Red Carpet Funeral

I’ve never organised a funeral before. Nobody was there to really guide us, my dad left everything to us and didn’t even ask how we are paying for it all.

When she died, the ambulance came and took her to the hospital morgue. Because she’d died at home, the hospital said she’d have to go to a private morgue. The neighbors suggested Mguda Funeral Services.

Wow, wow, wow. I knew nothing about when death certificates are applied for. Knew nothing about death registers, undertakers…

My mom died on a Thursday. Friday morning, I asked my dad what he wanted us to do regarding the funeral. When should it be? He wanted it ASAP. So did I. The grieving family has to provide ‘snacks’ (scones, muffins and tea or drinks for the people who come and people come every day at different times. It’s hectic! And tiring for my poor 93 year old dad who is frail and felt he had to keep leaving his room to go greet people, go listen to the sermons offered by different congregations , street people, church women.) Where will the services begin? (Started at home where a viewing was done together with a quick sermon, then church and another sermon, then cemetery and another sermon).

What time should the body arrive? My dad wanted it to sleep in the house overnight. Thankfully, he also told me not to forget that I was his and my mom’s firstborn, so whatever I want would happen. I didn’t want her body all night in the house. So we arranged for 8am arrival time.

I took my daughter and middle two to go view the body on Saturday afternoon and we glanced at coffins together with my husband who just went for moral support but didn’t go view. It was surreal. Me? Discussing coffins? But I don’t feel old! (He left the next day so it was just me and my sister planning -and me paying for- the funeral. He arrived the night before the funeral)

Monday I went back with my sister. We chose a not expensive coffin that came with a package. “A package?” you ask.

Why yes. The coffin came with 50 order of services/programmes, a coffin spray, chairs at the cemetery, decor, a stretch tent, some cars to transport out of town guests, water… A PA system and a slideshow.

This particular package cost us R41 300. And unlike the randoms who kept bothering us for the death documents so they could go claim, I didn’t have a funeral on policy on my mother. It was all coming from our pockets directly. Good thing we’d just received a bonus! Not a single soul offered to help pay. I got used to us collecting money at church to give to the bereaved, and in fact, three of my church ladies went to see my dad (Their first time ever. They’ve never even visited ME in my home ❤️) left a financial love gift.

But I did it. We found a ‘package’ that was even cheaper than what dear husband had thought we’d get.

The front car is the hearse. And the other three were the cars for my dad who didn’t drive, and for car-less relatives.

When they said they include 50 bottles of water. I did NOT picture this…

I also hired (Not through the funeral service people) a normal public transport bus (Golden Arrow) for church members who wanted to go to the cemetery but had no transportation, and fridge for the food, toilets , stoves for cooking on, food…A cousin bought a sheep or two (You can tell I’m vegan. I have no clue how many), and her daughter gave some drinks. (After the funeral, people usually go to the home of the deceased and eat lunch provided by the grieving family.)

It was hectic. It was stressful. It was EXPENSIVE. And it is over.

As for what I believe about the dead? Eccl 9:5. My mom is dead and waited to be weakened by God during the resurrection. (1 Thess 4) I don’t believe the dead go to heaven. Think of all the people who were resurrected in Bible times.

“Hey, I know you’re having fun in heaven, but your mom really wants you to go back down again.” Said to the boy who Elijah raised.

That would be weird. I believe we are sleeping and our breath goes back to the atmosphere, or to God.

And one day, all death will cease.

And we don’t want all this expensive stuff. Bury us asap so the grieving children don’t have to be stressed. And we aren’t having any sermons. Just a memorial service and cremate my husband, and bury me. No people constantly ringing the bell and my children having to feed people all week.

What’s Going On??

Tomorrow I see the surgeon about whatever is going on post op, deep inside. Not the actual wound, but below. Started with a small big pea-sized lump and it’s now a huge area of pain. Well, as big as my hand. Woke me with a huge wallop this morning at 3am and is still aching badly. Literally felt as if something smashed me inside.

I’m scared. I’m scared of the costs of diagnosing the problem, and what will be entailed in fixing it.

I got a call from the rheumatologist’s rooms. The PA said that after long deliberations, I’ll be put on Enbrel. She had said she would send forms, but I haven’t received them. The next step will be to send motivation letter to medical aid.

