originally published at VOTS

I’m tired. Another rough night with Dan. Last night it was around 2 am. when he came to me crying. I don’t know what he was upset about, I couldn’t get that out of him, (kids on the spectrum are not all that chatty) but he assured me that things would never be okay again.

When these things happen, and they do-up to a couple of times a week, I walk him back to his bed and lay down with him and we start to talk. I tell him that he’s okay and that things will be okay, that nothing will hurt him tonight. He’s afraid, so I stay and begin to talk about how soon school will be done, and what a great summer we will have, and I can feel him start to calm.

He asks when it will be sunny, and I tell him that it should be by the end of the week. I ask him if he thinks he could dream about that, but he’s not calm enough yet. We start the slow calming breaths that I taught him, and his eyelids begin to flutter before popping back open. He asks me to hold him. Sometimes he needs to feel all enclosed, no problem, but this could get awkward when you get a bit older, Dan.

He says he wants a rainbow slushie when it gets sunny, and I tell him that it would all mix and be dark, but I could make a sno-ball and do a rainbow on that. This pleases him, he tells me he could dream about that. He is relaxing, I can feel it. I tell him that he’s going to be fine now, dreaming about the sunny days and our pool and how we’ll make rainbow sno-balls and eat them in the sun. He tells me I can go now, he’s okay, and I know he is.

I go back to my room and within five minutes he’sleep. I am not so lucky. So, today I am tired~

originally published at VOTS

I guess the fibro flare was inevitable, what with the uptick in stress and all. The tiredness and muscle pain, well, I can deal with that. I’m only mildly annoyed, really. You want to know what’s killing me? The fog. The losing my train of thought, my next word, the standing there with my mouth hanging open…I hate that!

And it is stupid things too. I’ll be standing in kitchen, wanting more coffee, but being fogged, I will have left my cup by my computer. So I say, “Collin, could you bring me my….” that thing, that thing right there, I’m looking at it, I’m pointing at it, the kid is starting to look at me strangely now….”cup, that cup.” Damn it.

My dad talks to my while I’m typing. Well, to be honest, my dad talks to me, no matter what I’m doing. On the phone, typing, talking, reading, and normally, I don’t like to say anything to him because if I do he gives me that exaggerated ‘sorry” that tells me he’s anything but, and I ought to feel like shit for daring to speak. He just thought I’d like to know that pot roast was on sale. While I’m busy telling him that he buys it I just cook it– I look down to notice I just typed “pot roast”– in an e-mail to Dan’s teacher. Yeah…son of a bitch. Backspace, backspace, backspace…..ugh.

Then last night I pissed myself off so badly…I can scarcely express it. I’ve always been a bit of a channel surfer during commercial breaks. I was watching a true crime thing on Discovery ID and it went to commercial, so I surfed. Do you know I never came back? Nope. Just clean forgot I was watching something. It wasn’t like I found something more fascinating to watch on another channel or something like that, no. Oh, no, no, no! I was still mindlessly switching around when a glance at the clock showed me 59 minutes and I made an audible gasp. Now how the hell did that case turn out? Gah!

Stuff like this…it really bothers me.

originally published at VOTS

As a family we were never the Hallmark Card picture of any holiday, but we celebrated and enjoyed them just the same. Mother’s Day was no exception. We never did anything over the top, just cards and flowers for mom, gifts when we were flush, and a nice family dinner. The non-moms get to clean up and that is pretty much how it went for most of my life.

Now, here is where I’ll tell you a little something about my mom. My mom was smart, funny, the Aunt who was everybody’s favorite, and notoriously hard to buy a gift for. You could try, but if she opened that bugger and wasn’t thrilled with what was inside? Oh! There was no hiding that, she just couldn’t pretend. That is hard on a kid. Happily, as she got older, she started collecting things, Seraphim Angels for one, giving us all an easy out. Just add to her collection and she’d be pleased as punch. That’s over now. There’s no more pleasure or displeasure, just a distracted sense of–Oh, is it Mother’s Day?

It shouldn’t be this hard, yet somehow it is. I can’t even explain it. I loved my Grandmother as much as one could possibly love another human being, and I helped nurse her through her final year on this earth right here in the room where I sit. A series of strokes took her mobility, her speech and finally her life, and that was very hard, but it wasn’t like this. The doctor told us all that we took much better care of her than she would have ever received in long term care, she was never alone, she was always surrounded by family who loved her. It was at this time that my mother got a promise from me–no less for you, Mom, never will you be abandoned to strangers, not on my watch. That’s a promise she’s reminded me of at times over the years, not lately, because she doesn’t remember, but I do.

Dementia has stolen the Mom I knew, but not the Mom I love. Even if she doesn’t know if we’re mother and daughter or sisters that day, she still knows that she loves me and I love her. As I stood at the stove on Mother’s Day I heard her come into the kitchen, and I turned to her, “Do you need something, Mommy?” She came to me and hugged me, her eyes welling up, said my name and “Thank you, thank you so much for…” then the strings of that emotional corset pulled so tight– I couldn’t breath for a moment, my throat threatened to lock and leave me unable to speak. I heard her murmur something about what I do for her and I managed to get out, “No, we do for each other, we always have.” She pulled back and she was smiling, “Yeah, we do, don’t we?” and then she wandered away.

And that hug, it was a gift, a beautiful gift to me. But what I wouldn’t give for just one more stink-eye from Mom over a bad gift.