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.

Eeeexxxxhhhhaaaaaaaaaaaaaaaaaaaaaaaaaaallle

My dad left for Kansas on the 8th, and he took his little dog, too.

Despite the fact that now I have to clean my own kitchen--which really sucks--and run my own errands--which only slightly sucks because he didn't really do a whole lot of that--I am always amazed at how much better things go when he is not here. It takes about a week for things to click again, and then it is fairly smooth sailing.

It isn't so much that he DOES anything so terribly wrong, he does a lot of little things that just don't jive with cooperating as a family. We are so disconnected that once we both rented the exact same Netflix movie within days of each other and both watched them separately. That kind of amused me. And I could do the separate lives thing, like I've done with roommates in the past, where you just sort of coexist. But at least for the most part roommates try to be considerate and know that they are coming into the arrangement from equal positions. My father thinks his needs trump everyone else's. As I've said before, I can take it--I just ignore it--but it becomes really hard on D and the kids.

I could bullet point a bunch of things that are little that he does. No one thing is that big of deal, but together they make my life much, much more complicated that necessary. Like:

• He leaves very dangerous things around the house, garage and yard. He once left a sharp pair of hedge clippers in the babies' stroller. I found them again out in our patio on a chair. He left electric hedge clippers (the kind that look like a chainsaw) on a low shelf in the garage. He leaves knives and the cheese shredder and things down low. He leaves his heart medication where the kids can get it. I am constantly having to on the spot baby proof and I get nervous leaving the kids in another room unless I've inspected it.
• He leaves the garage in a complete mess. electrical cords, tools, whatever, just thrown any which way. I've tried to keep some things together like the Christmas stuff or my gardening tools. Christmas stuff gets dissipated everywhere. Gardening tools, gone.
• Along those lines, people say to me that it must make me feel better to have my dad in the house so I'm not alone with small children. Well, it might...except he often leaves the doors unlocked all night long. I have to always double check it before I go to bed.
• He crabs at me at least monthly that I need to pick up the dog poop and make the dog poop across the street in regards to a future, potential guide dog that I don't even own yet. But! The kids and I were out planting some annuals the other day (with kitchen spoons since my gardening stuff is gone) and there was Abbey poop EVERY THREE TO FIVE FEET. It was EVERYWHERE. The kids kept saying "mama! dog poopies!" and spooning them up for me to see. Lovely.
• Every time he leaves I go around and match the lids to the pots and the storage containers with their lids and have all the baking stuff together and the silverware together, etc. And we go along like that, happily. Naim (and Aaron on occasion) help me empty out the dishwasher and put most of the stuff away that goes on the bottom shelves and drawers. They manage to put it all in the right place, but my dad messes up everything. And not always the same way, either. So one day I can find the measuring cups over in this drawer and the next day I can find them in another, neither of which are where I always put them. I spend A LOT of time simply finding things. And I'm blind, so I have very little patience for that shit.
• He complains if I give the kids a small cup of his orange juice or if we eat anything he has bought at the grocery store. However, he eats my peanut butter, my crackers, any and all condiments, any food that I make for dinner if he is around, potato chips, any kind of snacky food, etc. Now, I don't really care because I think feuding over food is asinine, but since he can and does go to the store ANY TIME HE WANTS, and I have to plan ahead and order online, it gets really irritating that I can't use his things when he has eating all of mine.
• Then he says just purely asshole-ish things like, "maybe you could get a little refrigerator to keep in the garage for some of your stuff so I can fit my food in the fridge better." Um, excuuuuse me? First of all, I am the one who is feeding at least three, sometimes four and sometimes five people three meals a day. Second, if you would share food like a normal human being, then we wouldn't have to have doubles of everything and we would have more space in the fridge.
• Oh, and he gets mad at me for cooking. For cooking for my children and I and D. He likes the nights when I make sandwiches or just feed the kids canned ravioli. If I cook anything at all, he flips out. And first of all, I am no gourmet cook, so it isn't like I'm doing complicated recipes with 500 ingredients and 50 pots and pans. One night it was because I used a frying pan and a small sauce pan. Another because I used a 9X13 baking dish. I keep telling him that I cannot feed his grandkids chefboyardee every night and still fulfill his wish that they become big, strapping tall men. (Nor can I afford it when someone is eating my food without contributing. My grocery bill goes up around $100/mo. when he is here.)  Secondly, when we were growing up, My mom (sometimes my dad) usually cooked and my sister and I alternately cleaned the kitchen each night. Methinks he has selective memory of all the crap my sister and I cleaned up after their cooking. They (gasp!) actually used pots and pans too!
• He bitches about the potty training status of my boys (which I haven't had the inclination to blog about...because uuuuggggh, it isn't even something I'm comfortable working that much on when my dad is in the house.) yet he brings the little dog out here who he has had for ten years. And that dog is not anywhere close to being housebroken. Daily, DAILY accidents. And if I find them, or if the kids have found them by walking in dog shit, he doesn't even offer to come clean it up. He will clean them if he finds it first, but it all involves a string of irrational yelling and cussing and threatening to kill the dog and wishing upon her a speedy death. And my kids actually hear this stuff. And sometimes repeat it. And let me just say, the f word coming out of your three year old's mouth is not near as hard to explain to strangers as is your three year old saying "Abbey! I wish you would die," to the little girl in tumbling class who happens to also be named Abbey.
• He does that archaic thing that men do sometimes where he basically says to the boys "ah, you aren't hurt/there's nothing wrong with you/boys don't cry." Or he says things like "they need to learn to be competitive! You need to get them into sports or something where they can compete!" Yeah, dad. Competition is all around us. I'm more worried that they learn to cooperate and share and be generous, compassionate individuals thankyouverymuch. Not only is that unhealthy, but it also gives boys a bad view of women, as what they are often derogatorily compared to is some form of the feminine if they act with any emotion (or express interest in anything feminine or pink.) It also breeds that asshole type of guy who feels the need to prove that he is a "real man" every five seconds by putting women and gays down. This drives D so nuts that at some point I think he might call CFS on my father...or pack me up and move us all into his one and a half bedroom apartment.
• He insults D's role as a father often by saying things to the effect that they need a male role model around to teach them to play ball or act more manly. He suggested that I get the boys involved in "Big Brothers." Well, great program. But first of all, I know there is a long waiting list for boys who actually don't have fathers to get a big brother, and second, if he wants a man to play ball with the boys, he can get his damned ass off the couch and play ball with them.
• He watches TV ALL. THE. TIME. He doesn't even bother to turn it off when he leaves. And it is loud. (and if I think it is loud, then it is LOUD.) He has an obvious hearing loss, probably due to working around heavy machinery his whole life. But he won't do anything about it. I at least have the courtesy to put on my hearing aids when I 'm going to talk to him.
• You can't even just have an hour to yourself sometimes. Because he will just all the sudden have some sort of need or crisis that you have to help him fix NOW!!! Or he'll just want to tell you something arbitrary. He barged into my room one morning at 7am, waking me up in my non-hearing aided state to tell me that the TV wasn't working or something.
• He is completely oblivious to the disrespect he has for me, D and the kids. I have too much on my plate with not enough support to deal with that shit.

The things is, the boys really love him and he can be good with them. And we could have a cool little intergenerational family thing going. But the energy it takes from me to monitor everything and enforce any sort of rules with him is exhausting. You practically have to strap him into a chair forcibly to have a conversation with him. And even then, he is looking the other way and not even paying attention.  I almost feel like I need mediation to deal with this.

