Twinkle Little Star

I Got Me a STAR Today!

Lurker Reader JDL asked me several weeks ago to write about how the hypothyroidism/Weight Watchers was going. And I never wrote about it because a) I think diet blogs are boring for everyone except the author; and b) losing weight doesn't count until you get up to about 20 lbs. lost. Anyone can lose 5 pounds. Get to 20 and you can actually say you are getting somewhere. So, I decided I would wait until I reached the big Weight Watchers 10% (loss of your starting body weight) goal.

Which I reached today. Now, if I tell you this, you are going to know how much I weigh, but I don't get what the big deal is. You can look at me and SEE that I'm overweight, and probably guess my weight within 10 or so pounds. I can't hide it as well as I hide my crack habit, you know, so why try? So, I am 5'5" tall. And I've lost 19 lbs. My 10% goal was to lose 18.8 lbs. I will pause while you do the math. Yes. That is how much I weighed on January 1st. It is the most I've ever weighed save pregnancy (where I got up to 205! Yeep!!)

I did something different with WW this, my second time around. I jumped in my first try last year and adhered to it perfectly from day one. Then I got really pissed off when after only one week they dropped my point limit by two points. It sort of threw me over the edge. But I kept at it for two months and netted a total loss of like 2 pounds for all that effort. Then I quit, cold turkey.

This time, I spent all of December tracking points with weight watchers (I do it online), but eating whatever the hell I wanted. I decided to ramp up into it and also kind of get a baseline for how many points I was eating already. It was the holidays, and my only rule was that I had to track everything I ate, no matter what. It got to be kind of perversely funny. I would eat up to 75-85 points some days. (I am supposed to eat around 25 right now.) I wondered if I could break the points calculator. I wondered what the top amount of points any one on WW had ever logged and if I was getting close. It was a fun, maniacal experiment for me. Hmmm. How much is a WHOLE PACKAGE of Oreos, I wonder? What about double stuff. It was kind of educational as well. I found out that these chocolate chip muffins are 13 points each and these other brand are 6, and I really can't tell the difference in taste, so now I know what brand to buy if I'm going to eat junk. It was gluttony at its finest.

But January 1st, I reset my starting weight, and eased into the plan. Reducing my points each week and slowly becoming more compliant. I made small goals for myself and met them. Like, this week I am just going to get at least one activity point a day. (I'm going for 28 total.) Or this week I am going to meet my water and milk requirements. I don't think I was totally compliant with the points until about February. I also decided not to recalculate my daily points when WW told me to, I was going to do it on my timetable. I think they want you to do it every 5 or 10 pounds or something. I decided that I would only do it when I went two weeks without a loss. (So I've only done it once and I went down by 1 point. I'm now at 25.) So, this plan has worked well for me. So here is my chart:

But because of the hypothyroid drugs, it kind of feels like I'm cheating. (Although the barfing of last week's rotavirus did give me a nice nudge! And no, I'm not thinking of becoming bulimic anytime soon.) See that blip at 2/5 where it goes up a few pounds? That was when I was off of Levothyroxine for two weeks. Remember how I had the itchy and scratchy crazies? I went off the generic thyroid medication for two weeks, then went back on Levoxyl, the name brand version. No itchies and I merrily went along losing weight. It all seems too easy. I just more or less follow the plan, which still allows me to eat my new found favorite, Betty Crocker Warm Delights, on occasion, and I lose one or two pounds a week! Off the drug, I gain 2 pounds. It feels like cheating. Man, I love this new found discovery that my thyroid sucks ass. Lucky me!

I'm still not perfectly in compliance with WW. Points-wise, I usually am, but I often don't get 5 servings of fruits and vegetables or two servings of "good" oils. Also, I have yet to get to 28 activity points. So, those are my current little goals I'm trying to improve.

Isn't this boring so far? Well, now it will be more so because I'm going to jot down my current exercise regimen.

• Monday I go to the gym and either take an hour long "Body Flow" class which is aerobics with some yoga thrown in. Or, If I'm late for that class, I do half treadmill and half bike. ( I get bored.) On either, I have to reach 15 minutes, one mile, and 100 calories burned. All of those-before I can get off the damned thing. Hate it. Then I do a bunch of yoga stretches for like 20 minutes. I also give myself credit for walking there and back, which is 20 minutes each way. I can earn up to 7 points like this.
• Tuesday, I try to take the kids for a walk and I do 1/2 hour of abs and barre stuff from old ballet classes I remember. I can usually get two points for this.
• Wednesday, back to the gym for swimming. Sometimes I will take one of the kids swimming with me for the first 1/2 hour. Lifting them around is a lot of strength work in the arms. Then, I do laps. I do a warm up sort of cross country ski-ing lap. Then 4 sets of 4 laps of crawl stroke, backstroke, crawl stroke, kickboard without stopping. I stop for a few seconds between sets. Then another cool down cross country ski lap, then about 15 minutes of stretching in the therapy pool. Add in walking and I can get 7 or 8 points here.
• Thursday is the same as Tuesday.
• Friday, I used to go to the gym, but I just decided recently that that is too much for the kids there. I don't think they get interacted with enough there. I think they are left on their own a lot of the time. It's okay for a bit, but not three mornings a week. Also, I've needed additional time to go work at D's, so I need this morning to go over there.  So, now I've been experimenting with doing videos at home, which is kinda hard for me to do, and Naim HATES it when I do them. Like has a screaming fit. I can get 2-4 points doing videos, but I'm having trouble squeezing them in lately.
• Saturday and Sunday I don't do jack-shit, except sometimes I have to walk to church or to the store, so I count that and might get 1-2 points a day.

So, If I get all this done, I can get at most 22-24 points. I don't see how I will ever get to WW recommended 28, unless I went back to figure skating every day or something, which isn't likely to happen anytime soon. I like working out. I am athletic and built as such and I like being in shape. I like having my body be able to perform like I want it too. I like that I have muscles and strength. I am hugely at risk for diabetes, which is scary for me because I've had so many friends die of it. So I like the fact that I'm eating better and getting healthier.

