Twinkle Little Star

It has happened.

The new blog is up, running and has taken off. You are free to look through the archives here for as long as I choose to afford to keep the site up (to the end of my subscription year probably.)

There were a few people who requested the link that I got bounceback emails for. If you didn't get one (regular reader loulin comes to mind), please make sure you have sent me a working email address.

If you are new to this site and want to keep reading, sure! Come on over! But the rules still apply. 1) You can't know me in real life; and 2) you need to send me a valid email address. In turn I will email you the new URL and I will not use your email or personal information for any other reason without your permission. In essence, it will be deleted from my mailbox.

Happy Bloggidy Goodness!

Oh, I give up!

About a year and a half ago, D and I had a big argument that resulted in a "contract." One of the stipulations on the contract was that I would move the blog and go anonymous. I never got around to doing it. Also, since then, I've been fiddling around with wordpress quite a bit, and I have to say I really can't stand typepad now. So, I think it is time for the move. Always tricky. So, we're moving. Soon. And if you want, I'll take you with me. I will pretty much take anyone with me that I don't know in real life. If you do know me in real life, don't be offended. It isn't you, its me. Or it is D and his family. It is just that I have to draw the line somewhere and that seems like the easiest criteria to go by. If you are a close friend, don't worry, I'll get to you eventually. You probably know everything I write about anyway.

So, if you want to know where I've moved, you need to email me or drop a comment that tells me who you are, how you got here, how you know me, that kind of thing. I also need a valid email address. If you have a blog or other website address, even better. I will be whois-ing people if I am still unclear about who you are. But after that, I will discharge all email addresses, IP addresses, any other private information from my computer and my head if so requested. I am not trying to be nosey as to who you are, I just want to make sure who you are not. But I hope some of you do decide to move with me. I like you! I really, really like you! And there will be drama and twin cuteness and humor and bitchiness, too!

I will be leaving this site up for a while, so if you happen upon it and read it and want to find out what happened next, go ahead and email me, too.

But, to close this puppy up...I'll leave you with a brief update.

D is doing really well. No infection. The pump all looks good. He is having to build his stamina still, but it is nice to have the old D who can form complete thoughts and sentences back after his 7 month absence into baclofen induced stupors.

Kids are well, frustrating but well. I have not done a good job this summer with homeschooling stuff or just getting them out and about as much as I should have. I've just been maintaining and it is not good enough. They get ansy and act out. But I am getting geared up for fall. I will be trying to get them into this preschool program that doesn't register until August 19th, so wish me luck with that. I have no idea if they will get in or not. If not, I will be looking at other classes and activities for them.

Last night, I was looking at the reunion site for my 20 year (God!) high school reunion. The reunion took place last weekend in Nebraska and I did not attend. But I noticed this girl I knew was listed in the "In loving memory section" And then proceded to stay up all night searching to see what happened to her. I'm recovering from the trauma that I found. She was murdered by her husband and thrown in a river. They lived on the same street that I spent 11 years growing up on. Horrible crazy sad horrible. I ended up finding out all this by happening upon a dog lovers message board of all places, where I found another girl I knew from highschool who was good friends with her and I was reading it in "real time" as she found out about it. She was missing for two weeks and their was a search and then through finding her and the arrest and trial and everything. Even though it happened two years ago, it was chilling to read like that. I felt so bad for the person on the message board. Armed with her married name, I then went back to find 1800 articles about it that I missed. It was even a story on Greta Van Susteren's show. I must have been knee deep in baby brain or something because I didn't have a clue. I don't know why I'm telling you this, it isn't really an update about me, it was just very, very sad. When I was in middle school, I took industrial arts instead of home ec. Back then, only boys took shop. This girl was the only other girl in the class with me and we sat next to each other all two years. She was way into horses and animals and I was jealous because she had her own horse and went riding and did competitions and stuff. I hate this ending for her and I also hate that this story is so damned typical. She was basically a battered wife whose husband one night battered her to death. The friend on the dog lovers message board even ended up taking her dog, who was found roaming in the streets. She said something interesting. That sometimes battered women have trouble leaving because they can't find a shelter that will take their animal and they know if they leave it behind it will be abused or neglected. So, my friend on the dog lover's site that does animal rescue  did a really cool thing. She was trying to put together a program that linked the women's shelters with animal rescue shelters. So there would be a plan available for the pets, too. Pretty cool, I thought. Anyway, I guess I just wanted to write that story out. Such a terrible and unfair ending.

