mother rings forever in our ears. We are’ trained from birth to love then and need them. After all, they feed us. And the world said we owe them.-whether they beat us (unjustly) or not.

I wish the world had told mothers that they owe their children love, security, uplifting, encouragement, wellbeing, kindness and safety.

Presume Incompetence

Grace by any other name2 Comments

There’s an understandable saying in the autism world, that we should always presume competence. Which makes sense most of the time. It’s usually said by those who are speaking on non- speaking autistics. Just because they can’t talk doesn’t mean they can’t think. It doesn’t mean they’re stupid.

But…I don’t know that I agree with it being presumed all the time. Yes, presume understanding and comprehension and do talk to my child. But don’t assume they understand what you are saying. I just want you to acknowledge them. When I was looking for a helper, one woman came and walked behind my child like she was a piece of furniture. If she was standing there, she gently moved her so she could get round. Yet with my speaking children, she would ask to pass. Even if I had the money, she wouldn’t be here, that’s for sure. If I need to TELL you to treat my child like they’re a human, it’s too late.

But there’s the other side which I could totally relate to in a father who wrote about how it was better when his son didn’t say anything. People then could understand when he did things that didn’t make sense. But as soon as he was echoing lines he’d heard from shows, lines that were full sentences and therefore made sense, strangers assumed that because he ‘could talk,’ he could also act as typical children would. Like..he wouldn’t throw a huge tantrum because he has to wait in line. Generally, (if people aren’t dumb), they offer more grace if it’s obvious to them that the child is neurodivergent. And I’ve seen it in doctors’ rooms too. I actually am very ok when she makes her unusual noises. Any other unusual behaviour is then viewed in light of everyone already knowing “she’s got challenges.” They know the problem lies within, not without. It’s in her brain, not in my parenting. They’ll know the child can’t control their emotions as well as a neurotypical child can and give allowance for that.

There are more smiles from strangers when she’s making unusual sounds than when she’s crying. Nobody asks, “What’s wrong?” when she is vocalising. But when she’s crying and screaming, everybody asks why…

Today, I had another reason to prefer that people presume incompetence. Cos otherwise they look daft. My autistic child isn’t going to be the same as another’s autistic child. The skills that one has are skills my one might not have. Thing is when someone complained about their neurotypical children – as they do 90% of their time- I sent a video of my screamer. The session was 25 minutes long. I wanted to show how I don’t barge suddenly into their life just to complain about my children’s behaviour. I wanted to point out that it would be a better problem to have if I had a choice between disobedient, talking children and a non talking, extremely puzzling child.

Her response included telling ME , Mother Autism Veteran, that one family she saw in a video use photos to ask the child what they want and the child would then nod or shake her head

You don’t say!! Why did I never think of that? Why not ask me if MY particular angel CAN focus on photo’s and learn what they mean? Why not ask if there’s any communication possible besides pulling me, screaming? Why presume she’s capable of not only attending to the photo and knowing what it means, but that she will then NOD or shake her head depending on whether it’s what she wants or not? Thats actually quite a big leap. I’d be so so happy if she could indicate a yes or no. I’m happy THOSE people have found a way their child is able to use for communication. But mine can’t. Ask. Don’t assume.

And who said that what my child wants is even possible? Or safe? What if she is screaming (in the videos) because she wants to throw cardboard box with wooden toys in it, into a pool of water and I’ve said no? Then what? The ability to nod will not stop her from hating the word “No.” No picture will stop her screaming for 20 more minutes and trying over and over again to get me to balance a bottle of water on an upright pen.

I truly dislike unsolicited advice. If I haven’t asked for tips, it’s because I don’t want any. If I haven’t asked for a Bible verse to ‘comfort’ me, it’s because I don’t find comfort in Bible verses. The Bible is an educational tool for me. Something to encourage my growth, not to make me feel like things are better- except for giving me the hope of a better destiny. Not unless there’s a specific verse that promises that my angel will one day stop crying and screaming and will most definitely speak or type or write. Nothing else, NOTHING else in the Bible will make anything I’m going through FEEL better. It won’t reduce the strain, stress and anxiety. And I mean those in the most psychological and textbook form possible. I live those as soon as I open my eyes in the morning. “Oh no. Another day, another three or four tantrums over wanting to eat all day or wanting to dump cardboard into the pool.” And the rest of life isn’t on pause while all this plays out. I’m still the teacher. Cook. Cleaner. Therapist.