I like being skinnier as well, of course, even though I still have a ways to go before anyone would call me skinny. But I've gotten significantly less vain in my old age. I saw a commercial recently (for shampoo?) that shows a woman doing a billion career, housework and kid related things and getting progressively less fixed up and made up and fashionable as she went along. It says something like 89% of mothers report that they have "let themselves go." It kind of pisses me off. It's like it is my job to look skinny, sexy, fashionable and attractive all the time, and if I put my priorities elsewhere, than I'm failing as a woman, my number one job being to look attractive for you.

Fuck that. My priorities have changes since my 20's when I was a lot hotter by far than I am now. Then I wanted to be hot. I wanted men to look at me. I wanted all the little perks you get when you are hot like free drinks and great customer service. If I had to pay a billion dollars I didn't have for clothes and spend three hours on defrizzing my hair and putting on make-up...then so be it. Now, I want to be clean, neat and healthy looking. That's it. And I want to do it in as little time as possible with as little effort and money as possible. I just got rid of a bunch of clothes that had holes in them and pretty much bought myself a whole new, very simple wardrobe for under $250. Right down to the underwear. I hadn't bought clothes in probably 6 or 7 years. When I was pg, I bought two pairs of maternity pants and wore all of D's shirts mostly. Since hole-y clothes weren't passing for the neat criteria, I had to break down and buy some new ones. But it was just like whatever will work with the least amount of effort. I don't have time to shop for more or the money either. I wear foundation because it has SPF in it and I should be wearing that anyway for my health requirement, but I usually don't wear other make-up. Too time consuming. My hair? Always usually clean and out of my face, but rarely straight ironed or producted.

Its not that I think hair, and make-up and clothes and stuff are bad. If you want to do it, great. And sometimes I want to do it. Sometimes I will have extra time and do my hair and put on eye shadow and stuff. And someday, when I have more money or more time to shop, I might buy more clothes. I think that there is an art and an aesthetic to it. All cultures self-decorate and preen. This isn't a whole feminist rebellion thing. I think if it is enjoyable or important to someone to spend more time on the extras of their appearance and it is a form of expression for them , then go for it. But I resent having to do it. And I won't if my time/money/effort are drawn to other more important things. Hey, its one of the great perks of being a SAHM. Most days I can be ready to go in 20 minutes.

It's interesting the different ways you get treated when you are young and all hawted up in your 20's vs. walking around in jeans and t-shirt with no make-up and some extra weight on you in your 30's. (And for the record, I was always blind with funny looking eyeballs, so I was NEVER all that hawted up anyway. But did have a halfway decent body in the days of yore, which is all men seem to need to give you extra attention sometimes.) This may sound like I'm one of those fat people that hides behind their weight and who knows, maybe I am, but I like it better this way. I like the anonymity and the just dealing with people without so much of that factored in. Its less anxiety inducing.

But, alas, my neat, clean and healthy criteria do require me to have a decent BMI and be outside the high risk category for diabetes. So WW it is. And I'll keep counting them damn points. I suspect it is going to start getting harder real soon. I'll let you know how its going in about 20 more pounds or so.

Your turn is your turn and my turn is mine/and we use our thank yous all of the time.

Maybe it's because last week was so horrible with all the barfing and the pooping of the liquid, but this week with the kids was really good. I had fun!

Update on all of us sickies: We all had what was most likely rotavirus. I got terribly, horribly barfing, dehydrated sick last Wednesday. I actually called D and said he had to get over and spot me in case I lost consciousness. This was probably an exaggerated fear, I wasn't really in danger of passing out. It's just that the last time I had a really bad stomach flu, which was years ago, I totally passed out on the bathroom floor. The next thing I remember was waking up and seeing the bottom of my then boyfriend's chin and the sky as he was carrying me through the parking lot to the ER. I'm such a sexy date sometimes. This was all probably exacerbated by the fact that I had just gotten out of the hospital a few days earlier with a kidney surgery and a stent holding my ureter open had fallen into my bladder and caused an infection. But since then, every time I throw up I think I'm going to pass out any second of dehydration. I'm weird that way. I make these asinine associations with things that have nothing to do with each other and then can't shake them.

So anyway, D spotted me while I barfed. I was okay within 24 hours, but then he got sick. Aaron was sick on and off throughout the week. D took a few days to get well. I'm telling you all this because of the most amazing thing: After being surrounded by all our puke and whatever else for a week...Naim never got sick. Not even close. He is Amazingly Healthy Superhero Man. That makes me very happy, though, because I don't think I could have handled one more puke mess.

This week it was just me and the kids most of the time all week. And for the first time in weeks, we were all healthy at the same time. We had spent several days stuck in the house together and finally were able to get out. I went back to the gym after missing a week. This gave the kids time away from me and time out of the house. I could really tell that they needed that. They were just happy and fun almost entirely from morning till night. We did lots of stuff, coloring and little games and play-doh and some little sticker workbooks that they like. We "cooked" together. I had them making jello and apple juice (from frozen) and macaroni and cheese and simple stuff like that. I always try to sneak some vegetables in the mac and cheese. And I just put some frozen mixed veggies in this batch--itty, bitty carrots and peas and corn--and wouldn't you know that Aaron ate around every single vegetable. He is still incredibly picky, but Naim has been on an eating spree and eats everything I put in front of him. I think he is growing bigger than Aaron now.

For the first time alone without my dad, I took them for some walks around the neighborhood without the stroller. I guess I have taken them around my block before by myself, but this time we walked to D's house one day and to a playground today. They both hold on to one of my hands. It has worked okay so far. They do a good job.