I’m so scared. I looked up the costs. They are impossible! Google says you’ll inject yourself every week and that depending on the dosage in each injection, I’ll pay between R4300-9000 per jab! That’s weekly! No way I can do that! And my med aid plan is one of those that orders have 100% said didn’t even pay the 80% the more expensive plans pay.

I need this. I’m in so much pain that I can’t even do my AS exercises themselves. And the thought of it progressing without me at least slowing it down… I have my cane. But I want to have the opportunity to feel so well that I don’t have to use it.

When will my body cooperate?

Let’s hope the cause for the pain is diagnosable and fixable. In an affordable manner!

Next up-the red carpet funeral.

Sudden Epilepsy???

So, Sunday, Mr father was discharged. They say he has epilepsy. They didn’t observe any of his attacks, they didn’t do any ECG or brain scan to figure out WHY, but they are sure that his episodes of not breathing, losing consciousness and coming close to death, are caused by epilepsy.

My sister took his prescription that the hospital sent with him to the local (tornado) clinic. They refused to give her the medication, saying the hospital should have given him the first dose. But the family friend who fetched him from hospital was told they don’t dispense medication, that she must get it at the clinic! So now that, my poor dad must go be seen by the clinic doctor physically, then they will give him the meds. Poor old man. And what a system! It’s a hospital discharge form! Surely that’s enough evidence that a doctor HAS seen him. Especially given there’s a doctor’s name and signature on it!

What did they prescribe valproate, Vit B12 and multivitamins. I googled the valproate. If you have any first hand knowledge of it, please do share, because google makes it seem like the side effects are horrible!

I’ve still heard nothing from the rheumatologist. So it’s a month now since I did the biologics work up and I still have not been on any treatment.

I ordered a cane yesterday.

Life Sux

Sorry for the wording, but it does.

My father is now a widower for the second time. And he’s not doing ok with it-understandably. The first time, I hear he wept and wept daily. This time, I only witnessed tears on the day of my mother’s funeral. It was terrible.

And now it is worse. He’s been in and out of hospital this week. He was sitting in a chair on Tuesday and suddenly couldn’t breathe, lost consciousness…Ambulance took him to the nearby day hospital and two days later they discharged him.

That very same night, it happened again and he’s now back in hospital. And this is not a nice hospital. It’s government, not private. And one of the worst I’ve been in, in a terrible area.

When I used to visit my mom, I was always shocked by the bullet holes in the glass doors. Gone are those doors. It’s now heavy metal bars that someone inside controls. You can’t walk in… And same with the gate. You get out your car, greet some guy who is probably be a gangster (Svhool children get shot to death en route to school in this area for Coloured people), and have to wait for the automated gate to be opened by someone else. A guard whose shed I think is bullet proof. And there are many security gates before you can enter the actual ward areas.

You come out, and the guy who could be a gangster is still there talking to you, telling you he kept your car from being stolen. And you know…Though nobody ever stole your car before, you have to thank him by giving him money.

The ward is one large ward for men and women. Lights on always. Shouting by the demented or psychotic patients mingles with the moans of those in pain.

No aircon in this cold weather. No warm blankets. My dad had two from home and still felt cold.

I went to the hospital again yesterday afternoon and was told he’d be discharged. There was no doctor with whom to discuss his diagnosis. They didn’t tell him anything. They gave us prednisone and when I asked the nurse why, she said it was for his chest. He wasn’t coughing or anything but get…

Just a few hours later, after getting home, it happened again. Lost consciousness and difficulty breathing. Again, my sister had to go to the nearest police station to meet the ambulance there. In our Black areas, some criminals attack ambulances amongst other types of vehicles, so the ambulance needed a police escort.

This time, the diagnosis is epilepsy-no brain scan done. I hope a doctor witnessed an attack. I hope they know what they are doing, I wish I could ask them myself.

As for me? Pain. I have some swelling and pain and hard lump where the needle was removed, and my body is just bad. I emailed my rheumatologist to ask where we are in the process to get my meds covered by medical aid, and emailed the surgeon to ask about the increased pain.

None have responded. Emailed rheumy six days ago and surgeon a day ago.

Sigh

My poor dad.

Black Funerals Are Horrible

I’ve always agreed with my husband that we don’t want a pastor. Just do a quick memorial service and cremate us.

Now that I’m on the other side, I see even more how draining it is to lose a close relative. The undertakers, the policies people had on your loved one that they went to claim from and want the death certificate for, the choosing of coffins and ‘packages.’ Do you want a fleet of undertaker cars to transport the bereaved coming in from out of town?