I’ll put some video (audio) up on my YouTube version of this post to illustrate. And seriously, if you lived it every day, many times a day, you’d also want to tear your hair out if someone were to make a suggestion that implies you have not thought deeply about your problems nor tried to solve them.

Hope

Grace by any other name1 Comment

I had so much hope when I began this blog. My original one was about my hair. That was easy! There were changes to discuss, cutting it to discuss, and just sharing about my country. Going from processed to natural was a big thing and I had many fellow loc sisters following along and responding. I had community from all over the world interacting. I knew we were journeying together as they shared tips, or congratulations. I want writing to just Flydah😅(thanks for commenting here despite finding me on WhatsApp too!)

Then, in 2009 I could also share about our time doing missions in Tanzania. Again, there was much to write as wonderful and sad things were happening. Looking for our own project to run, finding AIDS widows and their children with no food. One woman couldn’t even come to the door as she had no clothes at all. We could make a difference and we did. It was lovely! There were highs.

Then my currently eight year old son’s diagnosis, his struggles, his triumphs when he stopped falling and stopped running into walls. When I stopped having to pick up an injured baby and when I didn’t have his blood on my dress anymore. There were highs! There was progress!

This time. I can’t. I can’t find the highs. I don’t have progress. Not in the things that matter most. I am still in pain. I still haven’t found out if Enbrel is working for me and it’s not surprising. I only started taking it on January 25. Instead of highs, my health is getting worse. My lungs are not behaving. And I feel it. I lie here now at 6:22am and I need to take pain medicine before I can even consider moving. That’s my morning every morning. Pray. Read my Bible. Fall asleep while reading. Feel guilty. Read some more. Pray. Feel pain. Try motivate myself to get out of bed to take pain meds. Wait for them to start working. And then try exercise if I won’t be doing too much housework.

That’s not interesting! Telling you that I tried vacuuming and mopping- well, I didn’t try, I succeeded. Telling you that those are activities that cause extreme pain so I am now stopping…What will that help? I started blogs to show God’s mercy and kindness to us, to others, to my children. I shared a mixture of interesting and disheartening things. I had a variety. Now it’s constant.

Constant pain. A huge struggle with depression. This is what is constant.

If it’s not my NotMuchofaTalker angel as above, it’s my son, especially when I’m not with him. When I’m cooking, or cleaning somewhere, or doing a video for them, or making… He screams purely for attention or when he’s angry that he is being corrected. He screams when told to get dressed. He screams when told to bath. He screams just because… Yesterday he screamed and screamed because he fell and nobody saw him so nobody said “Sorry.” So he screamed. My teen daughter went to check on him. He kept quiet. He wasn’t injured visibly. She then went back to cooking. He screamed again. My teen son went to check. He stopped. My son obviously didn’t show the level of concern he wanted. He started screaming again. Loudly. Very purposefully.

I thought of the passersby. Their conversation we could hear and wondered what they thought of the screaming.

My girl. My girl first screamed yesterday because she was stopped from putting a cardboard container of blocks into their toddler swimming pool. She then screamed later because she wanted to put her own slipper on a very tiny bear but it kept falling off. Then later on she screamed because she didn’t want to bath. Yet when in the bath she is happy. Unless she sees me. Now she cries for cereal while in the bath. So I have to hide even when she’s in the bath, not only in general.

How do I get any work done!??

And that’s the problem. Two years ago, I prayed she would progress. I hoped she would stop being so unfocused and would enjoy a toy, a puzzle, a programme on TV for longer than 30 seconds if even that. The things she enjoys for a long period of time, she stops enjoying very quickly. I don’t have money to find new things to captivate her daily! And it’s not like ALL new toys captivate her in the first place.

And that’s the thing. If I were to tell the truth in this blog, it would be heavy. It would always be constant pain. ‘Chronic suffering’ of every sort. And I don’t WANT to be that. And my reader who comments is already available on WhatsApp-she can ask me privately and does anyway on days I don’t blog or don’t post shot out health. So why blog? There is no progress. There is no’ magic bullet’ to share. And you guys aren’t autism moms anyway so you wouldn’t NEED the magic bullet. So…Why blog?

