Originally published at VOTS

My Dad is pissed off. About what, you ask. Well, one never knows what, out of any number of things will set him off throughout the day, but, believe me, you do not want to be in his path when it happens. For instance, last week, during a seemingly innocuous discussion of Whopper Wednesday, Dad mentioned that each time we partake in this fast food festivity it cost him 25 bucks. Now, I don’t why, but for some reason a giggle managed to bubble up and escape from me. Suddenly, I found myself in the room with Joe Pesci, “What? That’s funny to you?”

“No! Nope, not at all. I wasn’t laughing at you, Dad, it was something on the computer! I can always rustle us up something here at home, we don’t even need to do Whopper Wednesday, I thought you liked it.” Oh, holy shit, that was close.

A lot of us Catholic school kids learned long ago many tricks to suppress laughter. My best bet was always to suck in slightly and bite down on the inside of my cheeks. I’ve had occasion to employ this method from time to time over the years, meetings, school plays, funerals, but I never dreamed that I’d be raw as hamburger in there at this stage of the game. It’s not just me either, it’s to the point now where I can shoot my sister a look across the table that instantly conveys: careful, you’re in danger of getting “Pesci’ed.” Yeah, it happens often enough that we’ve short-handed it.

Yes, he rants and he raves. He calls utilities and bends the ear of whatever poor shmo happens to be on the other end of the line for what seems like hours. Why isn’t it like it used to be? Why did your website change? Why is there a charge to pay by phone? Are you the same person I talked to yesterday? Damn it, what happened to customer service? Better them than me.

He runs to Home Depot to pick up epoxy. Now, this trip ought to take about a half hour at most, it’s five minutes away and he knows what he’s going for. Two hours later he is back, and there is fire in his eyes. “That fucking store doesn’t carry the two part epoxy I want! Half the people working there don’t know their ass from third base, they don’t even know how epoxy works!” This will be followed by a lecture on how epoxy works (we know, Dad, from the previous ten times you’ve told us) filled with words like methyl-ethyl-ketone, viscosity and other terms to make eyes glaze over. Yes, he does know what he’s talking about, no, I do not care. But, I will sit and nod and make appropriate noises throughout. He was, in his day, the “go to” guy at his workplace for this and many, many other things. Plus–I do not want him going all Pesci on me.

To the casual observer it might look like Dad is angry about damn near everything these days. He’s not. He’s really angry about one thing: His wife of nearly 60 years slips a little further away every damn day, and no matter what he does, he can’t fix or change it.  

Originally published at VOTS

Yeah, you read that right. I’ve been battling this migraine for a week. It seems like it might be dying down, only to come roaring back at me in all it’s spiky glory. I’ve been sleeping crappy, not eating well, I’m nauseous, not really fit company for anybody, and I don’t mind telling you, it’s beginning to piss me off.

I hate this less when it happens in bad weather. Now is the time when I want to be playing with my kids. I have summer projects planned, like the great gel glue t-shirt project. My Dad just picked up the glue, but it sits on the table, mocking me. No happy squeals of laughter in the backyard for me just now. The only good thing about it is that I never tell the boys any of my plans in advance, it’s always a surprise, that way they are never sitting around disappointed. But, damn it, I am.

I just barely made it through poker on Saturday night. I just got a regular game going I’ll be damned if I’m going to let a headache stop me. The nice thing about playing with family is that they know the situation and we deal with it. So, it was a low key night, and everybody was drinking but me. A lot of times after the game is over we’ll sit around and socialize for a while, but as I was ailing, we called it a night. Now, like I said, the majority of the table was lit up like the fourth of July, who do you think met Blargle the great white porcelain god? Hello!

I’m used to being in pain on some level, but when it wants to stay at a seven out of ten or higher for days on end, it makes me crabby. Before I decided to get out of bed and try to have a life, none of this would matter, it would just be the slightly dimmer week in a dim life. Now that I actually have a life, with kids and a husband and activities and such, it’s really quite irritating, to say the least. Especially in summertime.

I am in bed too much and it feels like summer is flying by. Maybe I’m dwelling on it a little, I always feel a little guilty when pain keeps me down too long. It’s just that summer always seems to go by so fast anyway, I don’t like missing a minute of it, let alone a whole week.

Originally published at VOTS

As some of you know, my younger son is on the autism spectrum. One of his big issues is thunderstorms. When he was a toddler, he mostly ignored them, and as he and his brother got older, they would sometimes come sit by me, or come jump in bed with us during a bad storm, but I think most kids do that. Starting last year, Dan started to get really freaked out by storms. He would go into meltdown mode, start worrying a tornado was coming to get him, and there would be hell. I had to figure out a way to get him through the damn things.

See, Dan loves to read and be read to, and we had books for anxiety and books for me to know if he gets what he’s reading, but I thought I needed something a little bit different, something special. When I was a child my mother had given us a Reader’s Digest collection of stories for young readers, there was a story in there called “The Devil’s Hide” by Parker Fillmore. It is a gruesome, yet delightful story of how a young man named Erkki makes a deal with and gets the best of the Devil. The only problem? The book is out of print.