Something happened the other night that sort of woke me up. I made an honest and unintentional mistake where I caused some damage to the house. And I hate to say this but it was blindness related. If I could have seen, it wouldn't have happened, or to the extent that it did. I'm already in the process of getting it repaired and it is going to cost me a few hundred dollars to fix it. Which I would do no matter what my relationship was with my father. But the night it happened, I literally FREAKED THE FUCK OUT. The fact that if he saw it, he was going to fucking kill me and I would never hear the end of it. And the fact that I, as a newbie "homeowner" don't know anything about house things, I couldn't just call him up and say, "hey, I made a mistake, I'll pay for the damage, but I don't know who to call or what to do to fix it" really pissed me off. I have had to basically go around and interview everyone I know about it to get advice and referrals. And then, the next day, I was in the kids bedroom putting away laundry and I don't think I had my hearing aids on. Naim came around the corner suddenly and did a loud growl at me because he was pretending to be a monster or a dinosaur or something. And for a split second, I thought it was my dad and he had found the damage. And I was hit with such a panic that it practically blew me over. Over some damage to the house. This is a nonproblem, or a mere irritating annoyance. No one is dying here. Nothing is doomed forever. No civilizations are being brought down. I have to call a repair person and shell out a few hundred bucks. What is living here doing to me? It is the same panic I had growing up. The childish panic of being the loser screwup that I thought I had gotten away from.

The kids are getting older and more impressionable. My tolerance for what he did around them as unaware babies  has dwindled  significantly.  Here is the thing  he is going to have to understand: NOTHING. Not his coffee cups or his poopy dog or his TV or his dancing or his damned house are more important to me than the well-being of my boys. NOTHING. The level of disrespect he has shown for me, D and the boys and the level of disrespect he models in general is unacceptable as the boys grow older and start to understand what is going on. Between now and his next visit in summer, I'm going to come up with a concrete plan and rules that need to be followed in the house...and also hopefully just foster a more cooperative, loving family and household in general. (I may have to seek mediation or someone to help me out with this, I'm too "blinded" by the close ties to see it objectively for what it is sometimes.) And if he doesn't improve significantly, I am going to have to leave this arrangement. I have strong, strong emotional ties to this house. To this neighborhood. And to the idea that my mother wished for when she died that my father and sister and I would stay close and care about each other. But both D and I feel that being good parents, having a positive family life, not having to run up and down the street to see each other and care for each other, having our kids and our kids parents be respected, is worth more BY FAR than a nice house with cheap rent.

Okay, I think I needed to write all that out, but that was totally not what this post was supposed to be about. I was going to say how nice it is to be healthy again. I have had what was probably bronchitis for the last two months. I was coughing nonstop. The kind of coughing that makes your abdominals ache, and keeps you up all night and makes you feel like gagging and just is exhausting. The kind of coughing where people start to look at you funny and edge away. I didn't go to church for two months simply because I knew I would cough all the way through the service. It was often hard to have conversations with people.

I tried humidifiers and cough drops and tea and cloroseptic and gargling with hydrogen peroxide and zinc tablets and sitting in the steam room at the gym and cough suppressants of every kind and everything. Nothing seemed to work for more that a few hours. Finally, I tried live probiotics, the kind you have to refrigerate. I am not 100% sure that this is what did it, but within a week after starting them, my cough improved about 50%. Now, two weeks out, I think I'm about 85% there. I have maybe one or two coughing attacks a day rather than 10 an hour. It is SOOOO NIIIICE to not have to cough all the time. It is the kind of sick where you are not so sick that you can just lay down and quit life for two months or check yourself into the hospital, but you are sick enough that it makes every day about sludging through and just trying to get the basic things done. I was so tired all day I can't even describe. Every minute I thought about sleeping and the smallest tasks seemed huge. The kids watched WAAAY to much TV.

So, I'm back to doing Weight Watchers and planning meals and cooking! (Without someone monitoring my dish usage!) Tonight the kids and I made a really good homemade pizza with pineapple and canadian bacon and lots of stealth veggies for the kids to eat and only 5 WW point for me. Fresh food again!  I'm sleeping 8 hours a night. I've started exercising again. D and I have set up a schedule where I go over there to work fairly early so I can get out of there early and have the whole rest of the day to do stuff with the kids or exercises or do "school" or whatever needs to be done...and I'm actually getting stuff done. I can tell that I still have a ways to go and still need to take it slowly and get lots of rest (I did 20 minutes on an exercises bike my first day back to working out and had to quit early because my chest was tightening up something awful and I was coughing up an embarrassing amount of yuck that I could no longer hide.) But I'm just trying to do 20 minutes a day now and work my way back and make sure I get to bed early. I have limited myself (and made myself) do an hour of housework a day after the kids go to bed. Whatever I can get done in an hour is great, then I just forget about the rest. In the long run, I get more done this way because I am doing it every day instead of being so overwhelmed by the sheer volume of work. (Very flylady of me, huh?)

We are STILL in the throws of potty training and Aaron and I are struggling through some tough behavior issues. But I feel like we are pushing through them as best we can. I've become a much more patient and loving mom lately. I've been able to give Aaron some extra one on one attention and a bit of babying that he seems to really need right now. (I'm sure I'll write more about this later.) D is status quo at the moment. So it isn't as if there aren't problems to deal with, but it is so much easier to deal with problems when you have energy and are not coughing up a lung. And you are not forced to worry about hedge clippers and dirty frying pans.

Still in BlogFog

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.

1. 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.
2. 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.
3. 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.
4. I'm tired.
5. 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.
   
6. 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.
   
7. 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.
8. My goal is to get to bed by midnight every night, and it is now 12:01. So, good night!
   

A Mandatorily (Hopefully) More Cheerful Post

After my last post, Niklas called me and was all "Are you OK?"-ing me 20 times over, which led me to think that I need to lighten things up around here. (And because, yes. I am ok, really. But thank you all for your kind thoughts and words. They really do mean a lot.)

So, lets see: Updates.

D is on his last dose of Vancomyecin tonight and has already finished his other antibiotic. So, hopefully this means he is on the road back to getting a new pump. I think they wait a week or so before they re-culture everything and make sure the infection is gone. Then go from there as far as replacing the pump.

D is gathering opinions about this and finding out some information that leads us to believe that A LOT of careless mistakes have been made. He got a referral to another pain management clinic and he will decide then if he wants them to take over (and if they are willing.) The infectious disease people especially clued us in to a lot that didn't happen as far as infection control in the initial surgery. So I would really have to be convinced that the same surgeon (still in India with no replacement) should redo the surgery. I'm hoping that if it can go to another surgeon, then overall things won't be delayed too much.

***************

Naim apparently does not need glasses. Neither of them do. All is fine, there. He must just be imitating me with all of his "I can't see" stuff. The ophthalmologist was not willing to test or make a determination on colorblindness, yet. I have been trying to test this myself. So far I do notice that Naim CAN match colors, but not verbally identify what they are. This is a good sign but still doesn't rule out colorblindness. He could just be matching shades of grey. Easier to match than to identify with a color word. Either way, it isn't a big deal, I know. But I would just like to know. At this age, everything is about color. People ask him color questions all day long and he is just bewildered. If I knew for sure, I could start figuring out some accommodations and stuff.

They don't have to really ever go back to the opth. unless there is a problem. He said I could bring them back in when they are 5, just to make sure all is okay before school starts and they should be a little bit more reliable patients, then. I may do that, but I am not doing his other suggestion.