The muffins and scones and drinks you have to give the people coming in to bring condolences… The tent for the cooks, the tent for the ones who won’t fit into the house, the people coming in and out from all congregations that heard the news. Preparing bedding and beds for non-local relatives. Hiring chairs for the church congregations coming to do services before the funeral. Hiring chairs FOR the funeral. Hiring large gas stoves and pots to cook for the funeral goers. Buying the food for the funeral goers. Buying plates (we are doing disposable) for the funeral goers. Paying for funeral programmes, buses to transport people from the church to the cemetery. And if we didn’t live within walking distance of the church the service will be at, we’d need the bus to transport people from the home were the first part of the service will be, then to the church, then to the cemetery. Getting drinks for the day of the funeral… Hiring toilets…

Why didn’t anybody warn me!?

Just do what my husband’s Muslim colleague’s community do. All the ladies in the community who know, get together with their own pots and ingredients and help cook for the funeral. And because the burial is ASAP, there aren’t days and days in which to feed people coming to condole the family.

It is extremely unfair that the grieving family is expected to pay so much for extras. I’m going to put in my will that my burial must be asap and no people bothering my children. My poor dad is hardly resting because he feels he must entertain all the people coming in and out the house. We are using so much electricity boiling kettles to make tea for people…

If this is what it means to be Black, count me out.

I’m an honorary White.😫

I Don’t Have a Mothet

This is weird. I now have experienced what people go through when they forget the person is deceased and still think they will see them.

I saw a message from my sister’s colleague saying I should call home urgently. But I was busy preparing for my appointment in a few hours. Then I saw a call from my parents’ neighbors and I thought, “Ok, something terrible has happened. A terrible injury, or a death… My going now as opposed to later will not change the outcome… A call from my half brother-son of my father came in and I knew. “One of my parents is dead. I’d better get the children’s lunch and diapers etc sorted.”

Then, a message from the relative who told me she and my mother didn’t want us to adopt and God had cursed us with twins for doing so… How ironic. My text above her one telling me my mother had died was saying, “Wow, innocent children. Thanks for showing me your heart.” You can’t make it up.

So, I told her I had an appointment to go to that I canceled because of unplanned surgery and I didn’t want to cancel it again do I’d go later to the house. . I don’t even know how many grand children to put in the obituary. I don’t even want to plan one.

It is so, so complex. The night before, I’d looked up a whole lot of word on narcissistic mothers. And as I approached the house, sipping up my jacket, my thought was, “Uh oh, brace yourself. She will tell you you’re fat.”

Except she won’t because she’s no longer alive.

What a sad life, that all your daughter can think of about your parenting recently is the vitriol your sister spewed, and your negative comments on looks.

I lost a mother.

But not a loving, caring mother. Just a mother who looked good to outsiders. She didn’t even know I’d had surgery. She knew nothing about my life when hers ended. She missed out on wonderful children who loved her deeply.

Right now, I’m frozen. I did weep. But only when I got home and realized that out of all the relatives and family members milling around, coming in and out, only a distant aunt cared enough to ask how I am, and to ask about my children. And she spoke very positively about homeschooling, upset that the government is clamping down on it. wanting to arrest us if we don’t comply to their laws and South African curriculum and paying for external people to test our children annually. My teens and MANY others have done just fine without that.

So yes, I wept over ONE person caring shot me and wishing me well.

That is the upshot, I lost a ‘mother’ in the true sense of what a mother should be, long ago. I don’t know if I ever really had one. And, some ‘strangers’ care about me. Unlike what my mom thought, my life as an educator of my children is not a waste in their eyes.

Weird post. Weird life. Grieving what could have been… Maybe it’s better this way. I started the grieving process long ago.

Well

Yesterday was awful. I woke up feeling drugged. I was so tired that I wanted to cry. Even my husband was concerned. But, I couldn’t rest.

I guess I know why… My body was working hard to create more chaos. So we have the huge joints, and my shoulders, a knee, my fingers, feet and now this. You know how you’re meant to rest when tired and pregnant as your body is creating a human being?

That’s how I feel. An exhaustion I can’t combat. Fatigue I can’t fight. But chaos around me that I need to try control. Like checking my one twin isn’t pulling anything off my shelf and turning around to see that her twin has taken something I just finished ironing and is playing with it.

Like being so happy that they love the flowers I was given. But having to sort the mess out. I could sleep for hours. Alas, homeschooling parents of little ones who don’t have support can never rest.

