Twinkle Little Star

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.

Sergei and Summer

Not that Sergei has anything to do with summer. I just wanted to record a conversation the kids and I had about Sergei the other day. And then also line up what's on tap for summer so I can get things straight in my head. My dizzy, dizzy head.

Naim often gets out the "BIG BOOK" which is a photo album with pictures from my pregnancy to about their first year, and he wants me to "read" it to them. So, I "read" it sort of like a story. Here it is just mama and daddy and the cats. We wanted to have a baby, but we needed help. So Sergei, your genetic father, helped us have a baby. And then mama's tummy got bigger and bigger with the baby growing inside. And then we found out their were TWO! babies! Who do you think those two babies were? "Aaron and Nyman!" they say, and it goes on from there.

I always add Sergei in to the story briefly, just to get it into their vernacular, knowing that someday when they were ready, they would ask more about it. That day was yesterday. After we went along showing pictures of mama and daddy and babies for several minutes, Aaron asked, "Where is Sara Gay?"

"What?" I leaned closer to hear.

"Where did Sara Gay go?"

Oh! Sergei! So we talked about how we don't have any pictures of Sergei because we never met him. He lives far away. Then I showed them the picture I have of him when he was probably about 2 1/2 years old (but that now he is a grown-up man). They both thought that he looked like Naim (he does), and a bit like Aaron, too. So then we talked a bit about how some things about them came from Sergei, like Naim's blond hair and blue eyes. And maybe Aaron's cheeks. And we touched very lightly on how to make a baby it takes a sperm and an egg, and that we didn't have any sperm of our own so Sergei gave us some of his. So, it was all "why, why why?" until they were satisfied and lost interest. I think it went well for a first acknowledgment from them of Sergei's existence. I'm sure there will be much more to come.

***************
Okay, so I need to get a handle on the next few months, cuz lately I've been kind of brain dead and I'm losing track.

First of all, D is having surgery to replace the medtronic pump (yea!) on June 17th. That is my main focus right now. There is a lot of stuff that needs to be done from now until then. We are going to try to de-MRSA the place, including ourselves again. So we are all going to go back on the Bactriban antibiotic. We are also all going to take hibiclens showers for five days prior to the surgery. (From what I can tell that is just about using the kind of soap that surgeons use to scrub-in with.) And then we are doing lots and lots of cleaning. We are throwing out old pillows, bleaching anything that can be fit in the washing machine, and steam cleaning everything else. We are literally going to take a steamer and with some kind of anti-MRSA solution, steam the walls, the blinds, the everything. But we have a surgery date. Best case scenario is that surgery date plus one week or so and this will be over. (Now don't jinx me for saying that, Oh Higher Spirit! I mean, c'mon!)

Next up is a Family Retreat thing I'm going to that is sponsored by the UUs. It is over 4th of July Weekend and  it will be me and the kids. The good news is that we get the ADA suite in the Lodge of this sort of parky-wilderness retreat, so no heavy duty camping for me. I don't have camping gear anyway. D is not coming with us, but may be able to come up for a day. The place is only about 1/2 hour away from us. My hope is that this won't be a lot of stress and work and instead will be a bit of a break for me. I've come to figure out that I am just so So SO burnt out on care giving. Nik being here and me practically crying with relief like a crazy woman when he would make the kids PB&J kind of clued me in that I was in a bad way. That and my complete and utter slump of any sort of motivation to do one thing for anyone else after he left, yet still having to force myself to care give in a daze of ambivalence was another clue. I am SO SICK of sickness. It makes me sick just thinking about it. And to realize that I really have done nothing but caregiving for the last 6 years. D, kids with cancer, my mother, D, my kids, D and did I mention D? For the past 3 years since the kids, it has been really relentless. D has had major health problems for basically the equivalent of two years of the last three. It's not his fault and I have to keep going, but I am going to try to figure out how to take some breaks. Like a weekend every three months or something. This retreat is a little bit of a test, to see if just getting into a different scenario with the kids in tow will do it, or if I need to figure out how to get rid of the kids. What I really want is to have a weekend, or maybe just a day every three months or so, when I can sleep as long as I want and not even get out of bed if I don't want to and read all day or watch movies or talk on the phone or something like that. I think if I could break up the caregiving into little 3 month chunks like that, I could handle it a lot better.

Another thing Nik made me think about is how much I miss just hanging out with adult friends. I do this regularly, but all of our respective kids are always with us. Which is also okay and fun sometimes, but I'm going to try to get a babysitter more regularly and hang out with adult humans. This teenager came to my door the other day for some kind of fundraiser, and she lives in my neighborhood. So I was talking to her about babysitting, which would be cool because the problem I've been having is that I can't pick these girls up and drive them home. This girl can walk home, she is literally around the block. My friend J is in and out of the country, but I think he is going to be here for the month of June, so maybe I can try her and go do something with him.

Okay, so then in July is the kids' half birthday party. Which by popular demand is going to be on July 12th it looks like. I think I am going to do it picnic style in a park down the street. So that should be fun and low key. If you have ideas for outdoor games/activities for the two to five year old crowd, let me know.