There’s no reason to. Yes, good things happen. But they don’t undo the bad. They don’t make my actual journey smoother. For two years I hoped for peace, less screaming, I wished her mind would rest…

I had hoped I would share those moments, not the ones of shutting windows so neighbors don’t get disturbed by us.

There really is no point in sharing when all there is to share is struggle. With her, with almost everyone in the family-including the medical field that is refusing to help my angel with her rib pain.

Silence is golden. I will wait and hope. I can’t do this for another 20 years. Maybe one day I’ll be back. But not here. I stopped my automatic payment due next month for this site. I just wanted to end it ‘nicely’ so you don’t think I was run over and killed or something.

“Severe” autism and AS have won- for now. I need a miracle before I lose my mind completely. I’m already drowning and have lost my joy. There is no large group of fellow autism mom sisters to respond and reply. Or AS warriors to share tips. I am alone. (With Flydah.🤣 )And she doesn’t need a blog to find out how I am. ❤️

Hoping the other handful of readers have great years ahead. If you’re hoping for a miracle, I’ll hope with you. See ya on the other side! 👋🏽

PS. My husband is not happy about that. “Well, FIND something to write about!” I don’t know… Ok. Maybe I’ll do something for Adventists on our current Testimonies to the Church vol 3. I had been considering doing it via YouTube. Maybe I’ll do it here. It’s still not about my life. But it will be WRITING of some sort. And who knows, maybe the learning centre director who has disappeared and stopped responding, will suddenly appear again. Or someone will find a cardiothoracic surgeon to fix my angel’s rib.

But…I still want my angel to be happy. Always. And only sad for better reasons- like, falling. Or missing dad when he leaves.😅

Reaping and Sowing

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I will reap that which I will sow, says David in Psalm 41. Same thought mentioned by Hosea,, and then repeated in the New Testament. Galatians 6:7-10 says,

Life has been disheartening. Extremely disheartening. This life, MY life. lost its pure unadulterated joy in 2011, the day I first started dealing with debilitating and increasing pain. The chronic low iron deficiency anemia, I could handle. Expensive – even with medical aid, I have to pay the R6000 each iron infusions cost myself. But it’s not continuous. I haven’t needed a drip of iron since 2020 and my iron has remained constant. The IBS I could handle. I knew it came every month during PMS, if I ate anything that triggered a flare up, or in times of stress. But I knew it would eventually pass. The gastritis- was not all the time- not the severe stomach inflammation that sent me to Trauma where a CT scan showed severe stomach inflammation. It was mild in early 2023 and gone this year. I hope it doesn’t come back.

I could handle the bad winters and the flus that wipe me out when my chest gets involved. I knew I’d eventually get better, or end up in hospital and then get better. But it was hard, treating the children who would have shared the viral infection with me, and also taking care of myself. (Remember the GP who reprimanded me for only worrying about the children yet my lungs were in big trouble?) But, I knew it would pass. And truth is, the less often we’ve gone to church, the less sicknesses we’ve had. So there’s a mini solution there too.

I couldn’t handle the AS diagnosis. Knowing the damage in my bones would be getting worse was a hit that sometimes still takes my breath away. “I had dreams!” I cry desperately to the Lord. I wanted to visit the sick, to do more street ministry, to go sing to the sick in hospital. Seriously!! I’ve had dying people tell me I sing like an angel. I don’t, but I think God changes my voice for their sake.😊 I wanted to be an angel before the patient died or before they went home to their extremely lonely lives (One person we saw in hospital had no family so had no visitors. That is SAD. ) I wanted to have lonely patients looking forward to visiting hour instead of watching other patients in the ward have loving visitors while they spent weary hours alone with their thoughts.

But I can’t. I won’t be able to. And the reasons not to are only getting worse.

Yesterday I felt like someone was throwing everything possible at me to finally make me break. My daughter’s paediatrician was telling me to ignore her chest pain and hope that when she reaches puberty, it will end. What??? She clutches her chest while we are seated doing school work!! She gets up to go fetch something, and the pain comes! She can’t run. She has stopped jumping on the trampoline- something she NEEDS to do even for her occupational therapy purposes. She’s not a child (in the carefree sense of the word) right now. She’s suffering. And to think I always, always was thankful that I didn’t have children with my childhood where operations and needles and X-rays and asthma pumps was normal. But now that’s gone. What did I say about being thankful and then the thing I’m thankful for being taken away?😝

I am not waiting till puberty, as he and the surgeon he spoke to said. I am going to a paediatric cardiothoracic surgeon and if she can’t help, I will look in Johannesburg. I am not going to sit still and wait like I waited while AS ravaged my bones and my lungs. She needs help NOW! Her ribs irritate her nerves! Do you know how painful irritated nerves are?? I do. I felt it with my elbow nerve surgery.