But, in better news, I am leaving to go on my trip in one week. Everything seems to be in place except for the little stuff like packing and laundry and stuff. I'm making the kids a chart so every morning they can X out a day that I'm gone so they get an idea that I'm coming back and when I'll be home. And then I will call them daily, of course. I'm leaving them my reluctant team of three that put together don't even equal one of me. (Arrogant, much?) I have a good babysitter. She is great, and I don't include her in my band of idiots (see why I need a private website? I can't help myself.) She is just young. She is 17 and can't drive. she is very dependable and good with them, though. Then my dad and D, who both have their positive points. My dad has the energy and the car and the physical ability. D has the sense and is the closest to the kids besides me. Besides his physical disadvantage and energy disadvantage, I mostly worry about the fact that he has trouble stepping up and taking charge. So, I know between the three of them it will all work out and be fine...but I could think of a few moms, some of which are probably reading this right now, who I think could replace me in a heartbeat and I would not have a hesitation in the world. You know, people who will just get things done and know what to do and do it? And also do it without reluctance and with gentleness and kindness? You know what I mean? I'm not saying that only mom's can do this because I can think of one or two men who can do this, too. I'm just saying that for this trip, I don't have that. But I have three people (and a few friends that would probably step in if the shit hit the fan) so it will all be okay and I'm getting the fuck outta dodge.

I can't think of anything earth-shattering besides all this. There will be a few surprises on the new blog. So let me know in comments if you would like me to email you the URL. I am going to try to work on it tonight and get people emailed in the next week.

Otherwise...thank you and goodbye Twinkle Little Star! You were a good friend the past three years, and led me to some awesome, awesome people!

Updates and the Trouble with Blogging.

Anyone still out there? You are? And you? And you are, too? My god. For those of you still checking this site, I love you for hanging with me.

First the updates.

Dwight finally had the surgery to replace his pump last week. And, yes! He has a pump. So far so good, but we are not out of the woods yet. He is still on IV antibiotics for another week. He is way overmedicated and having problems adjusting to that. And he has two new wounds now (a place on his back where they place the catheter into his spine and the incision on the front where they put the pump in at.) So those need to heal. I'd say we have at least two weeks to a month before I can declare a total success and things will be back to normal, but it is all looking good right now.

I tried to go to the UU family camp over the fourth of July weekend. We lasted 1 day and I couldn't do it anymore. I came home early. It wasn't that we had a bad time, it was a good time and everyone was great there. It was just too much for me to do right then. I had been sick for a couple of days leading up, I was back on the bactroban which makes me a little sickish as well, and I had just a whole lot of work to do around here. On the drive there, I could not keep my eyes open. The first night I went to bed at about 7:30 and slept till 7:30 the next morning. It was a lot of fun with the kids and it was a very pretty setting, it was just a LOT of supervision of kids in a very wide area that I couldn't see or hear well in, and kid juggling and getting certain places on time to eat and sand in shoes and communicating with others and I just knew that if I kept that up for the whole weekend I was just going to die by the time I had to go back home and do more work. I did feel really guilty about that. It was definitely disability related. It was just not a level of "awareness" visually and hearing wise, that I could maintain for that long of a period of time. I think if I did it again (and I hope I do try again) I will have planned for some kind of help. Either take a teenager with me or organize a trade with the other mothers or something. People were very helpful, especially around meals with helping me carry plates and things. But it was almost sad being there all by myself with the kids. I could see how other families just naturally had a give and take and tag teamed and already had systems of working together in organized ways that I just couldn't set up on the fly. I felt bad also that I had left D's father to take care of everything right before  D's surgery. So, I just went home after the second day. But! While we were there we had a really nice time and I enjoyed being with the other moms and kids and it was a little adventure for us. We slept in bunk beds and the kids played on the "beach" (sand volleyball court) and threw rocks in the stream and played music and blew bubbles and just were outside with their friends. It was good, and I will try again next year with some better planning ahead for help for myself. And the kids will be older then, too. I'm learning how to be a disabled parent as I go, I guess. That's all I can do.

