They said I should write a book

I hate that I homeschool.

Scratch that.

I hate that I’m so sure that I SHOULD homeschool my children. I hate that I’m so aware of my principles and values and of how there’s no affordable (read-government) school that has such values or principles.

I hate that I’m sick.

I got my results back from last Friday. We are meant to be moving me to Enbrel injections (Anyone with any experience, chime in!) and I had the tests done for baseline. And I’m sure to make sure I’m healthy enough to begin.

Now, last week, I told my friend that my kidneys felt sore.

Yesterday, my results returned and I have mild kidney function impairment. I thought maybe I was crazy last week, but it seems you CAN feel pain when your kidneys start struggling.

I won’t even go into the emotional and mental ramifications of that result. I was expecting the one result -and therefore happy that my inflammatory markers were high as it would reinforce to medical aid that I really do have an inflammatory disease going on STILL since my first tests in 2011. But the kidney one was a shock. Yes, I had kidney pain last week but…And I’ve had it before and brushed it off.

Till Google claimed you DO or CAN indeed feel pain.

I don’t know what that means for the Enbrel.

What I do know is that I’m so tired. I thought it was purely AW fatigue but I read that struggling kidneys can also cause fatigue. And I’m not able to fake energy as well as I used to. The cashier today asked, “How are you?”

I told her, “Ag, I’m fine. And you?”

She replied, “Well, you don’t look fine…”

I thought about it and thought to myself, “Well, I’m actually not ‘fine.’ Can anyone with a chronic illness ever be fine when they are sick for life? But when I say I’m sick, I mean the flu etc. When I ask my friend with cancer how she is, I mean above and beyond the cancer, which is always lingering. (Thankfully, it’s CML and basically has been undetectable for YEARS. )

The cashier then adds, “You look tired. But hey, school holidays are over. You can go home and rest now that the children are back at school.”

Me, “Well…”

It’s been a bad day. Pain. Fatigue.

And the silver lining? The twins are both napping! I got to iron a few things and I’m going to mark. I get a breather of sorts.

But sjoe, I really wish I could come home and rest. I know a few people who have had to take disability due to their AS. They get to rest at home. I can’t.

And honestly, even if I wasn’t married to the home education idea, the meds I’ll be on are too expensive. We will never be able to afford them AND school.

So what will I hope for?

I’ll hope that I stop wheezing, and that my meds provide the amazing relief other patients have had.

I’ll pray that the fatigue and pain disappear.

In the meantime, I’ll chuckle the day after another mad day in my crazy house, where all the children go nuts either in teen rebellion or autistic meltdown or have gone plain old ‘angry throw non matching things up in the air because I can’t fit them into each other.‘

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.

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.

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.😫

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.