It Has Begun-The AS Chronicles and a Court Order

The descent into further sickness has begun. First it was the increased pain, worsening stats for my walking. My walking steadiness is also decreasing.

With the number of steps I have to take perhaps I’m overdoing it, I thought. As you can see, the improvement I started feeling at the end of last year was as real as the decline I’m now feeling.

But now, I am also swollen. It has begun. I started feeling stiffness yesterday when I got up to walk. My joints are cracking more and louder when I move, even my hip! It’s a loud snap like something has been cracked apart. Amarissa even asked me, “Why does your body crack each time you move?” It’s scary. When I sit down, crack, crack, crack. When I shift my weight when standing, crack! I sometimes look at the person I’m talking to wondering if they heard it.

This cracking is chronic inflammation where the ligaments and tendons enter the bone that causes calcification at the joints. Ie new bone forming at the meeting point. As you move, sit etc, they react. It’s also due to fusing and friction . It’s basically, a daily reminder that the medicine you’re taking is truly only slowing the disease progression down. It’s definitely not a cure. And that, is always a horrifying reminder.

When I was diagnosed, I had to mourn that not only would I never be cured, but that each day that passed, was the best I could ever be. The following day, is going to be worse, might not feel it, but it is a steady downward fall. We can’t stop it. And my lungs attest to it just as my feeling it in my body and just as my health stats do.

And so, dear reader, imagine how I am suffering having to be physical caregiver from 6am until 10pm when the last child can finally sleep. I told my eldest son last night that this morning it will be his turn. Sometimes I drive our loud little lady at 6am so she doesn’t wake her siblings. Yesterday I got her to stay in a room far away and she allowed technology to keep her soft. And my breaking my back bouncing her on a ball. Unfortunately, most of our cameras aren’t keeping recordings and we don’t know why. Their father is wondering if we should subscribe to a cloud service. Which costs a lot (but not even as much as one night in his Tokyo hotel.)

And this what I hate. Every thing I do to be a present mother, hurts and worsens my condition. Today, I’m going to email the paed and ask him to also add my 11 year old to the education department’s waiting list for special schools. I found a private school that seemed to be different to the others that want autistic children with average or above average skills and emailed them. They do fit her with her learning disorders and inability to ever do academics in the near future but with only a (current) ADHD diagnosis. I start her DISCO autism assessment tomorrow. An hour at a time, I go answer questions about her. I will take my water and my eye drops. I keep forgetting and that’s for shorter appointments and struggle to see when driving home.🥹 But yes, physically, it is HARD raising my special angels. I have a post planned on the difference between homeschooling them vs non challenged children.

I don’t even have a father for them. My talkative twin was so excited to tell him T got rid of a splinter that was fully under her skin and hurting her and he didn’t say a word. I guess it’s better than when our eldest girl told him she got 94% for an assignment and he replied by sending her a work link that he’s now on the Board.🙄 He’s always out going to go do his marathon training super early and for hours. He doesn’t care that he’s a father first, before he’s a ‘use all our family money that he claims I am finishing’ to pay hundreds of American dollars to enter the races, and then tens of thousands of rands for the flights, food and accommodation.

My plan is to ask for an anti dissipation interdict. See, being married in community of property, legally, he had no legal right to have sent half a million to his cheating on wife one and wife two brother against my express wishes. And of course, no legal right spending any money of a significant amount without my express agreement. The ‘in community of property’ marital regime was “designed for the protection of housewives who give just as much to the family as the breadwinner does.” And so, I will have to use the law because he doesn’t acknowledge me nor the God whose whole law is also an ‘in community of EVERYTHING’ law.

I just don’t know how. I don’t even know how I will find the regional court to apply for divorce! I don’t even have strength to go to the shops anymore. Let alone go and find it somewhere in town, and then queue? I don’t even know how it works. Now court interdicted for anti dissipation orders?? No clue. If you do, please share. It’s a court order to stop him giving our money away to the randoms he’s been giving it to, and to stop wasting our money on his personal unnecessary activities which REDUCE his already very limited time being a father to his children and take a lot of our money away. You do it when you’re planning divorce.

And please pray that I find someone to help me do this. I wanted to search yesterday, I found out about it while searching in the morning, but then my girl -who has been awake and noisy since 5am today, but is playing in her room for now- got out her bedroom and the day was just too busy. I need time. And four special needs children, planning, cutting, researching and a weakening body do not allow for time to sit up searching and asking coherent questions. Don’t ask me who I will ask as I don’t have a lawyer yet.

The swelling that’s beginning, and stiffness are in my lower back and fingers. Winter is clearly going to be the usual poop show it has been since I was an innocent high school pupil. 🥹

Like I hate ‘non communicating’ (weird phrasing) autism, I hate AS too.