Bring Her Back!

I need Violet! Someone bring her back!

I have a dear friend nearby who keeps reminding me I am welcome to go rest at their flat. Who asked this week what she can do to help.

But I don’t even know. The children don’t know her, she’s also sick and broken and can’t get down with them to play. But also, I can’t go away. I had planned to when my eldest had been around, but then our fecal impaction patient was headed in that direction again so I had to be around to medicate. And honestly, I feel bad that their father already puts so much on the eldest two. The number of times I’ve said, “But the twins are not THEIR children, YOU are the parent!” can’t be counted. So I don’t want to add to their parentification despite my daughter insisting I go rest.

This week is probably one of the worst because I’m fighting at the same time the children are fighting. The AS flare from hell is still here. My stress levels are also through the roof. And that’s not because of the usual mayhem and chaos, but also extra sickness. And that’s the other reason it’s good that I didn’t go and rest this weekend.

Poor Ammy slept the entire weekend and didn’t eat. Now as you know, given her girth that has sent me to another doctor’s appointment for her this week, not eating, sleeping, are two red flags. ADHD people can’t sleep all day unless they are very unwell. She had a headache from hell. Sunday, I overheard her asking her brother to turn the light off and I got the hint. Migraine. Could this poor child also be fighting migraines on top of the challenges her brain is bringing her??? No!!

But, after I emailed the doctor her symptoms, the LACK of a fever, the malaise and desire for darkness, how long it lasted and how headache pills didn’t help at all, his opinion? Migraines.

I’ve never had them. But I know how cruel they are. Someone who has rhem described AS as a migraine of the body. How does a little girl deal with that?? I had pain day and night since I was three years old, but my mind was only fighting parental negativity, not fighting itself like hers is. And above was the paediatrician’s response. Migraines it seems to be indeed. Poor girl!

I hate seeing my children suffer. Watching them suffering consumes the pieces that aren’t busy dealing with a six year old demanding rice crackers at 5am like my one twin did after she had wet the bed and I had to go change the bedding and her pyjamas.

She too was already sad about her sister yesterday. How will she handle another day today? Not because of a migraine, but she seems to have caught a weird flu or cold from Twin B who also has it. Mostly blocked nose and crankiness, fatigue and a side of irritated

And so, again during the week I couldn’t go rest at Elaine’s place. Who would medicate the angels? Who would be watching over Ammy, ensuring she remains hydrated, and keeping track of how often Miss We Do Not Want to Return to Hospital is pooping?

The same one who had to do it over the weekend. And so, she asked what she can do to help me. And I had no idea what to say.

It’s like it all rests on me. Reminds me of the psychologist assessing the children asking me what would happen to them if I died. Elaine’s question has no good answer, because the one thing I CAN ask of her, she can’t do because she’s also broken. Just to be with the children during the weekend so I can rest a bit in between the meds and the planning. I need that. But she can’t give it.

And I think that’s how so many of us end up isolated and so alone even with special needs resources like the West has. And that is why that Australian couple with two autistic sons ended up killing the children, themselves, and the dogs. People asked why they couldn’t “at least” spare the dogs.

Because the dogs would miss them.

I hate and fear dogs but I’ve seen the way they mourn their owners. I’ve read of them traveling miles (it’s always overseas so that’s why I use miles) to go back to an owner that had given them to a new owner. Why would they make the dogs suffer pain? It was an act of mercy. And this is two parents dealing with the strain. I’m just one. I get them, even about the dogs.

Crazy that an anti suicide Christian gets what non Christians don’t.

And thus, we circle back to mental health. I had to go to Ammy’s post test result review with the doctor who will be in charge of her birth control and seeing what works for her PMDD. See? How can I sleep when I have to sit and hurt my back and pelvis waiting, then seeing a doctor? My dad used to say to me “Refilwe-Rose, you see!? No rest for the wicked!” when he’d want to be working in the garden, then bake, but instead an unplanned visitor appears and disturbs his plans.😆😅 That’s how I feel. No rest for the wicked. Do something productive while other productive things wait, but there’s someone (or five ) needing entertaining right then.