I felt guilty that the kids never got to go swimming there, so we have gone swimming in D's apartment pool and they are really doing well with that. I used to not be able to take both of them at once but now I can. They each wear a life vest and I have an inflatable "fish" that I can put one in while I'm with the other. They understand that they need to take turns and understand their limits in the water. Aaron has always been a 'swimmer' but Naim has always clung to me. But now he is also letting me just hold his hands while he kicks  his feet and stuff and will sit in the water on the steps by himself. So, that has been fun. Its probably about time for swimming lessons. Don't know if I will get to it this summer, but next summer for sure.

My August project that I alluded to earlier is a go. I'm going on a trip! For six days! By my F^(%*ing self! My dad has shocked me by agreeing to take the kids at night. He will just have to feed them dinner and put them to bed, and D may be able to help with that. I have a girl that has babysat for us a lot this summer that will have them during the day. I'm visiting a "friend" in an "undisclosed" location. How's that for cryptic? (I'd tell ya, but I've been asked not to, sorry) It is a trip I've wanted to take for a long time. But I will say that the location requires air travel to get to, and so there will be no coming home early. There is some work to be done, planning for the kids and activities for them and stuff before I go, but I'm looking forward to it. I just figured out that I have taken care of the kids for approximately 1312 days by myself without a break. (An all day break, I mean. I've had few hour breaks of course.) I think I deserve six days, no? My main worry is that since the kids have been with me for 1312 days, that they will be okay without me. I know we will miss each other a lot. Does anyone have any tips on how to prepare them or keep them happy while I'm gone? Let me know.

Okay, now for the trouble with blogging.

I have not been blogging for a couple of reasons. One is that I've been very busy and very tired. The other is that I've had a bit of writer's block. The writer's block stems from, I think, my inability to write about some really important things that are going on in my life right now. If I can't write about them, it is hard to write around them.

Everything is okay. But to be quite apologetically vague, I've just been really rethinking everything on a fundamental level. And there will be changes ahead. This has been coming for a long time, but I'm just rethinking where I am in my current situation in life. What kind of living arrangement, family life do I want for myself and the kids. What kind of career I want. What kind of people I want around my kids and what kind of messages they get. Also a lot about what I deserve/want for my own personal self. My current situation is not awful by any  means. In many ways I am very lucky. But it is not working for me. If you have been reading a while or look back in the archives, you can see it and all the reasons why. I'm just asking myself what I really want for myself and the kids and I do have a direction I want to go. Meaning, I'm coming up with the answers. However, I'm not sure exactly yet how those answers will look when implemented. Any changes I make need to be made while considering a lot of people. Obviously the kids, but also D and his family and my dad. The challenges are not in finding what I want, I know almost pretty much exactly what I want. But how to get there on a practical, logistical level. And because there are so many other people involved that I care about, I need to not go off the deep end and make any "sudden moves" but just go very slowly and deliberately and carefully so as to help everyone adjust without major fall out. So, this change is going to take time. Lots of time. But, I see a brighter future for myself and the kids. And that optimism is something I haven't had for a long time and is very exciting.

Aren't bloggers annoying when they do this? I know! I hate it, too. Actually, I really, really want to tell you guys what is going on! And share my thought processes with you and have you all give me your take on things and all your advice on how to proceed. But, there are IRL people who read this blog and I don't want to say something when I am just throwing out ideas and brainstorming that would be confusing to them or would be unintentionally hurtful to them. It is very important to me that whatever changes I make are understood and okay for everyone in my real life, too. And blogging about hypothetical chickens before they hypothetically hatch is just so irritatingly challenging and somewhat dangerous. However, I feel like if I just kind of fessed up to this in some way here on the blog, I might be able to get over my writer's block and go on writing about other stuff and maybe this is some capacity as well somehow. Oh, hell. I'm just going to have to figure out a way to PM all of you already!

So, I'm going to try to come back and be writing some more and better blog posts. There certainly are lots of things to talk about that don't involve me and my little complicated life, right? Hope you can bear with me a bit longer, I appreciate having you folks around.

I know, I'm a Terrible, Horrible, No-Good, Very Bad Blogger

It's just that I've been.....

Cleaning.

Don't you wish it was something more exciting? Me, too. But what can you blog about when your day is filled with antibacterial soap and chorhexidine baths? Yeah, not much.

So, we cleaned and we shoved Bactroban up our noses and we decontaminated ourselves and D got up early (3:30 am) on Tuesday to go to the hospital and have surgery. You know, that surgery that was supposed to be the end of the whole Infusion Pump Debacle of '08? And he went to the hospital and checked into pre-op and they got an IV started and the OR was booked for 4 hours and three surgeons were scheduled (and a fourth infectious disease dude to consult on hand) and....