Yes, I wrote that AS is ravaging my lungs. We did a CT scan last week. The pulmonologist was quite sure that we would see nothing, but at least it could be a baseline and he could be more sure that we know it’s my ribs not opening that is causing the reduced lung functioning. Friday came and went and Monday was silent, so I foolishly thought the danger was over. ‘Perhaps he didn’t want to phone just to tell me that there’s absolutely nothing in my lungs themselves,’ I told myself. After all, he’d looked at a 2020 scan and my lungs were fine. Maybe my rheumatologist didn’t see what she thought she saw in a 2023 scan… Then the email came saying he had left a voice message after not being able to reach me. (I think he called my old number.) My lungs are NOT clear. There are areas of something in them. He didn’t say WHAT. Just that there are a few localized areas that he believes are damaged by AS that we will watch when I go back again before a year is over and that he has told my rheumatologist and primary care physician.

It was not surprising. I can’t breathe properly when exercising. But I’d let hope in. And that was a mistake. A clear scan in 2020. A scan with early AS damage in 2024. What next?

My children are also out of sorts and challenging. I looked up the meltdowns my youngest was having, just to see how other parents handle it day in and day out without losing their minds like I felt I would yesterday. It’s one thing to begin the day already fatigued and in pain. It’s another to try be something impossible to an extremely challenging child who pulls you everywhere but doesn’t always know what they want. A child who threw such loud, screaming meltdowns and tantrums that I had to close the windows so we don’t disturb neighbors. It was difficult-seeing one twin happily talking and telling me she is warm in her towel (So cute!!) while the other had to be carried from the bath -one who had been raging and screaming while in it, became louder when taken out, then screaming even louder and longer for something that couldn’t be done. (Dressing her teddy bear in specific clothes that are way too big and fall off. And she wants HER clothes on it. Even though I had even bought newborn clothes on sale at JET in the hopes she’d stop wanting people to dress her teddy in her clothes. Didn’t work. Now I need to create space and take out all clothing from the wardrobe. And that is where we store other family members’ clothes too. It’s the room with the largest wardrobe. How? Where? Where do I put them?) And with what strength when I feel broken down before talking my first step of the day?? It’s a small thing. But on top of all the other things…

But I go back to David. Despite a terrible day with no rest and nobody to cry with over how awful it was, I know God is still God. I know He is waiting for the reaping time. And I know that though I can’t do my street ministry, my hospital ministry, that I can and do minister in other ways. And I know that God sees me and is with me on my sickbed.

The first few verses of Psalm 41 assure me that what I am able to do for others is good enough for God. And that He sees me. It says,

With each patient response I give when I really just want to cry, when my older middle children make no sense whatsoever, He tells me I am good enough and will reap the reward of my kindness. When I close the windows and try figure out a plan instead of rounding on my poor child and smacking her as I’ve seen others do in public, He knows I’m doing the best I can despite the sheer fatigue and helplessness- and will reap my reward. I can’t work miracles. I can’t wake up and make her “less autistic.” But I can wake up with purpose to be better than the behaviour I’m seeing. To be the calm to her storm.

When I did my search on YouTube, the first video that came up was about an Australian mother who killed her autistic son because of behaviours like the ones my daughter has. He too was not speaking.

She’s not the first mom to kill an autistic child and she sadly won’t be the last. I don’t deserve a medal for doing what everyone who has no clue how bad it is assumes I should be doing- loving, caring, protecting, but I know how hard it is to do those things when they aren’t appreciated by the recipient and instead even MORE is expected. I know that the good I do to my children, I do to their Maker. He told me so when Christ said that whatever I do to the least of these, I do to HIM. I will not only be kind to my children, I will be kind to all God’s children. I don’t need to go to hospital to be with the sick. My phone is available for that. And so, I will do the best I can. I share my money, my heart and my time. Every time someone responds positively or with gratitude to something I share in an AS group or special needs group, I am visiting a patient. God will ease my trials while on the bed of languishing. He might not remove me from my sickbed, but He will allow me to use my feeble strength for good and not for bad.