Many doctors focus on the pain, but the fatigue is also a hugely detrimental symptom for us. Let’s see if I’ll ever get treatment that will help.

ADHD is Annoying

So says my eight year old ADHDer. I am pretty sure I’ve mentioned how she is very hard on herself. Extremely hard on herself about her perceived weaknesses. From ADHD itself and her forgetfulness, to the common co-morbidities that tend to come with ADHD-the learning disabilities or challenges, they all combine to make her feel like a failure. I’m one of those relaxed parents. It’s not about me. There’s a lady I know whose child was obviously neurodiverse in some way. She recently had the child assessed because of the struggles she was having when helping the child with homework. In her words, “I am intelligent. I got frustrated thinking I have a child who’s slow! Helping her was just too frustrating.”

I’m definitely not dumb, but my biological son’s being behind by a year doesn’t reflect on me. I just taught him according to his ability. No skin off my nose! And same with my other children. Their (dis)abilities are about THEM. “How can I help THEM do better? Is it possible? If not, what can we do instead? How do I make this less stressful for them so they don’t feel stupid?”

And so, I changed curriculum to one I’d seen recommended by Christian parents of neurodiverse children. And I started a grade level below where she’d been struggling, working as slowly as possible, and ignoring or turning a blind eye to the problem areas -such as number reversals like the ones below.

She’s eight years old. We use computers s lot these days. And…She’s eight. We will trace every now and then, create the numbers and letters out of play dough, and one day, it will click. Why stress her when I know the number she is trying to write?

Slightly tangential but relevant. I thanked a friend today for how she approaches parenting and what she shares with me. She too is an adoptive mom. Her children are neurotypical and participate a host of sports and dance and do well! Yet what she focuses on is worrying about her son playing rugby and getting hurt-not on whether the team won or not. She worries about her daughter being tired and over worked. HOW she does in her dance competitions doesn’t matter to her. The prizes aren’t important. She just enjoys knowing her children are happy. I can definitely enjoy her updates about her children.

On the other hand, you have the mother also of neurotypical children who’s always posting photos of her “beautiful” children taking part in this and that, their amazing achievements and the awards and prizes they got. For a mom like me, even before I had differently abled children, I couldn’t get behind such parents. I remember a relative telling me their child came first in their class. My immediate thought was to retort, “So did mine.”🤣 (We are homeschoolers, so…😉)

My first two children were academic achievers. Even now they aren’t too shabby, they got one C for their IGCSE exams and the rest were A and my son got one A*. But I don’t boast about their achievements and never did. I taught them to read at a very early age. By age three and four, both could read three letter and four letter words. By five and six, they could read adult texts fluently. My sister-in-law used to visit, and she would take them to the aquarium and to the museum and when there were people around, ask my children to read the descriptions and information written next to the exhibits, just to shock and surprise people, who would invariably ask, “They can read!?? How old are they!?”

But I never recorded them reading. I never sent it to anyone. I never told anyone. Because my first aim in educating them is to have them become kind and helpful citizens, not amazing academics.

And so, with that mindset, this poor mom and her multiple posts about her children’s achievements was always going to do down like a lead balloon. Add the challenges I have with my neurodiverse children, and you have a mom who does not want to know. It hurts. It triggers a pain that goes deep. I hate that my children struggle. I hate that my daughter feels so bad about herself.

She asked me what the point is in doing a grade she understands when we will have to go up a level and she will flounder again. She had asked not to do Maths at all, because of her struggles. It took a lot to convince her to try. Even now, when counting in tens, whether looking at a number chart or not, she will say 80, 90, 20 even though she knows there’s a difference between 19 and 90. I just quietly drill, making sure I use the chart more so she sees it while saying it, and so I don’t have to correct her.

Yes, ADHD is annoying. The untidy room, the lost socks, the crazy wild movements that bump other children, the fidgeting that tears her clothes and pulls her hair out are annoying sometimes. But only she (and her teen sister who just doesn’t get it no matter how often I explain ADHD and give her videos to watch) feels annoyed by ADHD constantly.