I’m typing while medicating my blocked nose girls (Ammy and Twin B) for their sicknesses and answering calls about her migraine medication. First one was because they only have the generic, second to ask if I’m “ok” with the co payment I’ll have to pay.

I’ve been paying copayments since February. I have no choice. I’ve paid R3500 this week and now R59 today. At this point, I think of the pharmacist who said she feels sad that I will never have money to treat myself because it’s all going to medication. Who needs rest, relaxation and rejuvenation!?

And I need help. And this is where Vi comes in. As she so sagely said, “Mummy, you need someone who doesn’t have children. Then they will be focused on working. You need help every day.” (The facilitator had been gone for two days because his baby had a skin infection. My children asked why the mommy can’t take care of the baby and why he has to be gone for two full days yet he’s also going on leave the entire following week. I had no answer. Some people are born to be parents more than employees. But autistic children need as much routine as possible.)

But, every one who came close to being a good helper has children. And our current in probation young lady knows how far from ‘close to being good’ she is at the moment. Another strain. It doesn’t help that I’ve had two great employees so I know what’s possible. Contrary to the Zimbabwean who said I expect too much when I asked why she’d walk past a table made dirty by children’s 12 o’clock meal, to leave at 16:30 when our formal agreement upon finish time is 17:00🤯

Siyagezeleka thina oomama abantsundu. They’d never act the same with white bosses, and that’s a cry many Black bosses have made about domestic workers.

Anyway! If Vi was here, she’d tell me to ignore the crazy happy noisy twin B who is up till midnight. The night from hell was made less hellish because of her. The night that happened after the father had refused to take Twin B to hospital. During the day after the refusal, she’d seemed to be better. But two nights later, he in Japan on holiday, me having asked Vi to sleep over, she was sick sick sick. Screamed and cried and needed to sit on me but only on a chair. She wouldn’t let me lie down with her. My back and pelvic bones were so bad I asked the children to wake Vi up.

She did.

And not only did she sit with her for a while to give my body a break for 30 minutes, she acted like I was nuts to want to take Twin B back after I kinda recovered. She said she’d sleep with her, seated if need be. And told me to sleep.😭😭😭I couldn’t. So I got her an extra blanket which I know she didn’t want me to be doing.

Eventually we all slept. She refused to rest during the day and not clean. What kind of employee wants to work all the time? Being her back!! 😅And then Friday saw the hospital trip from hell when I ended up phoning their facilitator to come help me.

And that’s the other thing. When I do ask for help, like asking the father to take his daughter to hospital, I don’t get the help.

Just like when I learnt at age five not to bother my parents when the (now we know it’s AS) pain would hit both my legs from knees down, and I’d be in so much agony I couldn’t even breathe. It’s so upside down, this world.

The doctor who is meant to be treating Ammy’s PMDD has no idea. She only knows that Ammy on her own, is too much for me. And knowing what the other children’s conditions are and that I have AS,, she told me I’m “faking it very well” but there is no way my nerves and nervous system are not raw from the stress and strain.

We agreed on a plan for me. I’ll see her for mental health help. Not therapy. But medication. Something to put a cover over the raw nerves so that they aren’t tortured as much as they currently are by each assault. (Her words)

Good plan.

It was breakfast time just a few hours ago. Helper had put the chairs on the table. I was about to bring one down but the children’s facilitator stopped me, saying he would do it.

Readers, my stupid eyes (not I!🫣) wanted to cry. Do you know how embarrassing that would have been? But it shows how barren my life has been. You saw the videos where the father is playing on his phone while I’m taking heavy garbage out to the bin outside. You’ve seen how I’m the only doctor and nurse and therapist. You’ve seen how I asked him to learn the children’s vision work so it’s not just me doing the exercises each day but he refused.

It honestly came as a shock that someone would notice I was bringing chairs down, and stop me.

She had better bring all the meds for my nerves. Who cries over someone being helpful with chairs?? Bring the meds…As long as they don’t cause weight gain. I’ve lost a lot of weight through hard work and with AS, I can barely move so I can’t try stay stable by exercising MORE. And I do not want to end up like Amarissa on diabetes meds.🥹

Why is life so complicated, people!? Wouldn’t you just love a year with no chaos and suffering? Just one year out of the decades we’ve lived? I would! What a reset that would be!