I will reap what I have sown. And so, I sow, kindness, patience, love, tolerance, mercy, sacrifice and empathy at home and abroad. I will one day reap a brand new disease-free body and an even more loving heart.

How I wish today was reaping day. But it’s not. I wished for a sister so desperately yesterday but I had none even far away to bear my burdens with except one who despite her own worries over her niece, kept checking on me and asking for updates throughout the day. You too, as the caring concerned long distance caregiver will reap what you sow. So yes, I still can’t wait for reaping day. But I will wait. We will wait. For the trying of our faith worketh patience, boy how trying life is! But we will let patience have her perfect work so we may be perfect in Christ too. Keep sowing, even when sowing with bitter tears and hearts overflowing with pain. Sow.

Uncontrollable

Grace by any other name1 Comment

I told my friend that my worry with my angel is that she will fidget with the dressing. The very next day, she’d scribbled on it with pen. She claimed it had been itchy. Thankfully I saw no red ink directly over the wound, but it was worrying.

Thursday, it had fully closed up. I put the dressing on to KEEP it safe and told her that if it was closed in the evening, she could finally bath the next day. That same afternoon, after days of the dressings always staying put, the dressing was now off the wound. I asked why she’d taken it off. She said it “just fell off.” Yeah right.

This is our worry as her parents and as her aunt (My friend who video calls them as much as she can.) We worry that her cognitive issues and her behaviours will slow down her healing.

And what do you know? Friday morning I arrive at the hospital early for my lung CT scan and I phoned home to check how the little ones were as I left before they’d woken up. The wound was now open. And I saw when I got home to dress it after they put on a normal plaster as a covering but no cleaning, that it’s back to oozing something. It had moved to blood and then had remained dry. Now we have a setback.

On Monday, the surgeon warned her that the wound NEEDS to close up and if she damages it, she slows down healing terribly as there’s not much blood flow to that area of the leg. And that if it stays open, the higher the chance of infection again. Plus..she can’t bath till it’s closed- my other issue with it! And I have to keep cleaning it, dressing it sometimes twice a day. And guys, that puts extra strain on me- the bending over. It needs to heal.

Meanwhile, we have another issue.

https://www.youtube.com/watch?v=bddqnnyD6c0

That’s the video version but long story short, her brother has an infection and I need to sort him out twice a day and medicate. As I was doing his evening dressing yesterday, I caught my girl poking into the wound, and then telling me that her leg is sore. (She had stopped complaining of pain.) She didn’t know I’d seen her fiddling with her knee. So I reminded her that it’s a pity she’s not healing because now there are fun things she’s missing out on. (My hope being that the thought of the things she’s missing out on will overcome her huge attention seeking behaviour.)

Her dad went to go chat with her sick brother later, and he too saw her using an item to poke at her knee. I can’t recall if he said pen or what. But she’s at it. Just as we feared. She is sabotaging her own health and she’s only nine years old.

Tell me it gets better. Tell me these kinds of pathologies change, improve…I don’t know anyone who has had the prenatal history she has had. Well, I know the ones who had physical deformities and intellectual disabilities. But not this constellation of issues. It’s too much. The day time urine and night time bed wetting, the learning disorders, the struggles with academics, the self harming. All in one child whose only current label is “ADHD.”

If you’re a Christian, please pray with me that her knee heals fully. You can even pray that her behavioural issues calm down too. Today it’s still open. And I will bribe her too. Tell her we will celebrate with her favourite treat when it closes up and remains closed for three days. I’ll do almost anything. As the other surgeon we saw in ER said, “We need to save her leg.”

And me? We’ve moved into February. I was meant to work on getting my facet block injections in January. But I needed to be sure we wouldn’t have post op appointments etc. Instead, we now have to solve my daughter’s other issue. Moving rib in her left side right at the bottom. Moving and causing lots of pain as it rubs against the bones- I think I mentioned this. I don’t think I’ll ever get those injections done. And it’s spooky! The doctor has never ever had a patient with moving rib cartilage before. He even called in his other associate and she too had never felt such a thing in her life. He doesn’t know the next step. I’m waiting for him to get back to us after he speaks to a cardio thoracic surgeon and to the surgeon who did her knee operation. If I hear nothing by midday on Monday, I’ll search for surgeons myself. But I’m scared we will need to operate. And ribs and surgery are a whole new ball game for my daughter. I’d really thought my children had escaped living my life of a childhood marred by sickness, pain and hospitalizations. It seems not.