Whenever I go to the doctor, either for myself or my kids, I am always a source of curiosity for them. They always want to do all kinds of tests on me and my kids. After traveling the continent with my mother growing up doing painful medical tests to basically find out nothing...I don't see the point. I did not choose to do IVF and genetic testing on my embryos. I did not choose amniocentesis or triple screen. I did do the full-scale diagnostic ultrasound because there was no risk or pain to that. But what would it have helped with? I would not have aborted, and because of my background, I felt as prepared as anyone can be if I found out the kids had Trisomy 21 or something. It was either find out then and risk causing a problem, or find out at birth.

I have done all the screening on my kids to test their function. I have done vision/hearing/kidney testing to determine if there is a problem. These are relatively painless and useful tests that actually help us. I see no point in doing further genetic testing, especially those tests that are painful. This opth. suggested that I take them to a doctor that specializes in genetic diseases of the retina so that they could test for RP and other genetic eye disorders. (The doctor he mentioned actually ended up being MY ophthalmologist.)

Anyway, the test that they would do to determine if the kids have RP and other retinal disorders is called some sort of electro something or other that escapes me now. As soon as I heard it, I knew what it was and had a sick memory from childhood. I'd had this test at Stanford University while my family was on vacation when I was 7. Here is what they do: They immobilize your head in a vice in a dark room with what looks like a satellite dish in front of you. Your eyes are very, very dilated. Your eyes are held open by these sort of whole eyeball sized plastic contact lens things that don't allow you to blink. Attached to these contact lenses are wires. Then, they shoot flashing lights at you. For a long time. A long, long time. I was seven years old and had no say in the matter nor any knowledge of what was occurring. (And in my case, the results were inconclusive so it was all for not, although the test may have improved since then.)

So, this guy thinks I'm going to allow that test for my three year olds? He must be on crack. And for what? To show that they either do or do not have RP? And if they do...can I do anything about it? No. They could go blind by the time they are in high school or not until they are in their 60s. There is just no point to it except to satiate their curiosity and file our genetic makeup in their data files.

I am still haunted by some of my experiences in peds oncology and what those families had to go through and what the kids could or could not consent to. In the case of cancer, the weight is tipped strongly in the direction of making the decision for your kids to have painful medical procedures done. And I understand this. But even then, whenever possible, especially near the end of life, we let the kids have as much say as possible in what medical interventions they wanted. I am a strong, strong advocate of giving kids as much self-determination as is reasonable in deciding medical stuff for themselves. This is why there is no way in HELL I would circumcise my kid. Forcing an unnecessary surgery without anesthesia on an unknowing child? (And I was a very occasional floater in pre-op at the children's hospital I worked at. I probably spent less than ten days in there in three years. And in those days I saw three, count 'em, three kids in for botched or otherwise problematic circumcisions. The risk of the procedure pretty much cancel out any benefits.)

Things like circumcision, braces and other cosmetic dentistry, genetic testing, anything that falls in the optional category for me is a decision that my kids will have to make for themselves when they are older if they so choose. I don't see why this is so "out there" or radical, but doctors look at me as if I have two heads when I tell them I am not interested in having my three-year-olds suffer through an electraopthalthingamajig just for curiosity's sake. So, no eye doctors for the kids for a while. I probably will have their hearing screened again this year.

***************

Preschool for next year is giving me a headache. We went to an open house for one today. The kids LOVED it. Well, Aaron loved it and Naim hated the noise but was tolerant and was more participatory after some of the other people left and it was calmer. It was easy to get to. The facilities were not fancy and obviously most things were well worn (I mean that it lacked the Goddard School's shiny corporate sheen), but comfortable. There was an abundance of age-appropriate things to do. I saw some Montessori stuff. I saw some signs of an effort to include diversity such as books with minority kids in them and things about other holidays besides Christmas, like some dradels, Chinese New Year stuff, etc. The kids were mostly white but not all. I think I saw one black kid and one Asian kid and about 7 or so Hispanic children. There are 18 kids in each class. Wow! But four adults. It seems small for 18 kids, but I can see it being workable if the kids were rotated through different spaces in a center style or something. It is very child-centered and play oriented. Light on the academics and worksheets nonexistent. The playground was pretty cool. It did not have the standard issue play equipment. It had a HUGE sand pit (like as big as my kitchen) with a grape arbor over it. Adjacent to the sandpit was an industrial looking sink. There were also draining pipes and gutters along the sandpit where water could go so it isn't a soppy mess. Obviously hand made by some handy-person. Then there were hay bails, logs, wooden planks, metal tubing...a woodworking bench, basically things that required the kids to invent their own playground equipment. They gave the example of the kids working together to make a see-saw out of logs and planks, or a mountain out of hay bails.

The teacher and other parents were nice and didn't bat two eyelashes about my disability stuff. They seemed willing to work around it as far as parenting jobs. There is nothing wrong with this place that I can tell, and I think the kids would be very happy there. I would probably be fine there as well. The main disadvantage is that it costs more than the other one I'm looking at and I would have to do A LOT of volunteer work. Oh, and it is not entirely inaccessible, but somewhat limiting for a person in a wheelchair. It is just too crowded. Stuff  is too close together. There are a lot of steps everywhere. There are ways to get around the steps but it involves taking the long way around the building. Essentially, I would be on my own for the most part as far as volunteering. There would not be a whole lot D could do except come in and park himself and visit. So there's that.

I'm visiting the other one, the homeschooling co-op, next Thursday. That is the one that is further away, but less expensive and less volunteer work and more things for me to do around the neighborhood while I wait for the kids.

Here is the headache inducing problem, though. I would have to apply at the first one in person at, literally, nine o'clock in the morning on March 3rd. Like there are lines of people waiting outside to apply. I have been told that if I do this, there is a good chance that my kids will get in. I have to have my application ready and $55 per kid. The other preschool takes applications by the quarter instead of the whole year. They do existing kids first and then new ones. I've heard this is very hard to get into as well. So, they don't take applications from new kids until August! What I could try to do, is get the kids in this spring, so we would be existing for August, but that registration is March 11th. Still no help. So, do I apply at the school I visited today, and risk losing $110 deposit if I pull out in Aug and go to the other school? Or do I bank on the other school? I'd be happy for the kids to go to this one, but...that volunteering man, its just a lot. At least at the other school I would be making connections with families that my kids might see for a long time, not just one or two years.

This is the twin factor as well. With two kids who are the same age, it is just so hard to get them both into things sometimes. I'd feel a lot better about my chances if I just had one. Sometimes crazy things happen, like what if I'm number 18 in line, meaning one of my kids is the last one to be enrolled and the other is out? This has actually happened to me, and it sucks. Then, even if there is a waiting list it is pointless. Because you have to have TWO spaces open up at exactly the same time. And that never happens. Do you put one in and hope another spot opens up for the other one? Or do you just pass on both? Because of my inability to drive the kids around, I really have to have both the kids at the same location or not at all.

Anyway, this preschool thing is becoming more trouble than it is worth for me. But I know the kids would love it SO much, so (as Naim would say) "What to DOOOO????"

***************

In other news: My friend J, off and married a woman he has spent only weeks with in person in the Philippines, sorta kinda all the sudden...or something. It is a bit of a strange story where I know I'm lacking some vital details that would probably make it less strange, but it is one of those sort of eyebrow raising things. I do know what people's first conclusions are with this situation and am trying to just not go there in my mind.