He was home by noon. No pump. No surgery, No finish line. He has a bladder infection. Two more weeks of IV antibiotics. And then they schedule the surgery again and we do all of the above cleaning, decontaminating and antibiotic-ing again.

What is most frustrating, of course, is that this is another thing that is more medical administrative related than health related. It has been about a month since D was off the last round of antibiotics. There was a three or four week window of opportunity where they could have gone in there when he was infection free, but they couldn't get their asses together to schedule it then. D told them back then that another infection would come, and if they didn't do things quick, they would miss the window. They missed the window.

Not only that, the UA that showed D's UTI was done the prior Wednesday. D didn't find out till Monday that he had a bladder infection. He had an appointment with the pain management surgery that day, and told him about it. He also told the neurosurgeon and faxed the pathology report to infectious disease. No one did anything. Then on Tuesday, they made us all get ready and get up early and all that and drag him there and then they finally got it together and were like, "oh, I guess you have a bladder infection." Surgery canceled.

Then one of the doctors said something that D doesn't care about but pisses me the fuck off. He said that they were really embarrassed and had mud on their faces about it because they had scheduled the OR and the OR staff and had messed up everyone's schedule at the hospital.

Yeah. Well, Waaah, fucking, waaaah. I'm sorry you'll be a little embarrassed at your next staff meeting and maybe get tsk, tsked by your OR administrator or whoever. But D has to go for at LEAST TWO MORE WEEKS with a PICC line (a new one because they took the old one out last time), spasms, pain, infection, antibiotics, home health scheduling fiascos, an inability to drive, and the whole taking so many extra drugs orally that he is spaced out half the time. And I have to go for two more weeks decontaminating everyone and having my skin dry out and fall off from chlorhexidine and having my nose run from batraban and, well, we are just a LEEEEETLE inconvenienced by this.

Not to mention that I'm planning (still) to go to that family retreat with the kids over the fourth of July and this surgery will put us right about there. Not to mention that no one wants to have surgery or be in the hospital the first weeks of July because that is when all the new people and interns start. Not to mention that they said the pump would have to out for two months and now we've gone over six. But, that's okay. I'm sure sorry that you had to cancel your OR today. Hell, maybe now everyone can take an nice extra long lunch hour.

</rant>

Not much else is happening, here. I do owe some of you some emails and I do have some posts written in my head. So I'll try to get back into the swing of things. I have another little "project" that I'm working on for August, but best estimates are that it has about a 30% success rate. So if that pans out, I'll let you know. I should know in the next couple of weeks.

The only other update I have is on the ever-so-exciting Potty training front. I think I previously reported that Naim is all the way daytime potty trained. And with few exceptions that remains successful. And Aaron? Well I will say we have made definite progress. He is at the stage where if I leave him naked, he goes in the potty chair pretty much 100% of the time. Put any clothes on him and it all goes to crap. But, Naim was here once, too and we got through it. I figure if they do the naked pottying long enough, those muscle memory habits will kick in eventually and they will think about it when they are clothed. Right? Right? He IS making progress.

And the only other thing I have to say about that is that I've had so many discussions with those boys about penises that I could really go with never seeing another penis for as long as I live. (At least the three-year-old variety. Ah-hem.) Gems from today:

"Mama? Do you have a scrotum?"

"Mama, when I get bigger will my penis go away like yours did?"
"No, your penis will just get bigger, too."
"NOOOOO! I don't WANT a bigger penis! I want a LITTLE penis!"

When sitting in stroller riding down the street, whips out penis for no discernable reason.
"Naim, you need to put your penis away. That's private and we don't do that outside."
"Okay, I'll wait till we go in the store."

....PLEEEEEAAAAASE make it stop! When does it stop? At four? At four does it stop? Tell me they will be all potty trained and not penis obsessed by four. Please?!?

RIP: Harriet McBryde Johnson

Oh, so sad. Harriet McBryde Johnson, one of the great leaders and fascinating writers in the disability community, has died at the age of 50.

Kay Olson over at the Gimp Parade has a nice tribute and a wonderful list of links to her work.

This from the NYT:Mag is one of my favorites. It is called the Disability Gulag.