This may sound weird but walking with them like this reminds me of walking with my guide dog. Part of it is just the constant presence of having a living thing attached to you all the time. That gentle pull on your left hand is just something that gets built into your muscle memory after you do it for eleven years. And the feel of the pattern of their footsteps. I walked about one step for my dog's two, and it is about the same pace with the kids, just slower. And part of it is that we make sure we stop and curbs and stuff, which my guide dog always did. And then pause when we go up the opposite curb. Every once in a while a kid will refuse to go my direction. I use a technique I used with my dog when she would stall around (usually not while working). I would just keep walking and she would get uncomfortable being left behind and catch up after a minute. This makes me a little nervous to do with the kids. My neighborhood has nearly zero traffic during the day and I don't go more than probably 8 feet until they want to catch up. I just stand there and wait and finally they come when they see I'm not going to give in. It is about a billion times harder to get twins to go the same direction or to catch one if they decide to go opposite directions. So just waiting and not turning around and fetch the other one makes the one you've got with you stay on track as well. It is something we are still working on, so we are a long way from going stroller-less in the world outside my little neighborhood. But they did surprisingly well this week. And it was really nice out, so we had some nice walks.

Yesterday, we went to our little art class at the children's museum. On Tuesdays it is clay and "sculpture" and on Thursdays it is painting. It is a drop in class, so my goal is to go a couple of times a month. We have to take the train and get there by ten. The whole thing from my house to the front door of the museum takes about 45 minutes. But everything on public transportation takes that long, so that really isn't bad at all. The class is a bit like a preschool. They have a little circle time, then they have art stations that they rotate through, then they wash hands and go back to the circle for a snack and a book. The book is usually something about art, but I can never hear/see it so I don't know what exactly. Then they go next door and have a little music class. Then I usually let them play in the museum for a half hour or so, and then we head home. It is a nice little day for them, they really like it.

It is a lot of work for me though to supervise them. Parents have to supervise, there is only one staff member present and about 10 kids in art and about 35(!) in music. Let me just say that 45 minutes is an endlessly long time to supervise two kids to paint. Like, and make sure they don't hurl paint trays across the room or what not. I am way more exhausted than them by the end. Aaron can do his own thing, I just need to watch to make sure he doesn't spill something or steal another kid's paintbrush or something. Naim is tougher. He gets freaked out if he gets paint on his hands, his clothes, the floor, the (covered) table. I'm trying to get him to loosen up about it. But I usually end up just letting him clean up as he goes, because that is what makes him happy. He usually lasts about 30 minutes and then I let him wash his hands and play with puzzles in the circle area instead of paint. I'm doing these art classes for Naim, so he can work on his hypersensitivity to texture, and messes. As I've said before, the kid is a wee bit spectrum-y. I still think there is a chance he might grow out of some of this. I hope it doesn't get worse. That is what I'm trying to prevent. The other excellent thing about these classes is the kids make a big mess and I don't have to clean it up! Yea, Children's Museum!

I have to say that I feel really stupid now that I wasted my money on Gymboree classes last year. They were horribly expensive for a 45 minute class, which is why we quit. They don't do anything there that the children's museum doesn't do, and the children's museum does a ton more. A year membership for the kids and I costs $75, compared to I think it was over a hundred dollars per kid for just ten 45 minute classes at Gymboree. And Gymboree had this crazy-ass rule about not letting me (anyone) supervise both their children at once. You had to either bring an extra person, or take the family class which was geared to kids 6 months to 5 years. Chaotic. The museum art classes cost a whole $2.50 per kid at a drop-in rate. Plus the music class is free, plus all the other stuff they have there (plays, puppet shows, tons of different play areas, and the best part--a big train set!). You do end up seeing some of the same moms and kids there, too. So there are some chances to make connections. Gymboree didn't make it that easy to talk to other moms because the teacher was always screaming at hyper pitches. Anyway, this is all to say that I think Gymboree is kind of a crock. And that the kids and I are having fun in their art classes.

What else? When I was working in Child Life, I made some connections at Boys Town Hospital in Omaha. (I went to high school across the street from Boys Town and we had a lot of boys town kids in my classes, so this is actually a way back school connection.) Anyhoo, She sent me a bunch of DVDs made by Boys Town institute that are ASL-ed classic children's books. Cool, cool. This guy signs the story and then shows the illustration of each page. The guy is a character. He has one of those mustaches that probably has another name but I call it a "Colonel Mustard" stache. It like winds around his cheeks like a beard but his chin is shaved. Anyway, Naim is just freaked out fascinated by this guy. He goes back and forth from panic to wonder at him. Sometimes he stands in front of the TV and just starts signing like crazy with his whole body. He isn't really signing anything, he is just pretending to, but it is hilarious. Other times, he covers his eyes when the guy signs and then uncovers them when they show the picture. He really likes an Eric Carle one about a chameleon.

I have a whole 'nother post in my head about the kids and socialization and their status as sorta KODAs (Kid of Deaf Adult) and what that might mean for them. But I have to save that for another time. But I really think they need to be around more signers. I would love to find a KODA group for them where they could be around kids who sign, or even a group of deaf kids with hearing parents--but so far, no can find besides a few camps. We probably will take a class next year with the homeschooling coop called beginning sign. They will probably know most of the vocab already, but at least they will be around other signers besides mom and Rachel from Signing Time, who they also call mom. Now we have Colonel Mustard, so that's good, too. They are starting to see that the rest of the world doesn't sign. I really want them to know some signers.

Speaking of Rachel from signing time, if I ever meet her, I'm going to thank her for helping us figure out this your turn/my turn business. This whole taking turns business is finally starting to sink in to their heads. Its one of those things that you wear yourself out talking about and think they will never get and then finally they do. I'm not saying they always take turns, by god no-not in a million years. But they know what I mean when I say it. And they know how to do it. Signing Time has a song about Please/Thank you/Share/Your turn/My turn and all the corresponding signs. They love this song and they love the your turn/my turn signs. Sometimes we just play a game where we take turns doing the sign for taking turns. All kinds of fun. And Naim says and signs thank you all day long whenever I hand him anything. I know he doesn't quite get it because he also tells me thank you when he hands me stuff. But it is really cute.