Now he is back in the states and still has to work out some kind of huge immigration obstacle before they both can live on the same continent. He thinks it would be more doable for him to move to the Philippines with her and her extended family. This is a guy who has lived the last ten years alone in a house with no family and is one of the most private and reserved people I have ever met. He had trouble moving into an apartment because he had to be surrounded by (gasp) PEOPLE and their noise and smoke and existence. That move in the same suburb was so regretful that he broke his lease and rented a house right next to the one he just sold...but moving to an entirely different country with an entirely different culture, language, socioeconomic level, and different ideas about nuclear families doesn't even cause him a second thought.... 'K.

Anyway, he told me and I sort of gave him a weak congratulations and sort of "whatever-ed" him in my head. Now, I'm thinking that I should have made a bigger deal about it and need to take him out to celebrate or something. I thought of how many raised eyebrows I got, and how many doubts and whatevers and "it'll never work outs" I got when I told people I was going to have a baby. And they all underestimated me and D and the situation and my motivation to make it work, and sometimes they were determined to be less than supportive to prove themselves right instead of being supportive and helpful. So I think I need to assume that he has the motivation to make this work, that there is more to him and her and this than meets (my) eye, and be supportive and helpful.

So, that is on the agenda as soon as I can make time for it. I do have my hypocritical and judgmental moments. But I do try to be somewhat meta in examining my own behaviors and admit when I'm being an ass and make it right when I can. Doesn't always work out, but I try. I don't get what the hell J is doing with his life, but I can either blow him off or be a friend, so I will try the latter.

Oooh, Oooh, It's a Money Taboo

I shall now talk about money. Something that I've noticed that poor(er) people have no trouble talking about, but rich people NEVER talk about. I'm a poor(er) person. So I lay it all out there. I just don't care. I'm not sure what the reason is for the rich money talking taboo, but perhaps it is that whole faux meritocracy thing where richer people are more likely to equate money with success and self-worth, and poor(er) people know that not to be true of themselves. We struggle, we know others struggle. It is all the good fight that we all work at, and in the end it is not what we are.

So it's January. Which means I have to look at the next years budget. And I'm also being forced to think about preschool in January because aparently it is harder to get into preschool than college, and Emmie has me thinking (more on that in a sec), and the 'tax rebate' has me thinking as well. (Click on the above graphic to find out more sustainable and productive things to do with your rebate than consume it on crap you don't need.)

So Emmie and a growing number of people are striking out against the notion that a growing economy of stuff and debt can sustain itself by resolving not to buy anything new for a year. (Food and a few other things excepted. Like, toilet paper and underwear come to mind.) Emmie, who rocks anyway cuz she bucks the convention by not owning a TV and by having her own egg-laying chickens, is going to document her progress on her blog. I think this is a wonderful idea, and something that folks with less means have been doing for necessities sake. It is really nice to see people with at least some means doing it for all the right reasons.  I need to do it more for both reasons, although I'm just going to take little steps and not say "a year!" --more like a month at a time.

So, here is the preliminary budget. Yes, I'm going to show it to you. This is how I live on $32K a year with two children. Things to know:

• D and I essentially have separate financials. But it is very informal in that sometimes I buy the groceries, sometimes he does. Big, fixed bills we do on our own, little stuff is just whoever.
• I'm blacking out certain information, not so much because I care if you know where my income comes from, but I'm not sure my employers would want you to know specifics like that. Don't want to be dooced, so better safe than sorry. Also other blacked out info is just identifying things.
• Some of my income is from SSDI. Until you have walked in my shoes, gone to my job interviews, been denied coverage due to preexistings and been fearful for your life and health when you had no medical insurance, sacrificed your job to help your husband/partner live and be kept out of a nursing home when there is no other medical help available to access, and lost your vision and hearing on the job whilst nearing a deadline you can't complete because your alternatives are vanishing before your eyes...you don't get to say anything about that. Right now, SSDI is the best, most secure way to insure that me and my kids have some sort of income and medical care. You will notice that I still pay quite a bit for insurance premiums. If we ever get universal healthcare in this country, we'll talk. Until then, if you have a problem with it, STFU.
• This is the projected budget in a worst case scenerio sense. Certain decisions haven't come to pass yet, such as preschool, what classes the kids might take (tumbling, etc.), and what formal curriculum (if any) I use for them next year.
• Yes there is porky fat in it. Yes some of it has to go. Those decisions have yet to be made.
• What isn't even on there is stupid purchases that I don't really need to make. Like pizza delivery  or impulse music or book purchases. I do do these things, but I will go for weeks or months and not do them, and then binge on stupid purchases for a few weeks. Sure, every once in a while I deserve a dinner out...but I'd like to not let my checking account hit Zero and instead take some of the surplus and put it in savings.
• I do have some savings. I have a money market account and a retirement account. They probably don't have as much money in them as yours does, but they do exist.
• I'm lucky to have no debt. I did have student loans and some credit card debt coming out of college but a) I was lucky to have recieved a lot of financial aid for college; b) I took, ahem, NINE YEARS to get a bachelors and masters, mainly because I worked every semester, took a light course load and paid expenses as I went, c) when I started working, I paid off my loans/cards in huge chunks, like $500/month, and d) I have one credit card for emergencies, I haven't used it since 1999. Yes, I am the dreaded "deadbeat" credit card holder. My psyche can't tolerate debt, but I'm not judging those who can/do. I can see the draw.
• As you can see, I am extremely fortunate to have great rent. The trade off of this is that I don't own my own home and  I LIVE WITH MY DAD. I haven't decided yet how fair of a trade-off that is. It depends on the day.

So here it is: Budget (ptf). I will probably not have this up very long. But my purpose in displaying it is that I think it is okay to talk about money, it is much easier if you understand that it doesn't define you nor is there one right way for everyone to manage it. And I am always curious as to how others spend and save. What they pay for groceries, preschool, etc. How they save money, what they sacrifice and what they won't give up. What would you do in my situation? What do you think I'm doing that's outlandish? Or good? I'm not going to take it personally if I disagree with you...we are all different. I'm showing you mine, so you show me yours. (Okay, you don't have to do it in as much detail, but let me know some of your thoughts on budgeting in general.) Also, there is a preschool post coming up and financial stuff is a big part of that.

Oh, and my big, ridiculous $300 tax "rebate" will probably go into savings, if I even get one...I think I might not make enough?

Oh! I just have to share this with you. It is related to sustainability. Today I stopped at Walgreens and they gave me a few canvas grocery bags in an effort to reduce the use of plastic bags. And the clerk put my bags in a plastic bag! Before I could say anything, she was talking to the next costumer. I thought that was hilarious.

Hospitals, Kiddie PT, Hospital, Mars

Before I say this thing I was thinking today and you all think I'm nuts, let me just say that of course, it sucks to be sick. It sucks to have pain. It sucks to have your life stalled by hospitalization and illness.

But D and I and the kids are comfortable around hospitals. We are comfortable around healthcare people. More than that...we are extremely grateful for many of the health care professionals in our lives. Sometimes, we even enjoy them and getting to know them and their company. We have an affection for them and the whole health care system.

Not that there aren't certainly terrible problems with it, and not that we don't on occasion run into an asshole doctor or nurse. I'm not talking on a systemic level that we have an affection for health care, a comfort in it. On a systemic level, it is quite fucked up. But on a personal, day-to-day level, there is comfort there.

I was just thinking about this today, because I'm getting tired of hearing from a group of women about how they would NEVER have their baby in a hospital and hospitals are for sick people, not pregnant women and how it is so unnatural and sterile and awful and how could anyone willingly have their baby there?