And I am sad.

Between a Rock and a Hard Place

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I think I’d have made a terrible ‘normal’ mom! I just can’t do it. It’s not in me. Those mums who in their presence of their tweens and teens would tell me they couldn’t homeschool as they can’t stand being with their children? I don’t get it. Those children are old enough to turn on their own programs, read their own books, help with chores and have conversations that have a beginning and an end and make sense to both parties.

My life isn’t like that. My girl pulls me and demands food too often. This week, I lay down on my bed with a huge sigh of relief and not a second later, she burst into the room and immediately came to my hand to pull me. I told her, “Nope. No way! I need to rest! I’m not going with you. Come sleep with Mommy.” She screamed “Shleep!” Then daw” and ran out.

Then she returned with a doll! Ran out again and fetched her teddy. And so we ALL lay down except..we didn’t. The dolls did! But she has no concept of safety so didn’t realise that she was constantly right at the edge. And wouldn’t budge when I tried to move her towards me, away from the edge. It didn’t work. Lying down wasn’t happening as I was sitting up trying to roll her over, of sliding her bum over..,Lying down was just as hard on my body as not lying down. So I got up.

Her behaviour in always wanting me to go somewhere with her is the reason we have been looking for an autism learning centre. It’s for the sake of the other children that I want to send her to a more therapeutic learning centre.

So why does it feel like I’m sentencing her to a prison term? Why am I not following up with the director who I’m meant to be seeing who runs a centre that would suit her? Why do I feel so torn? When she backs into me expecting a hug, my great melts. When she deliberately looks into my eye and smiles, i I want to hold her forever. And that’s the problem.

I enjoy her. It’s not ALL gloom and doom. And sometimes she does wonder outside with the others before coming back in to look for me. And even the food she’s always wanting? I love seeing her open the correct cupboards and drawers to get herself a spoon and bowl.

I enjoy being her mom too much. I enjoy her presence. I enjoy her. And that is why I am very relaxed. Maybe the director will e email today. And maybe I’ll make a plan for her. But I’m not sure she’d survive

Her dad feels it too. He doesn’t know whether she would even thrive without mommy there. My angel needs mommy. And mommy seems to need her angel.❤️

Please God, Give Me a Break

Grace by any other name1 Comment

“I can’t even celebrate good news because it’s tinged with negativity, and because something else comes up. When will I just sit in the normal turmoil and trouble I already have? You know that even an old rheumatologist heard the very abbreviated version of my life and told me You were unfair in making my life so hard. Can’t I get a break?”

Words I’d say to God right now.

I’ve told people who care, that each aspect of my life on its own is enough to cause strain and continual stress. But now when it’s all combined and on my shoulders, it’s unbearable. Yet bear it I must.

We have solved the heart issue- a little bit. If you call beta blockers a solution, then yes. But if you think it’s great, they’re not. But I can’t even rejoice that at least her heart rate isn’t a problem because now we have yet another problem.

I think we have floating rib syndrome. I hope I’m wrong. I hope it’s something we can fix. I hope it’s nothing major. I hope it is not as bad as I think… My same Ammy whose knee hasn’t even closed up yet, has complained of pain, chest pain for a long time now. We all thought it was linked to her heart but given I had two heart rates on different days both under 100bpm, it had to be something else. So today I asked her to describe exactly what this pain is like.

She said that it’s like something is loose in her chest under her ribs. Like it’s flapping around. It hurts when she breathes in, when she’s jumping and when she’s running or walking fast. I tried to feel.

Her rib is loose! It’s horrible! It clicks and you can feel it grating in her sternum as it vibrates the bones when she moves it back and forth. Her other side (right side) is normal. There is no moving rub. I can only think lf floating rib syndrome. But I have never studied it. It’s just a term I came across long ago and just sounds like it.

I’ve emailed the paediatrician to ask who to see. Her knee has not even closed up yet!! Why? Why is this poor girl suffering so much this year? And when will my heart get a break from anxiety and worry??

Birth Mom?

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You folk! I almost didn’t tell birth mom that our girl wasn’t great. She was trying to get a job- went for an interview the very day she was admitted. She had trial dates thereafter…

And I know how guilty she always feels when our girl has a problem. But I figured I should..just in case. So I told her.