One last cutie thing I want to remember. When Naim puts his pants on in the morning, we have started to have to do this whole elaborate farewell to his knees. Naim has a very special relationship to his knees. He used to be in love with his elbows. In fact, I have several pictures of Naim's elbows that he made me take. But elbows recently gave way to knees. And we have to say, "Bye knee! Bye bye, other knee!" when we are pulling up his pants. And then we have to kiss them. He does and I do and sometimes even Ernie and Elmo do, too. And then, what a joy it is at bedtime when he gets reunited with his knees. There is lots of kissing and hugging there as well. Hey, they are really cute knees, I must admit.

Oh, now I don't feel like I've written enough about Aaron. Must always keep it equal! Aaron is just verbal word boy. He repeats everything I say with near perfect enunciation and learns words faster than I can keep track. We have little conversations all the time where he tells me stuff. I was so excited the other day because he is actually starting to tell me stuff that happened at daycare. I asked him what he played the other day, and he said something I didn't understand which sounded like Hi-EEK. I didn't get it at first so he goes over to the corner, plants himself against the wall, counts to ten, and then says perfectly, "Ready! Not! Here I Come!" Oh! Hide and Seek! We never played that, at least not the ready-or-not part. So he actually understood that I was asking him about daycare and told me what he did. Whoo hoo, what fun.

Okay, that's it. Just thought I'd tell ya that parenting is fun!

Can Anyone Help?

I'm reprinting the following that was sent to me by a disability advocate. Essentially, a friend of his who has significant disabilities was diagnosed with cancer. He was chosen to be on a team that would represent his friend and to make medical decisions. He states that he was not allowed to obtain the health file or other information about his friend's cancer. In the end, agency and medical higher ups seem to forego the consideration of any treatment options and put the patient immediately in hospice. Furthermore, he suspects that euthanasia occured through use of pain medications without the patient's consent. The story is long and sordid and I'm not sure what, if anything, can be done to shed light on this problem. I hear stories like these all the time. I thought the very least I could do was reprint it for him. If you do have some ideas or ways to help him, let me know and I will connect you to him.

This is a true story that must be told. There are people who have gone to great lengths to suppress the information herein. What I hope to do is compel those reading it to join with me in demanding accountability from the responsible parties. An investigation independent of Oregon’s Protection and Advocacy agency is needed to decide exactly who the responsible parties are.

In early April 2006 I found out that a close friend of mine had stage 3 colon cancer. She had a profound developmental disability and was non-verbal. In order for critical health care decisions to be made on her behalf, she needed representatives who knew and cared about her to gather and interpret medical information and weigh all her options. An Advocacy Team was assembled including myself, two other staff members from her day program (who knew her well), and her Individual Service Plan (ISP) team. This consisted of a management staff representative of the day program provider (who saw her a few times a year), the owner of her foster home (who supervised her direct caregiver) and a county case manager (who was assigned my friend a few months earlier, and didn’t know her). A close friend of the day program representative was brought on board to act as health care representative (who didn’t know my friend prior to her diagnosis). We all met and decided that the case manager would look into what was covered under her health plan, the health care representative would get the medical record and a 2nd opinion. She committed to providing these documents to the team as soon as she got them. I said that I would look into treatment options. Without any of this being accomplished, other than the information I shared about diet and exercise being critical, she was placed in hospice about two weeks later.

Following that initial meeting where I and another Advocacy Team member voiced our opinion that treatment should likely occur, our participation in decision making was apparently no longer desired.  Decisions were made without our input and we felt we were being regarded as tokens.  Instead, I joined her ISP team as her friend and advocate with no objection from any other ISP team member, and acknowledgement that it was appropriate for me to fill this role. From the beginning I insisted that in order to responsibly represent my friend in making decisions about her health care, we needed to see the medical record, the 2nd opinion, and make sure we all knew what her options were. The rest of the ISP team was more interested in allowing her to die without any medical “interference.” In fact, in early June, without access to any medical record, I was asked by the day program representative to sign a form that would indicate that I agreed to refusing treatment – I declined. 

I complained of medical neglect for months while my friend received no treatment. While I was researching diet and exercise, part of the team enrolled her in hospice and cancelled her home health aide; the case manager claimed she had no idea how that happened. While I was complaining of a service plan that didn’t address supports for her condition, the case manager scheduled a meeting to discuss a burial plan. While I complained of a team making decisions without having the medical record to look at, the Health Care Representative took a 10 day vacation to Greece, and the case manager took no action to get the medical record while she was gone. I had already contacted the Protection and Advocacy agency, but received no assistance from them in getting the medical record, even though I had alleged medical neglect. They could and should have gotten the medical record themselves by that time.

A consultation meeting with hospice that involved the entire ISP team only occurred after she had been enrolled in hospice for 2 weeks. This is supposed to happen before making the decision to elect hospice care. This “consultation” consisted of meeting with a hospice social worker and nurse who used what seemed to me like fear tactics to sell their services, including talking about going to a hospital as the indignity of being “loaded” and “hauled off” to an unfeeling and strange place that makes you “wait for hours” for care.

It was obvious that the ISP team would do anything to get me out of the picture and have my friend quietly fade away. My advocacy was characterized by the case manager’s supervisor as “disruptive” and “ancillary” to what the ISP team was doing (damn right), and he began trying to have me removed from my friend’s team. This is in violation of the Oregon Administrative Rule that says that the team can’t be changed when critical health care decisions are being made. He even went to the extent of trying to deceive the Protection and Advocacy agency and keep them out of the loop by changing their email address so they wouldn’t get the cc of his letter calling to remove me.  I filed a grievance with the county developmental disabilities program manager. She declined to communicate with me except through the county’s lawyer. I began to receive letters on official county lawyer letterhead. I asked for my friend’s grievance to be heard by a grievance committee, which is provided for in the state’s administrative rules. I was told that only the program manager and her lawyer would talk to me and the meeting would take place in the county lawyer’s office.

