#familyiscomplicated PANDAS

[biomedqueenie-blog]

Cabin Fever

We spent part of Saturday at my parent’s cabin.  We also went and spent the night Sunday and most of Monday (Memorial Day) there.  By the end, Israel was a bit of a wreck. I’m chalking it up (in part) to histamines, because they always make him have urinary incontinence, which he had in spades.  Let’s just say our departure was more abrupt than planned, and he was down to nothing but a shirt.  He’d been going commando ever since waking up, but then after lunch he had another accident, and so then he was only wearing his psychadelic lime-green shirt. Then, because what else is there for hands to do? - he’d occasionally playing with himself. Thank heavens it was only occasionally.  Because back before, in the moldy Provo house, it was pretty incessant.  And to top it off, potty talk was the only topic of conversation he really initiated, too, I swear. At any rate, he was also insistent, inflexible, and full of perseverance about everything; the more miniscule and ridiculous; the more insistent he was that it had to be just exactly so. So Monday morning (prior to the second accident, so at least he still had pants on) he’s upstairs cleaning up his Dominoes.  Which was a bit of a miracle to begin with, but then he insisted I come up, because he wanted to give me the Dominoes, but he couldn’t possibly bring them down to me.  You need to come upstairs, mom.  I will drop them; they’re too heavy.  If you don’t come upstairs right now I will drop them on your head.  One of the OCD tendencies that’s been occuring lately is the fear of dropping things if he has to do any extra work associated with moving or bringing or whatever.  And the bit about threats?  That shows up when he’s flaring, too.  It makes me so sad.  This isn’t who he is. Anyway, I’m out on the back porch, enjoying the sun and visiting with Meg and my mom, and he wants me to come upstairs so he can hand them to me, and if not, you know, he’ll just drop them down from the loft space and let them land on my head.  Pleasant thought indeed. I apologize/explain ti my family that this persistence, this inability to say, “okay, I’ll bring them down to you,” is inflexibility and perseverance with a very specific plan he sets forth. Dad says something like, “No, that’s just being a kid,” And it made me so mad.  And so hurt.  And so misunderstood. There were so many things that made this trip hard.  Things that made it hard for me, but not hard for my parents.  Yes, they did a lot of the cooking.  And I appreciate that.  But I started putting Sam to bed at 7:30 and never got “done” with that til he woke up the next morning. I had no time where I was not Mom.  This is the cruelest, hardest thing for me.  Taking away my quiet Mickelle time is the hardest thing someone can ask me to do.  I slept on the floor in constant fear that he’d wake up and crawl around me and fall through the non-regulation slats of the loft.  It was a miserable night. I spent the next day lying on an air matress (upgrade!) and nursing Sam, trying to get him down for naps in a place with too much light, too many kids, and NO WALLS.  My Dad doesn’t want any electronics in the cabin, so I tried (really, really hard) to avoid using them.  Then I just gave up and hid it from him and felt 12.  That’s okay, sometimes he treats me like it so I guess we just have a really awesome relationship like that, Anyway, I know they’re going to want me to come back up, because, you know, it’s fun for them.  Even though it’s work, it’s fun.  And it’s fun for the kids. And sit there, dreading ticks, dreading nap time, dreading bed time, dreading the next time the kids wander in and tell me they’re bored and expect me to fix it, and I hate it.  And nobody cares.  Then we take home  dirty clothes and it’s all just a pain.  Also: I really, really hate not being able to get away for a few minutes with a cell phone or ipad.  I’m really not glued to it, but it’s how I cope.  It gives me a few minutes, wherever I am, to look at something that interests me.  Something that challenges me.  Something that, with biomed, gives me a little hope and makes me feel a little less alone in the world of PANDAS. I hate how he doesn’t see that.  I mean, I’m 34, he doesn’t have to know me backwards and forwards, but all he sees is a rule he wants because it will make him happy.  And obviously everyone else would be happier with his rules, too, right?  Of course right. I. Don’t. Want. To. Go. Again. I know that’s petty.  But there you have it.  I’ll be mature another day.