Okay, first of all, I have no problem with the decision to give birth at home. If that is where you feel comfortable, great. I assume you have weighed the pros and cons and evaluated risk and made an intelligent decision based on your needs. Women have been treated crappily in the whole OB field. And women should get to make whatever educated decision they want to make about their own pregnancy and birth. As should all people who utilize health care. So I'm not saying there is anything wrong with having your baby at home.

But, I wish some of these home birth advocates could understand that this is an individual decision and a home birth is not right or even plausible for everyone. It is luck and (in our society) a little bit of privilege that allows some women to be able to do this. In a perfect world, it would be nice if everyone could give birth either in their homes or in lovely, tranquil birthing centers with angelic midwives...and also have a Level 1 NICU and trauma team available if need be. In a perfect world, we should not have to choose between the two.

But to say that hospitals are for sick people and not for pregnant women is to not only ignore people like me, who were in the middle of pre-eclampsic, retina-detached, double-breach twin, premature labor--hey, me and my guys could be dead without a medicalized birth. But also it is to ignore the fact that before giving birth in the hospital was common-place--a whole lotta mothers and babies DIED in childbirth. A whole lot more than do now. Get your ultrasounds and you amnio and whatnot, but then say that the medical field will only harm you in birth is a little hypocritical. (Like who knows if amnios are traumatic for the foetus?)

And I understand that some people just aren't comfortable in the hospital setting and will actually do better during labor if they are comfortable at home. And then a home birth is how it should be for them.  But this is not the case for everyone, even if there are no significant high risks for the birth. But for others like myself (even if I was carrying a low risk singleton) the hospital is where I am most comfortable. And my feeling is, if mom is happy, baby will be, too.

D and I depend on health care workers a great deal. We know that the vast majority of them do this work because they care. When my mother was ill, my family kept commenting about how nice the healthcare workers are like it was something above and beyond and unusual. I thought that was a sad statement by them. This is what it is to work in a caring/helping profession. This acceptance of bodily fluids and grossness and dysfunction is part of that caring. Sure their are crabby nurses (and doctors are a different beast, they are often driven more by ego than caring--but still there has to be at some level, a need to help people) but in general these are a good lot of people to be around and trust your life with.

Its not the fact that people decide to home birth that bothers me. Again, I think that's fine. But even then, you know you will have the hospital as back-up (and hopefully you make it on time). But don't use health services for all your prenatal and as your emergency back-up and then bitch and moan because god forbid anyone should dare have their baby in the hospital. The second your baby is wheezing with a 105 fever, you are going to be right there. So, choose whatever kind of birth you want, but quit putting down those of us who choose the hospital and the hospital (that you depend on) itself.

</rant>

***************

In other news, Aaron and Naim went to their first tumbling class on Monday. It is really more like kiddie PT to me. Aaron was kind of a little pisser during part of it. He flung himself down on the mat and refused to participate in several things. But he got better at the end. Naim was absolutely amazing. He followed directions, he participated in everything. He smiled and laughed and had fun. He proclaimed "IIIII did it!" after every little accomplishment. I think he might be in love with the instructor.

I think the main element that helped Naim was that it was quiet. I mean, quiet besides the teacher and the six kids. The room was huge. Half of it was empty and the other half had balance beams and mats and gym stuff in it. But it was quiet and focused and structured. He found his element. I about saw confidence growing out his ears right before my eyes.

Then, the instructor even made me fall in love with her because she came up and talked to me afterwords and could already distinguish which one was Naim and which was Aaron and treated them as two separate children. This is my pet peeve with others now. They are old enough and different enough and different LOOKING enough that there is no reason to be lumping them together as "the twins" anymore. I mean, its okay if people get their names confused at first or lump them together when it is appropriate to. (i.e. Are you bringing the twins with you?) But the more I thought about the lady from Sporties for Shorties and how she insisted that "they just weren't interested," the more I thought that she must have meant Naim. There is no way you could have said that Aaron wasn't interested. Naim? okay, yeah maybe. Because he is shy and slow to warm up to things. So, that irritated me a bit because she couldn't even distinguish between the two and separate them out as individual kids. So, anyway, that was a plus for this program. She actually got that I have two separate kids, not one "twin" in two bodies.

And I had told this woman nothing about my kids beforehand (I had not signed up yet, I was there on a free pass coupon) and she was not phased by Aaron's behavior (which definitely could have been described as disinterest, although knowing Aaron, I would describe it as Taking a Stand Against Some Strange Thing Mom Forced Me Into Without My Permission So I Refuse to Admit that I Might Like It.) I was a rebel kid. I understand rebel kids. Aaron is a rebel kid. Anyway, the teacher picked up on that and was confident, as was I, that he would be fine in one or two more classes.

She also got that the kids couldn't do some of the things the other kids would do. Mainly anything involving jumping or springy legs.  She was unphased and understood that this was not an effort or interest issue, this was a developmental issue that needs work. This class is really perfect for that. The kids turned out to be between two and a half and three and a half. So in all other ways, my kids are right in there size wise and maturity wise and what not. Its just the gross motor that they are still behind on. But this is exactly what they need for that. These classes are getting a little pricey. I almost wish I could dump Sporties for Shorties and have them do this one twice a week. But I already paid for SFS. But it gets over at the beginning of March, so maybe I'll quit that then and just do this. We'll see how much they end up liking SFS.

As much as I think the kids will be happy with tumbling class, I forgot that I might not be able to live through the moms. Not that they are not nice or anything...just hard for me to relate to. First, I am shut in a small, darkened room with them as we stare at our precious, preciouses through a two way mirror. Very hard for me to communicate in there. Second, I live in a neighborhood where the main employer is a very famous high tech company that pays its empoyees really well. These women are well-dressed housewives with (mostly) daughters in ballet class here and...well, just the level of dance studio gossip that I was able to decipher? It was way more intense than I can handle. Reminds me of skating moms. I could care less about so-and-so and her daughter and what class she got to advance to. I just don't have any idea what to say to these people. They asked me which kids were mine in the class and I said,  (jokingly) "the blond over there who is waving his hands around so the teacher will help him off the tumbling mat and the one over there who has flung himself down on the mat in protest."

"Oh," they said. I couldn't think of anything to say after that.

****************

Back to the hospital...it looks like D will get out on Friday. He will be coming home with an open wound and a PICC line and IV. So I'm not sure what my responsibilities will be there yet. Probably nothing with the wound as home health will cover that. But probably some kind of stuff with the PICC. I'm hoping they put him on one of those all day infusion pumps so I would just have to go over once a day and change the vanco and flush the line. I'm hoping not for twice a day. And I'm hoping for no wound vac. That the wound will just heal on its own no problem. I loathe the wound vac.

D is a bit grumpy as his spasms are not under very good control. He says it isn't terrible, but he is getting anxious to get out of the hospital so he can control his own medicine. He thinks he can get better control on his own than the way they are doing it. He is going to need to rest and lay down a lot, so I'm losing my main kid break device. I told him to do whatever he needs to do to get better and manage this, just don't be a damned martyr about it. He tends to agree to things I ask and then blame me when he has overdone it. I keep telling him, I'm not the boss of you... you manage yourself, you set the boundaries, you let me know what you can and cannot do, BECAUSE I AM NOT OMNISCIENT. But in fairness, that means that I will be extremely limiting my asking for stuff or to go do stuff or whatever. Hopefully the next several weeks will go fast.

For some reason, we always take pictures at the hospital. I think it is because we run out of things to do and someone always has a camera. (Aaron is anti-camera right now, so there are very few pics of him.) We went up Sunday (pre-haircuts) and then today (post haircuts.) The biggest hit? The ninth story window and the itty bitty cars below. That, and pushing buttons on the 8 elevators we ride to get there.