I have put off going to Kansas until September. It kind of got really complicated and messed up so it was easier to just go home with my dad when he leaves for the summer. My goal between now and then is to get that kid of mine POTTY TRAINED! Naim is all good. As long as I remember to remind him, he never has an accident. Aaron...oh....I just don't want to talk about it. That kid DOES NOT CARE about potty training. Take his diaper away and let him run around naked and he is perfectly content to pee wherever he happens to be sitting and then continue to sit in it.  He doesn't care if his diaper is wet or dirty. He just doesn't care. Sigh.

Is that all? I think I'm missing something for August, but I can't think of it now. Anyway, off to do hazmat duty at D's house.

Playing Hookey House

Oh.

My.
 
God.

You all with the parenting partners--the live-in kind, I mean--have been holding out. Having another live person in-house to share in the childcare gig is, um, REALLY FUCKING GREAT. I have not updated for a while not because anything was wrong, but because I was having such an easy, breezy time of it with my friend Nik here for the last week.

Disclaimers:

1. None of this is meant to be any kind of poor reflection on D's role as my partner. It is just the reality of the situation where the kids need a lot of physical care at this age and D has a lot of health problems right now. I think that when the kids no longer need so much physically from me in the next few years, I will not have so much of this "single mom" feeling.
2. Despite the topic of this post, my visit with Nik consisted of other things besides my slave-driving enjoying having his help with the kids. We actually did--gasp!--grown-up things as well! And had grown-up conversations! But for this post, I'm going to talk about how I turned over all manner of responsibility to him for a week and enjoyed being a lazy couch potato mom.
3. I'm going to cover up my ears and "la la la la la" when you comment about how I am forgetting that in real life, partners have to work and wouldn't really wait on me hand and foot and have spats about the laundry and whose turn it is to give the kids their baths and who forgot to bring home the milk from the store and who spends too much time on their hobby or whatever. You hear me, commenters? La la la la la la la.

But here is the thing. In my decision to become a mom, I knew I could do it and be good at it. What I severely underestimated, though, was how much exhaustion and the constant day-to-day 24 hour-ness of it would compromise my parenting skills. And how much work and discipline it would take to control and manage that so that I wouldn't go insane. It isn't so much about having a husband or a father, it is about having a second pair of hands, eyes, ears, feet, voice, physical presence in the vicinity. How nice it is to decompress with someone in the quiet of the evening and just talk about the day without the kids. (D and I do this often, but can't every night. Especially lately when he has needed additional night attendant care.)

I mean, get this: On, I think it was last Monday morning, I got to sleep AS LONG AS I WANTED TO, knowing full-well that the kids would be up, dressed, had breakfast and be entertained and safe while I slept. I have not had one. single. day. in the past three and a half years where I didn't have to get the kids up. This was literally the first time someone took the kids in the morning for me since they were born. And I realized how much easier and less stressful it is when you don't have to do EVERY bathroom trip, change EVERY diaper, mediate EVERY sibling dispute, and watch EVERY move they make all day, every day. It isn't as if I haven't had babysitters or occasionally D or my father look after them while I am in the vicinity, but for 8 days straight? By Friday or Saturday, I felt about 30 pounds lighter just from the stress that had been released from my brain. And the freedom to just run up to the store unencumbered by children. How many more little errands you can do without them. To just have them able to seek attention from someone else besides me all the time. I was such a lazy, slovenly mom all week. It was great.

What concerns me about this little experiment is this: Say I had help all the time. I wouldn't be as lazy of course, and my 'help' wouldn't be able to be as accommodating because of course they would be living here and having their own life, too. But I could see the potential systems that could be set up. The divvying of the work, the things that you could rely on. The backup you would have. The improvement potential. The better mom I could be. How much am I cheating my kids by compromising my own skills, energy and sanity levels with this exhaustion? I made this decision, I don't regret it. I will work it out. But what is my responsibility here? How hard should I try to get support so that I can be a better parent to my kids?

I'm not going to go out and get married or anything. Nik and I are not in a position to get married and besides, 3/4ths of other people's husbands sound like they don't pull their own weight anyway and then it becomes a management issue where you are parenting the husband as well. D will be able to step in to the role more and more as the years go on. So this is mostly a semi-permanent problem. Or a semi-temporary problem, as it were.

Or is it a problem? Tons of single women do this, many while working more hours than I do. Maybe I'm not working hard enough. Maybe I just need to suck it up and demand more from myself.  No, the baths won't get skipped when I'm too tired. The toys will get put away each night. The homeschool projects will get done each day. I will not yell at my kids when exhausted. Ever.

Sigh.

Just the mere thought of that level of expectation for myself makes me want to run into a wall repeatedly. No, there must be a better way to be a single mom of two preschoolers. Hire more help? Ask for more help from volunteers? Manage my stress better? My schedule better? Work less hours and live more cheaply? Work more hours and end up with a salary that goes to daycare, yet gives me a kid break?

It is the age-old question. What level of good parenting is good enough? I think--I KNOW--I do a pretty good job. But when smacked in the face with how much better I could do if the work were shared, it makes me wonder if pretty good is good enough. But there are no live-in partners; no stay-overs at daddy's house in the immediate future at least. So, I guess I just continue to put one foot in front of the other, try to control my stress level and energy level to some decent degree, and just be "good enough."

But I had a very nice week.