I just feel a general sense of sadness, not annoyance. Last week she said she’ll never have a job. I asked why she would say that. She said she would be fired for forgetting things, and learning in university would be too hard for her anyway, so she wouldn’t even qualify for a job. I told her that there are different kinds of jobs. She could be a caregiver in a nursing or retirement home. But she then said she’d forget her duties. I told her she would write them down as she underwent training, and keep the notes with her. She would also see what other caregivers were doing and copy them. And if the elderly people could talk, they’d remind her too. And she would maybe even be able to explain to the boss that she has ADHD, and concessions would hopefully be made for her. Who knows?

I hope she will internalise it even though she doesn’t believe it right now.

“Mommy isn’t annoyed with my ADHD. She loves me and wants me to be happy.”

Copy and Paste

Another edition of “What I wrote on the other forum.”

I was told this week that the AS is progressing. I was MEANT to see my rheumatologist in August and THEN have a discussion about next steps but the office phoned me this week to tell me it’s time to take next steps NOW.

(For the benefit of new ‘friends’ I’ll just say this. When you have found a cure for Ankylosing Spondylitis, talk to me. Otherwise, I’m not here for ‘remedies.’ I’ve spent 20 years living in the natural realm and everything I tried even BEFORE this year’s final diagnosis is the best out there diet and supplement wise.)

I’ve failed both starter meds and we are moving onto the big guns. Thankfully, I’m not scared of needles, because these will be regular injections for the rest of my life-unless I go into remission. I know some who have gone into remission and after being like that for a while-they are allowed to stop treatment.

Yes, it sounds like fighting incurable cancer because it is incurable. Some might go into remission fast, and some go through all the different biologics (the big guns) and still the disease progresses. THAT, is scary.

Long story short…

“Too late for that!” You exclaim.

One of the first (so I’ve seen) biologics that they use for many of us with our different autoimmune diseases is Humira. (She didn’t name them last time. Just mentioned the impact they have.) All biologics tend to reduce your immune system’s ability to fight disease. That’s after all the aim-to stop your BODY FIGHTING against itself so terribly. But some, like Humira, leave you wide open for TB to come wreak havoc inside you.

So, I went off to do a Mantoux test-They inject you with a bit of TB bacteria. (Or something along those lines! Doctors I’ve seen like asking if I’m a medical doctor because of the jargon that apparently rolls of my tongue so easily as if I’m trained -but this one was new to me.) Then a few days later, you go back and they see if you are positive. If your welt is back and raised quite ‘high’ then you have been exposed or have TB (dormant or not) and for my purposes, cannot take Humira unless I take TB tablets for the duration of treatment. NEVER!

So, off I went to do that and also have chest X-rays done.

Bravely wearing my warrior hoodie by Tk Taku Madzandefor that is truly what I am, and I mean it.

If healthy moms can shout at their children, lose their tempers, only a warrior can-according to her children-keep her peace and be “always so nice” despite the constant hum of fatigue and pain that builds to a crescendo by 4pm..or earlier if it’s flare time.

This Sunday, the you Net children came into my room not 5 minutes after I got done with a bit of laundry. One of them had the temerity to put their legs right on my surgical wound. I wanted to laugh. And cry. Ella came in, saw how they were all on top of me and exclaimed, “This is chaos!” And deserted me!

Only a warrior keeps going when the war is going against her instead of turning tail and running away. I’m getting worse, but I haven’t taken ‘disability’ leave. I’m still teaching, still taking kids for assessments and therapy. And many rightfully do go on disability.

And the best of all?

Despite how unfair my life apparently is -children with extra support needs included -I can still smile, and smile genuinely.

That gives me warrior status when you’re so exhausted that it feels like you’re wading though thick mud while carrying ton of bricks and have no energy.

The most RECENT comment was a cashier (again) telling me that she had to call the supervisor to over ride an error she had made as she she “was distracted” by my smile. Another was, “Your smile is so genuine! It reaches your eyes!”

I’m proud of me given what that smile hides.

I’m not earning much! I’m going to cost us a LOT🥹(Our medical aid plan doesn’t cover the meds at all and they’re in the thousands every month. And there are the tests I’ll need still for my liver and kidneys before I start) I have five children with extra support needs

But I can exude happiness ANYWAY.

As Paul said, “For I have learnt in WHATEVER state I am in, therewith to be content.” My version.😊
For we wrestle against bad angels, and higher powers, not against humans. Again, my version.

AS WARRIOR!

I was content 17 years ago when ‘poor’ and washing our clothes by hand, back and swollen fingers hurting but grateful there WERE difficult formal work pants to wash.
And I’ll be content today even with the call telling me “You’re getting worse.”

(Or die trying to be!😉)