D and Naim lounging in the hospital bed with the laptop, of course. Aaron standing on a chair looking on.

Aaron enjoying the view.

Naim hanging in the wheelchair.

Naim practicing his breathing with one of those lung exerciser things that I can't think of the name of.

Everyone reading Dora books on the bed.

****************

Bonus from Aaron:

I've been working with the kids on memorizing their whole name and address and stuff. Here is what Aaron said today:

Me: What is your name?

A: Aaron

Me: What is your whole name?

A: Aaron _________.

Me: What city and state do you live in?

A: [City, State].

Me: Do you remember what street you live on?

A: Mama? I don't want to be from [City, State].

Me: You don't? Then where are you from?

A: I be from Mars. Aaron ______ lives on [Our street, our city], MARS!

(I blame this on D. They are currently space shuttle and mars rover crazy. And they may not jump around like the other kids, but we spent 25 minutes in the apple store waiting for my dad at the genius bar and my kids were little pros on all the computers at the little kid table. Hey? Which skill will get them further in life, Grampa F.?)

Multiple Systems Failure

Hope you all had a good Thanksgiving.

D had surgery on Tuesday, so we had already planned to reschedule our Thanksgiving for sometime next week. Surgery went well. He was sick for a bit afterwords and wasn't released until today. Last I talked to him, he was getting ready to be discharged. That was several hours ago, so I assume he is home now. I'll call him in a bit and get the report.

This is the pump that they replaced. It is a Medtronic infusion pump. It is kind of like having an IV on board in your body. In his case, it delivers a medication called Baclofen, which helps control spasticity. Since his spinal cord injury is incomplete, it means that his brain does get messages from his body, they are just the wrong messages. It is kind of weird. He can think about moving his toe and his toe won't move but he says it feels all tingly. When things touch his legs and stuff, sometimes his brain will get the message that it is dangerous, like when you touch something hot and your hand automatically spasms and springs back. So, he is having these spasms all the time for no real reason. It is uncomfortable and annoying, so thus the Baclofen. This new pump will only have to be filled every three months rather than every month, so that is a good thing. To refill it, it is a big rigmarole where he has to call ahead to order the meds and go to the doctor and they have to stick a needle in and empty all the meds that are left and refill it. It's just one more thing that has to be done, so it will be nice to have to do it less often.

So that went okay, but it complicated the matters yet to come. On Monday night, I was just getting ready to get the kids to bed and I scooped up Aaron while he had all his accoutrement's that he needs for bed in his hands. (Trucks, trains, blankets, etc. Aaron travels with many, many necessities.) He was in a good mood and didn't do this on purpose, in fact, I can't quite tell you what he did exactly, but in his usual squirminess he smacked me in the face with something. In the eye to be exact. In the right eye, the only eye I have that's still barely worth a shit. I remember dropping him and falling to the ground. Very. Bad. Pain. Indeed.

I was hoping it would fade in a few minutes, but it didn't. I couldn't see anything and I immediately got some lubricating drops and flushed my eye out. After a million surgeries, my eyes don't tear up right anymore and are a breeding ground for infection. And who knows where Aaron's slimy little hand had been, you know?

I spent 20 minutes trying to recover, no dice. I finally put the kids in bed. Very angrily as a matter of fact, but they weren't cooperating and I NEEDED them to cooperate. So, that wasn't a proud parenting moment.

Every few years it seems like I get some sort of abrasion on my eye. I don't know why it happens to me so often when it seems to happen to other people, like, never--but maybe it is because I am no good at ducking? I don't know. But anyway, I knew the drill. So, and don't get on my ass about this--I'm a professional, damn it--I remembered that our cat Scrapper had a scrip for an NSAID eye drop and an antibiotic ointment for eyes before she died. It was terramycin, which is a little more for rickets and shigella than the macrobiotic I really needed, but I figured it couldn't hurt. I med up my eye, and fashion an eye patch out of Kleenex and an old cataract eye shield I had. And took about oh, 6 Tylenol PMs and went to bed. Thinking, this will be better in the morning.

Nope. I wake up in horrible pain at around 4:30am. It is so bad I can't hardly breathe and my hands are shaking. I Know that D has to be at the hospital for his surgery at 5:30am. I briefly consider tagging along and going to emergency, but I know that it will just stress everyone out. So I rule that out. Then, my next idea is to get the kids and take the train down to a nearby smaller hospital emergency. That emergency room is quick quick quick as far as emergency rooms go in this town, (heh, I know them all), and easy to get to. Its only two blocks from the train station. But I have two concerns. First, my insurance could decide not to pay if they determine that I had a nonemergency. Second, even though I could see nothing, the two blocks and the train worried me. It wasn't the not seeing so much as the fact that I was in that amount of pain where you are just so easily distracted. My "Samurai Awareness" was gone. I didn't feel like I could manage the kids and dealing with strangers in this amount of pain. It also seemed like one of those things that if I did it, everyone was going to think I was weird and get on my ass about it.

So, I waited, and waited and waited until 8 am. I was going to call someone and see if they could take me to an urgent care or watch the kids while I went or something. Next systems failure. My computer. Something was wrong with it. It wasn't working or talking to me or nothing. It was an easy fix later on, but at that time, I couldn't figure it out. Too distracted, no vision at all and no ability to problem solve. So all my phone numbers, gone. I can't see a phone book and usually have trouble with directory assistance.

So I wrung my hands for an hour and agonized over my hatred of calling people for help. Finally, I looked through some Braille numbers that I had made three years ago when I was blind and had no computer after the kids were born. I found someone from church that I really don't know that well, but she has always been very nice and she gave me her number back then "if I ever needed anything." So, I called her at 8. She answered but she didn't have a car available and a good hour and probably a bunch of phone calls from her later, I had a ride from my wonderful RE who was at the church at work that day. Actually, she came to my house and we drove my dad's car. Car seats and all that.

So, that is my long story about how I asked for help. Which I still hate. You know one thing I hate? When you call someone asking for help, trying to be cool about it and not just bawl on the phone and freak them out, and they can't help you so they go through 100 options that you've already thought of. I mean, I'm not saying I'm mad at them, but it is just like, okay, for me to be calling you, who I barely know?...I've already thought of a neighbor, a family member, a friend, D, calling the pharmacy for scrips, the lift van, etc. I'm calling you out of wits end sheer desperation and I can't explain why I can't just call Casey Eye Institute and get one of my 55 doctors to give me a scrip. If I call there and even tell them I'm blinking funny they will haul me in and run 25 day-long tests on me. I was trying to not have to go ALL THE WAY downtown, but yet still see an ophthalmologist so I wasn't completely negligent. Compromise with me here. But okay. She meant well. My point is, asking for help is hard and it sucks.

But Sara, the woman who ended up helping me, was totally lovely and let me direct the goings on and was very wonderful with the boys and had no problem driving my dad's car and is just an all around wonderful person that really, consciously puts the UU principles into action better than pretty much anyone else I know. She drove me to an urgent care, they shipped me to an ophthalmologist in the same building, I got an anesthetic (Oh, thank all the gods, finally), and he gave me a better broad spectrum antibiotic and packed up my eye like only an eye doctor can and I was outta there in under two hours. Sara and the boys waited in the lobby area where they could watch bulldozers at a construction site and so that was just neato mosquito for them. So, it worked out.

