I am so totally going to write the post about disability competencies in the medical field that has been requested of me more than once. In fact, I've been writing it in my head all week. But I'm really pissed about some of the stuff going on with D's medical people, so it just boils over in my brain into a big, pissy diatribe that borders on insane hatred of MDs. As soon as I can back it up into a coherent post, I'm going to write it.
So, to at least write something, I'll give you some lazy bullet point updates.
- D. D is doing pretty well. He is on another WoundVac now that is sucking the life out of the original incision site that the infected pump was removed from. He is off all IV antibiotics. He spent over $1000 of his own money to get a circulating air mattress that helps prevent pressure sores that insurance won't cover. It looks like nothing is going to happen until the incision wound heals, which means he will probably not get the medtronic infusion pump put back in for several more months. He is going to a new pain management doctor at the beginning of April, and if I go much further into this update I will spiral off into the above mentioned diatribe.
- With the exception of Thurs. mornings when my dad took the kids to the gym for me for a class, I have now had the kids by myself without help for nearly 8 weeks straight. My dad is back in Kansas now and the class is over, so that is gone. D has only been able to come over one or two times since January and has trouble being left with the kids for more than a few minutes because of his spasms. It has been a long haul.
- When D first went in to the hospital, I had a lot of church people volunteer to come help out with the kids. I'm sure they were well intentioned, but one by one they seemed to drop out of site. It may be my fault for not following through very well, but I just have a real difficult time managing people and hunting them down and badgering them for something they've volunteered to do. I would do one phone call or email reply, and then if things fell through, I was not about to go begging and badgering. So, I've basically been all about the kids lately.
- I'm tired.
- My friend, Niklas, is coming to visit in May. He's actually bought tickets and everything, so that makes it real. I promise I will not just hand him my children as soon as he walks in the door and then go lock myself in my room and sleep for a week. I promise. Really. I won't do that. No, I won't.
- I totally missed a covenant group meeting tonight at my church. The kids and I slept right through it. I missed last month, too because I was attendant caring for D that night. Bad, bad, me. The people are nice and I enjoy going to this thing every month...for the first two hours. The first two hours are visiting while the kids are in the next room with a sitter. The last hour is a potluck. It is the potluck that kills me. First, I have to figure out what to make, based on some "theme" which usually includes finding recipes and buying groceries I might not normally buy. In large enough quantities that would feed everybody, even though mostly people don't eat much at these things. I just don't have the money to waste like that. And something that the kids (mine and others) will eat and something that doesn't have milk and gluten for this or that person. Then I have to spend time on Saturday making it. Then I have to arrange the kids schedules so they are adequately rested and fed and clean for this thing. Because for some reason we do the potluck at the end rather than the beginning when our food would be warm and the kids would be hungry. (At least my kids.) So if I go by myself, I have to find a way to pack and transport the food for the 3/4ths mile walk. Then at the actual potluck, I am running around feeding four people while everyone else just has one person or maybe one person and their kid. Then everyone is done eating by the time I have sat down to eat. Then I can't hear anything anyway. Then I have to help clean up and monitor overtired, running around kids. Then I have to get us all home and to bed and up for church the next day. I know I'm being a big whiny whiner that whines about this, but I love the group...and that last hour almost makes it so not even worth the trouble. I am thinking that I either need to quit or make some kind of deal with them that I will bring snacks every time but I am bowing out early before the potluck and just stay for the first two hours. Cuz, man I friggin' hate that potluck with the heat of a thousand suns. Okay, that may be an exaggeration, but sometimes little things tip the scales of what you are able to electively handle.
- I've made a decision about preschool. I'm going with the homeschool coop that is cheaper, yet farther away. I missed the deadline for the other preschool (purposefully) and I have not yet gotten in to the homeschool one, so I take a risk. But I have been told that I do have a good chance of getting in there. I have visited there twice now. One on my own and once with the kids. Everyone there was EXTREMELY nice and accommodating. Almost too nice. I started looking for signs that I was entering a cult! But I think it is ok. This was my first interaction with real live homeschoolers (vs. the ones that live in my computer). I found this crowd to be secular and lacking any sort of radical zealotry; homeschool or otherwise. They are willing to take both my kids for one open spot. They don't double the volunteer work because I have two kids. At first I thought that it wasn't "meaty" enough and it was too laid back and it wouldn't challenge my kids. There was a lot of just free play and very little structure. But then I took the kids, and it was really right where they needed to be. Three hours was really plenty for them. Naim can sort of manage his overstim problem by just escaping to a quiet corner when he needs to and Aaron doesn't have too many people telling him too much of what to do. He needs a lot of freedom and hates to follow the crowd and procedure. YET, there is a loose procedure for Naim, who likes it. The trip wasn't too bad. It is a 20 minute ride and a mile walk. There is a city park and a library nearby. I really felt, on a gut level, that this was where we belonged. It felt good to be there and it felt like a place I wanted to keep going back to. The kids had a lot of fun and still ask me when they can go back. I'm sorry to say that it will probably be about five more months.
- My goal is to get to bed by midnight every night, and it is now 12:01. So, good night!