At the end of July my friend was taken off hospice but still received no treatment. The reason given for this move was that she wasn’t eligible for hospice because she wasn’t homebound. The fact is, she had been attending her day program 5 days a week and taking the public lift to get there since a week after hospice had begun.

Finally, in early August, the medical record was made available by the Healthcare Rep.  This was 4 months after her diagnosis and refusal of treatment by the other ISP team members. No 2nd opinion was included. What the Health Care Representative had been calling a 2^nd opinion was an oncology consultation from a second doctor during the same hospital visit.  I believe that no 2^nd opinion was ever done. The doctor said that chemotherapy is the usual course of treatment and there were concerns about her communication and side effects. I discovered that the case manager and the day program representative had a meeting at the hospital with a social worker and decided then that she was incapable of chemotherapy. At the initial meeting back in early April, this was presented as a fact given to them by the doctors.  I found that a hospice consultation was given, along with an in inaccurate reference to her being bed-bound and an opinion about her quality of life and disposition. There was no prognosis of 6 months as they had claimed.  I also discovered that she had symptoms involving her intake and weight loss fifteen months earlier. In March an endoscopy had been recommended but wasn’t done.

A nurse from the Department of Human Services was assigned to the case and conversations about guardianship started. I complained to the Protection and Advocacy agency that the team was pursuing an inappropriate guardianship (I feared this was in order to put a “do not resuscitate” order in place). I never heard from the Protection and Advocacy agency what happened around the guardianship. I do know that when my wife went to the ARC to get information about pursuing guardianship ourselves, the ARC called the county developmental disabilities office and told them she had been there. 

I had also called protective services to report possible medical neglect, but was told they wouldn’t investigate as long as the Protection and Advocacy agency was already involved.  I now feel that the one regrettable mistake I made through this whole thing was in contacting the Protection and Advocacy agency, believing that she needed a lawyer. They never gave a clear answer as to whether or not they would even represent her.  In the face of reams of evidence forwarded their way, the P&A did nothing that I am aware of. A well-documented trail of deceit, betrayal, delay and cover up of information continued until I finally left the ISP team, disgusted, in September.

She continued in her day program until late November, when it was announced that the cancer had spread and she was back in hospice. At 10:00 A.M. PST on December 14, 2006 my friend gave in to “pain killers” prescribed while she was on hospice care. I believe my friend was euthanized. I believe this was because she was unable to say “yes” or “no”. She was someone with a huge spirit and a small body. She was someone with a quiet demeanor and a profound developmental disability. In life she was easy to overlook, but the way she died will not be.

On January 10, I submitted a grievance with the P&A regarding their handling of my friend’s case.  After not hearing from the executive director in 15 working days, I sent the grievance on to the board’s grievance committee.  After not hearing from them after 30 days, I can only assume that my friend’s death and her life don’t merit their attention.

If you are wondering whether I can back up my claims here, the answer is YES. I have documentation that supports this true story and will share it selectively. What I am looking for in sending this out is feedback, advice, and legal assistance to ensure my friend’s death was not in vain. I also need help in getting as much exposure to this story as possible.

Appropo to Nothing...I Go Off On Some Garble-ly Gook About Truthiness

I've been pondering a little philosophical exercise today about truth and honesty. I promise this post is not about my in-laws! But it is something my in-laws have said to me a few times in the past during our problems and D just mentioned it again to me the other day. It is something to the effect that I am too honest, or that I somehow "get off" on honesty, or that I put being honest/or otherwise what I would consider "right" on a higher priority than relationships.

Since it is an honest criticism of me, and I try to see what I can take and grow from that. But the whole thing just confuses me. And maybe I am just incredibly dense. I mean be critical of my tact, of my diplomacy, of my patience, of my timing--all of which well and truly suck at times. But I don't get the whole being honest as a means to jeopardize the relationship thing. How can being honest be mutually exclusive from caring about relationships? How can you actually choose one over the other like a multiple choice test? For starters, lets be clear here. I am not totally honest. I lie like the rest 'uv ya. Little white lies or lies of omission to spare feelings. Lies of laziness so I don't have to explain myself. When I was younger, I could tell real whoppers just to have something interesting to say. But probably because of that, and the times I got caught on it, I have really been uber-sensitive to being honest. To me, honesty and truth are the goals we want to achieve. Truth isn't only a tool to get to a healthy relationship, truth equals love. When you open yourself up for someone to see the whole, real you...and you, them...you allow them to love you in your entirety...and you, them.

Is there ever a circumstance when truth is not the goal? In any facet of life? I don't know. I'm pondering...

Of course there is the example of your friend, about to go on a date, who is excited about her new dress which you hate. She asks you if you like her dress. If you know her well, you may know that what she is really saying is, "I'm so excited about this date and this dress and I want to share it with you!" Or, "I'm nervous and I need you to boost my confidence!" She's probably not really asking whether you like the dress. Why is your opinion of her dress even that relevant? You can either give her what she really wants: Shared excitement or a confidence boost, "You look so excited and happy that you just shine with beauty!" "You always look beautiful when you wear something that shows your own personal style." You can even be honest, "Well, that dress wouldn't work for me but I'm glad you like it!" Or, maybe, if you've really cut through the crap and you're really close, you are lucky enough to understand that each of you have entirely different tastes and you will joke to each other about it: "Oh, you know how I LUV when you dress up in pink ruffles! You look like a dime store bridesmaid-turned-ho!" (When you get to that level of friendship, isn't that just the best?) And because you have an honest relationship, you may also know when she really, really values your opinion on the ACTUAL dress itself. Like she is getting ready for a job interview and How do I look? really means How do I look? Be brutally honest because I don't want to screw up this interview and I need your input. Honesty is the only way to get to these places in a friendship. Otherwise, you may hang out, but you sorta reach a stagnancy at some point. We all have these, I think they are called long-term aquintances.

