Hope

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.😅