Yesterday’s Yikes

Someone sent a happy birthday message and I thanked them. Then I reminisced on how my father had great genes because many of that part of their family are just not aging. My niece still looks like she did 30 years ago! I hoped they all had a long life, “though I’m becoming crippled.“

The reply was to tell me to just be “happy and grateful “ as my birthday is a day of happiness.

Yeah, easy for others to pretend I’m not suffering. Especially when they’ve never actually tried to understand what active Ankylosing spondylitis does. I am still in touch with the Cosentyx nurse, I have some side effects that I’m not sure the cause of- yesterday I had debilitating diarrhea. Is it the sulphasalzine or is it the Cosentyx? Both cause tummy issues and I had gone back onto the sulphasalzine/Salazopyrin because of how relentless the suffering is- but not back at full dose- only half- because that vertigo really frightened me.

This is a card made by my nine year old. She was up at 2am which incidentally, was when her noisy younger twin sister was also up. I am too scared to hurt her by asking what she was trying to write, but I do see the part about my being sick.

My girl looking at me… I tried to tighten her locs yesterday. I was seated. But just moving my arm hurt. It was like my shoulder and back were burning. I’ve never had that struggle before, reader! Ever! I ended up not doing even ten!

And speaking of locs, her twin sister went through a time when she pulled her hair when angry and some are extremely loose (my girl’s hair is very thick but very soft. It’s almost like older baby hair texture, it has never become kinky like ours. And so it gets out of the locs very easily even though she has had locs for long enough for the hair to have fully loc’d. So now she has bits flying around, she herself plays with her hair and breaks some locs

And in my mind, is aggression and violence. Her little sister still gets angry and violent. And my other non talking twin is the same. If you dare say the word “sorry” to someone, not even to her, she lashes out. She did so yesterday while I was doing my girl’s hair. I told her I couldn’t do much because of pain. She said, “Sorry, mommy” and whack, suddenly the other twin smacked her or tried to scratch her face, it was so fast I couldn’t tell. But the victim was calm. “What happened? Why did she do that?” I told her she’d said sorry.

This should not be my life. I should not be falling asleep on my feet. I should be able to do my children’s hair. I should not be worrying about violent children. Nor should I be worrying about my nine year old who seems to be having auditory and visual hallucinations. Voices telling her to do stuff, and seeing my deceased father doing stuff. The voice one happened while she was awake. I’m hoping she just had a lucid dream when she saw my father entering our bathroom and carving into the wall in blue that he died when this child was that age, this one this age…

I should not be in extreme pain and increasing disability..

More importantly, I should not be dealing with people who want to act as if my life is perfect. I had a typical, normal day yesterday. I can’t escape. Birthday or not, special needs are there, I have to teach, I have to mother.

And I have to accept hard things. Like how my non talking twin is not interested in learning or engaging. She has specific portions of the learning app, Starfall, that she wants to do. You are meant to count the number of items in a container and then pick the correct number of three choices given. She just wants to pick. If it’s wrong, she goes to the next choice. She isn’t interested in my counting the items first, instead, she pushes me out as is her norm- Well, yesterday she asked me for cereal before pushing me out her room.

I felt helpless and sad. She is just too busy to take much in. She repeats oft repeated phrases in educational videos but I don’t know how much she understands from it. I just know that true happiness, is impossible. For me to pretend my day is stress-free because it’s my birthday is impossible.

And I will make no apologies for that.