There is a book called Radical Honesty by Brad Blanton that explains how being honest (I don't get the Radical part, I guess it just means, not even a little white lie) can help you to have more meaningful relationships, better life management and organizations, better success in career, etc. They did a story on it awhile back on 20/20. They showed how being honest improved people's lives. But then, and this cracked me up, Barbara Walters said in the epilogue, something like, "Don't try this at home without a trained professional." So, we are so dishonest now that we need a trained psychologist to monitor our having honest relationships? Of course, the book talks extensively about tact and diplomacy (so I should probably go read it!) but the tone of the 20/20 spot was just that this was such a totally way-out there and novel idea. But do you ever imagine what it would be like if we couldn't lie? Like if we lived on Betazoid or something and we were all empathic? And how much that would fundamentally change our society? Hmmm...

A harder one: A death bed confession. Do you tell your dying wife that you cheated on her? Hmmm. I don't know. But I have to open my mind up to the possibility of forgiveness. Maybe the wife always suspected or knew. Maybe she's been waiting for you to fess up to her so you guys can clear your baggage. Maybe the perspective of dying makes the cheating small and not important anymore so even in the last few minutes, the relationship would grow stronger with the honesty and the understanding that in this life, we all screw up. The answer here may be entirely situational. But I can't say that categorically honesty wouldn't be the best way to go.

Truth, of course, is relative. My truth may not be your truth. My truth right now may be different than my truth five years ago. It is a moving and changing thing. It is fluid and only remains a truth in the very instant that it exists. Even scientific facts are not really facts. They are only facts until they are proven not to be any more. My favorite is when people say something like: Fact--38% of all Americans ate french fries yesterday or something like that. Statistics are the most fluid facts of them all. They are only true to the specific subjects in the specific study and are vulnerable to the specific scientists interpretations and scientific model. I'm not saying they are useless, they are little snapshots of truth. But they are not facts. Truth is the best we can do right now. Truth is what we know to be this instant until we know more, better, or differently.

I dare say, and I don't know if it is true (heh), that seeking truth may be the meaning of life. The highest calling. The honor we strive for. The constant searching and peeling back of the layers and observing and experimenting and seeking out, is all to find truth. And then when our time runs out, to pass the torch of light to others so they may continue to seek truth and build on what we've found.

One of the things that appeals to me about Unitarian Universalism, is the very high and almost "holy" value and priority they put on truth. And the recognition that none of us know it, and we are all taking entirely different paths in our search for it. And that we will never get there in this lifetime, but the pursuit is still worth it. The searching out to find it leads us to beauty. Beauty in the earth and in each other and in our society and the universe. And that there is beauty and wonder in the unknown. How lucky we are that we don't know everything so we can imagine all the possibilities? Truth is beauty, as they say.

And truth is also change. Which means that truth hurts and then it heals. Because change is always about death and rebirth. And it is when you find that your old truths aren't working and a new truth is what is real for you, that you know you need to change. Which sometimes sucks. One thing about truth is that once you have found a little piece of it, you cannot go back to the lie.

I think about times in my life when I found a new truth and it meant I had to change. I could not live within the lie anymore. My very earliest memory of this was when I bugged my babysitter to death quoting commercials verbatim and telling her she bought the wrong laundry soap. She finally said to me, "Lisa, commercials lie, ok? Don't believe commercials." I was probably like 5, and I had no idea that what I saw adults telling me on the TV wasn't true. So, then, I became a commercial skeptic. And had to think of the world differently in a way. It was my first real truth I learned about a market economy, and more significantly, that adults lie.

And then there was the stuff you learn in college which completely contradicts everything you learned in high school civics and history. Columbus was a genocidal, slave-trading asshole. Wars are fought many times primarily to keep the military industrial complex in the black. That kind of stuff. I didn't really clue in to media bias that much until the early 9/11 coverage when some channels broadcasted the BBC or other international news and I saw how different their takes were on the attacks and why the U.S. was targeted. This truth made me not ever be able to watch a story on CNN again without checking ten other sources as well.

There are the truths you learn about oppression and social injustices. Every thing from watching the miniseries "Roots" and "The Holocaust" when I was like 7 years old, to my current obsession with the patriarchy since having given birth to boys that I highly desire to figure out how to raise not to be pigs.  You can't go back after you've learned the truth. You can't go back and think that humans don't chain other humans on stacks and stacks of ship decks to sell. You can't go back to a more innocent time. Someday I will have to teach my children about the generations of ways men have overpowered and dehumanized women and my little sweet innocent boys will know that this is possible. That humans can cross that line and go to that evil place. And then I will have to hope that they find their own truth without ever crossing those lines and going to those places.

Truth hurts, but it heals as well. I remember a time when I found out that I was a minority in my own family. And that they had conditioned disdain for people like me. (For we are all victims of institutional oppression, even the so-called oppressors.) It was in blind rehab. And I had this moment of clarity when I found that some of the ways my parents treated me were because of their fear and disdain for blindness and disability. And I understood this fear, because I had it, too. And I learned that the fear about blindness is not in being blind itself, which is very survivable-if not a pain in the ass-but how you will lose your place in society and be outcasted and marginalized.

What shocked me most is that the truth was that society was lying. Being blind wasn't in and of itself a bad thing. Neither is being black or gay or female or poor. The truth I found was that the caste-ing of all of us was the big lie. And that these lies were so pervasive, that even a mother's love couldn't circumvent past them sometimes. Families were being ripped apart by disability shame, gay shame, interracial marriage shame, whatever. A mother's love couldn't see through the lie? Society's lie was that powerful? Once you see the truth in that, you can't go back. But then, time after time, I saw mothers find out their kids were disabled or their sons and daughters were gay, and I saw them push themselves so hard to find a new truth, and to move past the lies that society has told them. And once they did that and learned everything they could learn and reteach themselves new ways of thinking, they turned around to the truth right in front of them that was always there. Their child, shining out beyond the lies. Truth is love.