Today, my girl asked if her birth mom knows she’s still not well. Did I feel happy to be able to say YES!? And I told her the truth, not only does she know, she was the first one to ask how we all are today, how things are going with healing and recovery.

I’m so, so happy! Happy that our girl knows she matters to her birth mom, and happy that we found each other despite the social workers lying to each of us!

God made a way. And human ingenuity and care made things happen. All to the betterment of my girl. I told her that I told birth mom that she’d asked if birth mom would have been able to afford therapy if she’d stayed with her. I told her that birth mom not only definitely wouldn’t have, but she herself told me while we were in hospital that she is so grateful for us, because she would have not afforded the medical care we could provide.

It’s sad. Very sad knowing your child would be untreated for many conditions. And subject to our not so great South African medical system. I can’t imagine being birth mom and losing a child she loves so much.

But I also know that I am keeping the promise I made years ago before we even knew who our daughter would be. When I promised I would take care of her just as I would my biological children. Nothing has changed. She’s my baby.

She’s our baby. And we love her to bits.

She even helped me do some scolding! I told my girl many times, even before we left hospital, to remain still. To stop being too boisterous. To keep her knee as immobile as possible and do other activities like watching, reading, colouring in…Anything that won’t need her knees.

Yesterday she was caught crawling around in the garage. Today I caught her kneeling. I told the surgeon that tonight in ER as she examined the still oozing wound that ‘should have’ shut by this Sunday. And she reiterated what I’d said. NO!!! She added that there isn’t much blood flow in that part of the body so things can break down if they’re stopped from healing well. And that while it stays open, other bacteria can enter and do to her what the others did that got us admitted to hospital.

I hope she listens. Even birth mom told me to tell her calm down a bit. But Ammy then sent her a video telling her that the brother “tempts” her, so she’s not sure she can comply. 🤣😫

We’ve come a long way. ❤️ Birth mom doesn’t hide when we walk about our girl. All is well. Now our girl must heal. Surgeon says the wound itself might heal and close up Saturday. Hoping we can try control her. Don’t ask me how unless I forget all other children and just sit with her all day every day.

I’m happy birth mom is sticking around. Proud of her!

Limbo

Grace by any other name1 Comment

Wow. This sounds like one of my titles to my old blog posts when I didn’t know what was wrong with me, was SURE there was something up and was waiting for the test results to prove it.

How wrong I was…The tests did show it. But those who looked at them were blind.

And on a side note. Here’s another reason (as if one should have ever been needed) to not say to someone who’s found out after over a decade of searching, that they have an incurable progressive disease, “Hey, at least you know what it is now!”

Firstly, it’s not much of a silver lining finding out that all the years you sought a cure, there was none to be had at all. s I’ve said before. I wasn’t looking for a name, I was looking for a cure.

And today’s reason? Knowing doesn’t reduce the suffering that made the person seek help over and over again. Knowledge – in my case- didn’t change anything. It just gave a name to the grinding, grating hip bones that feel like they’re going to grind each other into powder when I walk.

It means I knew why I woke up with stiff fingers that Mr immediately noticed were swollen. It didn’t get rid of the pain nor the swelling and knowing doesn’t help when even the things I can try to help reduce the pain, cannot be tried.

And thus we come to “limbo.”

My girl’s knee started swelling. Not the same area that it began in last week, but Sabbath (Saturday) when I had to remove her dressing and clean her up, we both definitely noticed the raised area on the side of her knee. And even photos showed it.

Yesterday, the area was still there, and has been warm to the touch. Not good. And she tells me today that she didn’t sleep last night because of pain. Even worse.

I’ve never had a surgical wound that was left open, so I don’t know how they behave as they heal. So I sent photos to the paediatrician. They said I need to see the surgeon today.

I contacted the surgeon…She’s operating all day today.

Limbo.

In the meantime, we continue with antibiotics. And I try lie down and hope it’s something that won’t need hospitalization.

My poor angel is scared the infection will never leave and she will need an amputation. I told her we have much more we can use in our arsenal of weapons. Amputation isn’t an option in my head.

And hey, maybe it’s not even infection anyway! I don’t even know if I SHOULD worry. I just know heat and pain when there’s been infection are bad signs. Add increased swelling, and no idea what the next step will be and WHEN it will be.. and we have..

LIMBO