A couple of days later I am talking to my sister on the phone. I tell her about the storms and ask her, does she remember that story? Does she! She has it. What? Yes, she also loved that story so much that she wanted to read it to her daughter, so a couple of years earlier she had gone in search of the thing and found it, paid too much for a raggedy copy, and was now willing to pass it on to me. I couldn’t believe my luck. I hope Dan goes for this the way I think he will.She delivers the book into my hot little hands. It is old, its binding is naked, and pages want to float away, but all of the story is in there. I hide my faded red treasure to await the next storm.

I don’t have to wait long. A gentle rumbling and Dan is winding up for it and I say, “Hey, how about we save the day.” This distracts him, throws him off balance, as his curiosity overcomes his anxiety, I add, “I have this very ancient book here with a very special story inside about a boy named Erkki…” And both my boys follow me to the sofa and settle in on either side as I begin to read. It is quite the grisly tale. Erkki watches as his two elder brothers, each in their turn, go out to make their way in the world, and come home missing a patch of their hide, lost to the Devil over a bargain on who will lose their temper first. Naturally, Erkki, being the hero of the story, sets out to succeed where his brothers have failed and does so in a somewhat grim yet hilarious manner, vexing the Devil mightily the entire time.

Now the storm was over by the time I was halfway through the story, but Dan had no idea of it. He was too busy giggling at me sputtering and choking back the Devil’s rage as I tried not to lose his bargain for him too early in the tale as Erkki wreaked havoc in his life. By the time the story was done, the storm was long gone and Dan was completely at ease. I said:   “Well, I guess that storm didn’t stand a chance against us, huh? We didn’t need to pay any attention to that show-off, we had better things to do.”  He smiles at me and agrees, “”Yeah, we really did it, we saved the day!”

Sometimes storms last longer than the story and we may have to grab some Shel Silverstein so we can continue reading, and last fall when Sandy hit and we lost power for a week, that was rough. He had a bit more anxiety there for a while after that, I can’t say I blame him, didn’t that suck for all of us? Yeah, it did. But, overall, he’s doing great. Now it doesn’t even have to be “The Devil’s Hide,” it doesn’t even have to always be reading. Have you ever seen a nine year old save the day by singing along with a YouTube of These Eyes by The Guess Who? It’s awesome.

Originally published at VOTS

If I were to be asked to write a paragraph or two about my life, my current situation, I don’t know that I could do that. Yes, I could tell you in detail about this or that, but no, I don’t ever even think about all of it all at once, let alone lay it all out in black and white:  It’s called compartmentalization, and I’m somewhat of a gifted practitioner. I’m aware that this is a defense mechanism, and if taken to extremes, people can become detached to their own emotions, trust me.  That’s not my deal. In some situations, you need a defense, a way to get through, or you will not survive.

I have to get through, I’ve got people counting on me. I can’t sit and list every circumstance that affects me, because I’m not willing to voluntarily become overwhelmed. I’m not the type to be in up to my neck and look around for a deeper area to see how long I can tread water. Why would I do that? I gave in to my pain for years, and then I fought really hard to get my ass up out of that bed and make some kind of life for myself.  That was 12 years ago, and today I have a life. I have a husband and two gorgeous boys that I never dreamed I’d have, and that’s worth everything.

But I would be lying if I told you it’s been easy, it has not. And it seems that over the past several years, life keeps throwing us one curve ball after another. I’ve written about parts of it. We lost our place to live, and what was supposed to be a short stay with my parents while we got ourselves another place turned out to last, oh…forever. Our youngest was diagnosed on the ASD and the services here are great, and there’s a backyard, and we would have the chance to save up to maybe get a house. We were right back on track, right? Not so much.

It soon became clear that the forgetfulness we had noticed from my Mom was growing worse. Dad always accompanied her to the doctor, but when I asked him what the doctor made of this worsening memory thing, he admitted that he didn’t bring it up, too afraid Mom would be pissed. I said: “Um, you could call and go see him alone, you know?  You don’t have to tell him in front of her but you do have to tell him.” Still, he couldn’t bring himself to do it. I don’t know if it was that he was afraid of having what we suspected confirmed, feeling like he’d be betraying Mom.  It doesn’t matter. I consulted with my doctor (in the same practice) as to what to do. I asked if I could write her doc a note, was that allowed.  So, that’s how I wound up delivering a note with my concerns to my Mom’s doctor, and telling my dad afterwards. He was okay with it, maybe even relieved. I told him, “Hey. if it’s what we think, the sooner we can get her on medication, the better.” They said she had non-specific dementia, and it was then I knew I wasn’t going anywhere — I wouldn’t if I could.

That was over five years ago, and the hits keep right on coming. So, yes, I compartmentalize to a fare-thee-well. I’m not in denial and I handle what I need to handle. This doesn’t make me any kind of a saint, a martyr, or anything other than somebody who has learned to survive. Some days I need to take it an hour at a time, but I don’t allow myself to become miserable, my kids don’t deserve that, and neither does anybody else.

I do worry about what happens when I run out of compartments.~

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’s asleep. 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.