The only thing you can do when you are immersed in these huge institutionalized lies is try to vigilantly shed some light on it so  that yourself and other people see it for the lie that it is. This has been one of my main passions for the last decade or so. To try to search for the truths in what society has lied to itself about. Its ugly. And some people want the truth to remain hidden from them. They don't want to know. They don't want to have to go through the gateway of truth and never be able to come back to the realm of delusional innocence. We all live somewhere in the realm between delusion and truth. Some people try to forge ahead and much as possible and some try, kicking and screaming, to stay as far away as they can from finding out something that may make them have to change.

The truth hurts, and it heals. The truth is change. When you are blind and suddenly you find out that you'll do just fine as a blind woman, but also that suddenly most people won't think you are worth a shit... YOU will know. You will know that you are the same person. That you have inherent self worth. That you are not the person society's lie will have you to be. You won't have to believe the press about people like you, because you will know the truth. Maya Angelou knew why the caged bird sang, blind people know that they are able to "walk alone while marching together." The truth heals.

But sometimes I see other disabled people who still believe that they are worthless, that hate themselves for not being what others want them to be. They believe the lie that they are a deficit and not "whole" or maybe even better off dead. And I see battered women and children who won't leave their abuser because they think they deserve it. Or young black men and women who think that they are the image of the thug or ho that they see on TV. And I see a woman with holes in her clothes get off the bus that was 20 minutes late and go into the WIC office only to be told she missed her appointment and she can't get her vouchers this month, and I see her think that she deserves this. And I see white people, who think it is okay to go on not knowing or understanding what is happening to their neighbors. And I have to try to be be honest with them, if I can, with what truth I see. They may see something different. And together, we may find something deeper in the truth. Truth is change. But you can't not see things once you see things. And you can't not try to do at least a little something about it if you can. It isn't me that is the pain in the ass, it isn't the truth either, the truth will set you free. It is the lie that is the pain in the ass. It's the lie's fault that it's so hard, not the seeker of the truth.

So, yes, speaking the truth means more to me than the relationship. If it is even possible to make that statement. Because speaking the truth IS the relationship. There is no relationship without honesty. Truth is love. My truth may not be your truth, and if they clash, we have to work together to find out what the lies are and where our honesty lies together. If someone isn't ready to face the truth, then perhaps we go our separate ways for a while, and come back later...or not. I live, as we all do, somewhere between truth and delusion, but I'm going this way with all my energy and spirit and power. And I'd love to travel with as many people who want to come along for the journey. Truth is love, and I'm reaching towards the light.

He who seeks the truth and trembles
     At the dangers he must brave,
Is not fit to be a freeman -
     He at best is but a slave.

Be thou like the first apostle,
     Be thou like heroic Paul;
If a free thought seeks expression,
     Speak it boldly, speak it all.

Face thine enemies, thine accusers,
     Scorn the prison, the rack, the rod;
And, if thou hast truth to utter,
     Speak, and leave the rest to God.

Me and My Shadows

Heather Armstrong writes the most lovely "monthly newsletters" to her daughter, Leta. It was actually, in part, the inspiration for the whole "Letter to My Children" thing. I'm sure she has them saved in some beautiful scrapbook that her daughter will cherish forever. I wish I could write like that. But I haven't had the discipline or the talent to pull something together like that. I get bogged down writing about crazy family relations and maddening politics or trying to respond to emails about diapers or disabilities on this site sometimes. I don't even think I've written about the kids in a while. I still have kids! I still treasure just the plain ol' mommy thing!

Its ironic that I'm inspired to do this today, because I've just spent the last three days getting barfed on. And previous to that, two weeks of getting snotted on. And previous to that, weeks and weeks of getting diarrhea-ed on. Yes, it has been a tough winter for Aaron. Naim is just fine, of course. He has an endocrine system of steel, apparently. But Aaron has always struggled with his health as I do. Of all the things I could have passed down to him...blindness, deafness, kidney disease...I seem to have passed down to him my lousy immune system. It is actually the one thing that probably gives me the most struggle day to day. Both Aaron and I have to fight for the good healthy days. I'm hoping he grows out of it.

Today I had to drag everyone to three doctors appointments. Thankfully, D came along to help. But we are quite a crew trying to get all of us, wheelchair, double stroller, kids and me, around a hospital. It's not so bad in the pediatricians office, where everybody's kids are making a lot of noise, but it is kind of funny to walk into a quiet and somber nephrologist's 6X10 stark waiting room with the whole crew making a racket. Everyone looks up and stares. Some are disturbed, others are delighted for the break in the boredom.

Aaron and I went to the pediatrician about the barfing, while Naim and D stayed out in the waiting room. It had gone on for almost 48 hours, and although he was drinking and keeping some fluids down, he had eaten nothing in that time. And I had had it with the cleaning of the without-warning projectile vomiting. Kids this age are funny when they barf. They don't expect it or have any control over it. Adults will feel it coming on and try to hold out until they can rush to the bathroom. Kids will just be walking along, minding their own business, and suddenly their breakfast shoots out three feet in front of them, and then they keep walking. Ugh. I ran out of pants today because all of mine had been barfed on. So, the verdict was no surprise: stomach virus. Suppositories and pedialyte. Wait for the runny poop, and then it will be over. Pray Naim doesn't get it. (Aren't you glad you're reading this post? I hope you're not eating breakfast as you read. --Sorry.)

When I came out, D had a bunch of women around him and Naim. They were all cooing and giving Naim suckers and toys and stuff. I notice this with my dad, too. When I leave my kids alone with men, its like a chick magnet. Wouldn't it be cool if guys would come running to help me when I'm struggling to shove my double stroller through a doorway or pay for groceries with an irritable kid on my hip and another one whose stapled himself between my legs? Heh. Women alone with kids is like dude kryptonite.