Then when I came home, I did something I don't think I've really done since before I was pregnant. I slept and slept and slept. It was like my body shut down and spent all its energy on healing my eye. I didn't take any pain scrips specifically so I wouldn't sleep and so I could still take care of the kids. But my body decided for me. I have been sleeping for almost three days now. the pain was still bad and the only way to deal with it was to turn all the lights off and sit quietly and not move my eyes at all. My right eye was patched shut so I couldn't open it, but even moving my left eye around made my right eye move and that killed. I put on just enough lights for the kids to barely be able to see, and we spent three days with me being totally blind and them pretty much as well.

I cannot even count the number of TV hours my kids took in. TV saved us, I'll say it. I love TV. At least when I'm sick. I would get up, get them dressed and fed, get a pillow and blanket and lay on the couch while they watched TV. They watched Noggin from around 9 to 12, and then I would get up and feed them and stuff. Then more Noggin from 1-3, then I would get up and give them a snack and turn Noggin (which changes to the "N" at 3, a teenage channel) to PBS. Then let them watch kids shows on PBS from 3 to 5:30. No nap because they weren't tired. Then get up and feed them, play with them for an hour, put on a DVD and bed at 7 or 8. Then I went to bed. And this actually worked! They were SOOO good! I was amazed. They knew dad was in the hospital (or hopisal, as Naim says) and that mama had an owie on her eye and a BIG BANDAID on it. And they cooperated. No messes, no fighting, they would play while they watched TV. Sometimes they would come over and lay with me and snuggle while they watched TV. It was so helpful, yet kinda scary!

I did go feed the cat and D's house. But even there, when I got there, I slept while they played, and then we came back home. D's dad was nice enough to go and get me the rest of my antibiotics so that saved me a trip up there and gave me more time to sleep. (oh, the Dx was two big, huge abrasions on my eye...just as I expected.) And that way I didn't have to smile politely with my big, pathetic eye patch on when Naim told strangers (like I knew he would), that "mama's got an owie on her eye and daddy's in the hopisal having surgety.") Love those conversations. Those always lead to my fear of DCS being called on us.

My eye feels about 75 percent better today. I still haven't gotten my vision back yet. I have some of it, I'm not walking around with the lights off anymore completely blind, but it still isn't as good as it was. I'd give it a couple of more days, but by then if it doesn't improve, I will probably have to adjust to it being this way permanently. Whenever I lose vision, I just adjust in silence. No one ever seems to get that it is still hard and a big adjustment when I lose vision or hearing. I think they think I'm too far gone so what is a little more? It was kind of the same way when D lost his foot. No one seemed to really get that he would have to relearn how to transfer and balance and how to do different things again. It was just, oh, he doesn't need it. So, if my vision doesn't improve in the next couple of days, I will be going through my usual adjustments and adaptations privately and no one else will notice. Its probably for the best. If they did notice, they'd probably just think there is even more stuff I couldn't do.

I was going to invite my friend J over for a non-Thanksgiving something or other today. A meal that isn't turkey or something. But that didn't happen. And now I have 60, yes 60 emails to go through. So, if you sent me something, I'll get to it eventually.

Despite all this unpleasantness, I'm very thankful for many, many things. That D and I are still reasonably healthy and that he made it through the surgery OK. That I had friends who were willing to help when I needed them and that I found the good sense to call them. That I had my dad's car and that we didn't crash it or anything. That my eye wasn't worse and didn't need some kind of major hospitalization or something. That my kids were WONDERFUL, absolutely WONDERFUL the last few days and they have enough intuition to know when they need to be caring and step up and be a little better behaved. That next week sometime, we will all sit down as a family and have turkey and apple pie and all the other yum yums. And that vision or even less vision, I have the resourcefulness and the skills to get our family together and care for them and make a big meal and eat it and all that good stuff.

Our Pre-Preschool Year and Other Thoughts on Homeschooling

This summer I was busy with several projects, most of which are just about finished up successfully, and the kids and I kind of had a, well, a blah time. Not that it was so bad, but we spent too many days in the house doing nothing or watching TV while I tried to work and get things done in spite of them. There were a lot of days were their needs were all met and stuff, but we could have gotten more out of the day together.

One of the things I wanted to do in these preschool years is to "try on" homeschooling. And so I vowed that in September, the kids and I would get to it. We would, at a two and a half year old level, start "school." It took until about September 15th to get started, but we finally got things off the ground and it is going very well so far.

I am using a curriculum. This has been a bit of a source of controversy in my head. I have read lots of John Holt, and I think there is a whole lotta sense in the whole unschooling practices. And then I know me. This is more about me than the kids at this age. If I "unschooled" in the purest sense of the word, I would go absolutely cuckoo bananas insane. And, especially at this age when the kids day depends so much on how hard I work to make things happen, I'm afraid our days would run together into many more blah days of nothingness. I need a plan. At least some semblance of one. I need goals and schedules. I need expectations and at least a tiny bit of assessment. I need a curriculum. And I need this curriculum to balance out my need for some form of daily structure and accountability and the kids need to be flexible and spontaneous two-year-olds.

I have found this in "Funshine Express." I am really liking this program so far. It is intended for preschools and daycare centers to use with kids from ages 2-5. Each month, I get a kit with materials for three themes. It comes with lesson plans, materials for art projects, visual aids, and book lists. There is the (cringe) letter/number/color/shape of the week/month stuff which I thought I might not use, but turns out---the kids are really getting into the letter of the week stuff. They like these little phonic poems that go with each letter, they repeat them and want them read over and over again. It also has a list of library books for each unit, recipes for easy, fun little snacks, outdoor activities, calender and weather stuff, math games, etc. It is really easy to pick and choose what you want to do and most things can be adapted a bit since my kids are on the younger end of the age range. There are songs and a CD, finger plays, suggestions for 'field trip' activities, it is really quite well rounded. Very traditional preschool, but pretty all inclusive.

Cost depends on how many kids you purchase supplies for. You can pick any number from 2 kids on up in even number increments. So for our 2 kids, it is about $320 for the year (when ordered a year at a time and with an early-bird special coupon). When you consider that I would have to pay approximately $400 a month for the minimum 2 half-days of preschool a week for both kids ($4800 a year, gulp!), then $320 for a year of 5 days a week (or more) of activities, it isn't bad at all. It comes out to about $25 a day per kid for preschool vs .66 cents per day per kid with funshine express. Obviously with preschool you are also getting day care and you can go do other things, but when $25 a day is out of the question anyway, 66 cents is a good trade-off.

I know that there are wonderful, creative moms out there who can come up with exciting things to keep their kids busy everyday without a curriculum, but I'm not one of those moms. I can throw crayons and play-doh at them, but I would not think of making paper mache apples out of newspaper and a water/flour mixture. I can give them a snack of bananas and pretzels, but I would not think of having them make their own "porcupines" out of bananas, peanut butter, pretzel sticks and raisins. These are things that are not hard if someone tells you what to do, but hard to come up with on your own. The kids really get into this stuff.

Also, I have wanted to use the library with them more, but I have trouble actually picking out good books for them. I cannot see well enough to select particular books, and browsing is also difficult. I've asked the librarian for help, but they will maybe give me one or two suggestions. Now, I get a book list every month that I fax to the library. About a week later, I arrange to pick up the books they have selected for me by doing a teacher pull. This month, they picked out 26 really appropriate and on-theme books for me. I could have never done that. Aaron is in heaven. And so am I. Librarians Rock!

Our October Funshine Express Goings-On. The Bulletin board has the calendar, weather, number, shape and letter of the week. By the end of the month it gets all filled up. The stack of books on the right is this month's library haul. The Orange packets are project materials, we've already used some of these up. And the other stuff is various games, visual aids, etc. This isn't even all of what is included.

So, here is kinda what I do: They send the box of goodies about three weeks in advance. I spend sometime the month before prepping and cutting materials and getting an idea of what supplies I need and translating stuff I want into a form I can access. Probably a total of 3 or 4 hours or so advanced monthly prep work. (This would be much less for people who can see.) Then, each week, I look to see what supplies I need for the week. Nothing unusual here. Mostly stuff you have on hand like glue and construction paper, or groceries you would buy anyway. Then each day, I maybe spend 15 minutes deciding what to do and getting stuff ready for it. And then we have "school time."

School time can run anywhere from 15 minutes to 2 or so hours or all day with things spread throughout the day depending on what is going on and the kids' mood. It starts with calendar, weather, a review of the letter/number whatever, and a library book and usually a song or poem. They both really like this. I have to let Naim stand up and run around a bit during this time, but other than that, they both participate and look forward to it. Then what we do varies greatly. Usually there is an art project, or maybe cooking something, or a 'worksheet'. Yes, it does come with basic letter/number coloring worksheets. Naim usually doesn't stand for these, so there is nothing forced here. Aaron likes worksheets and likes for me to go hand-over-hand and trace the letters with him. Basically, after calendar, I pick about three or four activities for them to do and if they do them, great. If not, no big deal. Usually they will at least try everything and if they don't care for it, I don't force them to do it. In general, they like most of the activities so far. We usually try to go outside after that. Sometimes there are activities to do outside like collecting leaves or doing some kind of game. But if not, they just play at the playground or something. This is Oregon, and we are Oregonians, so we go out rain or shine. The weather is hardly ever life-threatening here.

I find that when you have a theme to work around, you can find fifty thousand ways to tie in everyday life into that theme. Where else can we find "B" words? When our theme was forest animals we went to the forest and saw the squirrel, etc. Without this 'backbone' of a curriculum, I'd probably rush through my day without stopping and noticing certain things that we can learn about in those teachable moments. The curriculum helps me catch those and slows me down.

I'm also doing a bit of record keeping and assessment. I am only doing this to get the feel for keeping homeschooling records, which to some extent is required by the state. (And also for my own 'defensive parenting' paranoia.) Funshine comes with a rather basic assessment tool based on head start guidelines, so we will use that probably two or three times this year. It works for our purposes. And then I just jot down a few notes about what they did each day, and I'm done.

"But what about SoocialiZAAAATion?" That is what everybody asks about homeschooling and it is about the least well-thought out question on the planet. Anyway, so I've also built socialization stuff into our days. We go to the gym two days a week. One day, I take one of them swimming with me while the other goes to childcare (where they do stuff with other kids and adults!). The other day, they start out with a thirty minute "gym" class before they go on to childcare. Two days a month, their healthy start teacher comes to see them and they do a lot of socialization role playing and the like. Once a week they are in the church nursery, and once a month they are with my covenant group's kids, and another day a month they are with a girl during my RE committee meetings. Twice a month they go to the children's museum where they take a class in either clay or painting, have story time, and then play in the exhibits. Once a month they hang out at the library. Two to three times a week they are at their dad's house in which they will interact with a myriad of nurses, grandfathers, friends, and UPS drivers or whoever shows up because that place always has a thousand people coming in and out of it. They play with other kids at the playground at least two or three times a week. And hell, I'll even count the couple times a month they spend in the Fred Meyer Playland while we shop for groceries. So, I think they are covered. At two, they probably have a better social life than their mother.

So far, "homeschooling," such that it is at two and a half, is really fun. It is a lot of work, but fun and I have still been able to earn a bit of money on the side (more on that soon). I have a loose idea of what kind of structure I will use as they get older. Of course my plans may all go to hell as what I need in a curriculum is superseded by what they need. Right now we have a good match, I think. But I can see how they will have more and more input into what and how they learn and that will evolve as we go along.

We may get more unschoolish, we may not. Or one kid may and the other may not. Aaron really likes traditional school, but Naim really likes structure, so who knows. I can see myself using a Montessori approach to teaching reading, or whatever works best. (Hey! I'll put the decades long reading debate to rest right here: Phonics vs. Whole language? You need both. DUH!!! Some kids do better with more emphasis on one approach than the other, but all kids need some of both. So, how we teach reading will depend on how they learn it, but it will be an incarnation of both phonics and context/language based activities.) Once the basics of reading are learned, switch to a world history/science framework (a la "The Well-Trained Mind"). Language is something I can easily see myself being able to teach via unschooling, because I know I can teach it on the fly and catch all those teachable moments. I actually can't wait to teach world history via those "Story of the world" books as a spine text. My own world history education was abysmal, as well as the utter and total failure that was my math education.

Math? Not so much. This is where a good match of teacher and student will be important. If my kids were left to me "unschooling" them about math, they'd never learn a thing because my life revolves around avoiding math at all costs. We need a curriculum for math for damned sure. This again will depend on their learning styles, but right now, I'm all excited about Math-U-See. I recently watched the 45-minute demo of Math-U-See and I about cried. I finally learned why in the holy hell jumped up fuck I spent 2+ years suffering immensely through factoring polynomials. Algebra finally made an iota of sense to me. Seriously, I was jumping up and down in my room screaming about how easy it was to understand. The other math possibility is D. D is a math guy. D could definitely unschool math, probably up to vector calculus if he just had enough time with the kids. So, he will definitely be a factor in math, but it is up in the air how much he will be able to do from day to day.

D is also a resource for music. D played violin and a few other instruments for years before his accident. He was all Suzuki-ized. I think we will start the kids on violin. D thinks he could teach them in the beginning with the help of this curriculum, and then if either really develops a propensity and love for it, we would see about getting them a professional teacher. (I'd also like to see them take piano, because it is so foundational as an instrument, but that would be a harder challenge to meet.)

For PE, we would probably do whatever sports they were interested in through parks and rec programs. Many of which incorporate the kids from our neighborhood school. Art is a bit harder because both D and I kinda suck at it. I could do basic elementary art, but there are also art summer camps and stuff if they wanted to go further.

Art and things like foreign language can also be done through the coop. As well as a whole bunch of other stuff like field trips, science stuff, drama, and even clubs like Lego robotics and an ASL club. The coop also provides for the mandatory state testing ( and even SAT prep down the road.) They can learn ASL from me and also through classes from the coop. I'd love for them to get as much Spanish as possible, because this is Oregon and you really do need it. I think I could get them through the early years of Spanish, perhaps with the help of Rosetta Stone or some such. Then there will be religious education through the church, which also has a really good sex ed program as well.

Now, of course, all of this may completely change as they start telling me what they want as far as school goes, but I am extremely fortunate to live in a setting where there are way more (mostly secular) homeschooling and community activities than any kid could ever do. The challenge will definitely be narrowing it down. There are budgetary considerations, but really, nothing in and of itself is that expensive. It will be a matter of prioritizing and scheduling. There are also huge homeschool curriculum books sales and swaps of used stuff for cheap around here. I can see getting by on a, say, $500 a year homeschooling budget, give or take. Much better than a $12K to $20K or more private school tuition.

Public school is still there as an option, but at this stage in my thinking it is like a back-up, back-up, back-up plan like if I had horrible money problems or health problems. Or if the kids just aren't happy with the way things are going at home. It is very important to me that I have public school as a back up (as well as for anyone else who needs it), so you will not be hearing me ditch public school and I will