So then, over to the hospital and to the audiologist to drop of my FM mike that is broken for the 80th time this year. We stopped at a cafeteria and tried to feed Naim actual food while only allowing Aaron juice. Very hard. I did have to give him a small piece of D's peanut butter cookie. And then I watched while he fought off trying to barf it across the table. He did good though. No barfing for the whole afternoon. Then off to the nephrologist to get my kidneys checked. Again, D stayed out with Naim and Aaron came with me. The doctor had me get on the scale while I was holding Aaron. he didn't even care. I said, "You know you have to subtract like 27 pounds from that, right?" He whatevered and walked off. So next time he'll probably freak out because I've lost 30 pounds in a week. B/P, squish on my legs, squish on my kidneys, pee in a cup (While Aaron smashed himself beside me) and out the door. In the waiting room, D is surrounded by the receptionists giving Naim their little desk toys to play with.

Up to the lab for blood work (while still holding Aaron) and to collect my jug to pee in for 24 hours. Then to Walgreen's for pedialyte and suppositories (with Aaron) and home with two cranky kids that missed their nap. But then I was able to fake 'em out and put them to bed an hour early. And no barf as of now. So we might have turned a corner. In total, I held Aaron almost continuously while traveling all around a medical center for 6 hours. He's only this clingy when he's sick. Which lately has been a lot. Aaron held a toy train in his hand for 6 hours as well. I used to not let them take toys with them into places because I thought they would lose them. Not Aaron, you couldn't pry his selected toy out of his hand. He likes to have something to hold on to. My only exception is that I will not let them take toys into the daycare or church nursery, because it just causes problems with the other kids who want to play with it.

I'm writing all this detail down about today, because someday I will have forgotten the fact that I had to take my kids with me EVERYWHERE. I know there are other parents out there in my situation, but many people have far more backup, babysitters, relay people, whatever than I do. Even when my kid is barfing sick, the poor guy has to be drug to my kidney doctor. They put up with a lot. We walk in all kinds of weather, we wait for all kinds of public transportation. Even today, D gave me a ride, but we just parked once and just walked from building to building on this medical campus. They walk up to the ATM with me, they do all my shopping with me, they get dragged to church meetings with me. I can't think of an errand or place I've been in the last six months or longer that I've done without the kids. They are my constant appendage. And they have to put up with me all the time, every day, all day long at home as well. And most of the time, they really do a good job. But sometimes I worry that they get too much of mom and not enough of other people.

But we have had a lot of visitors the last few weeks. My dad has been here for two months and just left last week. (That went extremely well-- by the way.) Although he refuses to babysit, he is someone else to interact with. He will occasionally watch them downstairs while I'm upstairs. My sister FINALLY came and met my kids. And the best thing about that is that now D or I don't have to answer his snotty-ass relatives that passive-aggressive to us about why it is that my sister hasn't met my kids yet. There has been first contact! It was only two days, and the first day Aaron, of course, was really sick and clingy. But the second day was much better. My sister can be kind of standoffish sometimes, but if you can knock that out of her, she can be a lot of fun. So, by the second day, she was interacting with the kids and they were having fun with her. It is a bit of a breakthrough. I think now she will be more comfortable having a relationship with them. Maybe next time will be a longer visit.

I've bitched a lot about D's relatives as a collective lot, but it really isn't fair to do that. I do it mainly to sort of be vague and not single anyone out. But it really is only a couple of people who do the full on judgmental passive-aggressive hate thing. D actually has a lot of cool relatives that I've met. Two of them are his sister, V, and his brother, Q. I love 'em both. They are both so much fun and easy going and relaxed. They don't take themselves or D and I too seriously. They are more perceptive than judgmental. They are fun for the kids to be around and have always just accepted the kids as family. The only bad thing is that they both live several hours away.

They both came up to visit D's mother, who recently had surgery. And they came over and visited us, too. Q had both kids in stitches the whole time. Q shaves his head, and plays this game with Naim to look for where his hair went. It's cute, Naim looks all around, under rugs and chairs, saying "Where Hair Go?" He's really good with kids in that fun way. I always liked seeing Q with kids. Once at KU, I was taking a group of about 8 kids on a field trip to a natural history museum on campus and I ran into Q with this whole line of kids behind me. Q got down on kid level and introduced himself to every one of them, shook their hand, and asked them their name. He just meets people where they are.

He was only up for a day, but V visited several times. And then she did the most amazing thing. She and D were going to go shopping at a mall, and she offered to take the kids with them. Like without me. Like, thus leaving me in the house alone for 5 hours. Alone. In my own house. You don't even realize what a miracle this was. I have literally not been in my house alone for more than 15 minutes for over two years. Not once. I didn't even know what to do with myself. I went to the mailbox, alone. And then realized that I could take a walk. Alone. Without pushing a stroller. Without the whole cumbersome deal that is to do when you can't see well. So I took a walk by myself for the first time in two years. I felt like Julie Andrews at the top of the Mountain at the Austrian/Switzerland border. If my neighbors wouldn't have tried to commit me, I would have ran spinning down the street, singing and arms flailing.

And when my kids came back, they were happy and diapered and fed and had new gifts to play with and a new outfit for each and were happy as could be. They definitely needed a break from me as well. And they had missed their nap as well that day, so they were in bed early. It was a really nice break. Aunt V ROCKS!

I know that next year when we start the preschool co-op they will meet other adults as well. Three is a bit of a breakthrough age for getting out in the world. They are old enough to do a lot more things. They will be talking more and potty trained (we hope) so other people are more willing to take them. I don't know if D will be able to take them alone next year or not. But he will at some point, and so will my dad. So I know it won't be like this forever. I know they won't be glued to me 24 hours a day for the rest of their lives.

The funny thing is that even though I know I need the breaks, I'm sad about that. I will miss having them with me 24/7. One thing that was weird when my guide dog died, was that I was no longer part of this unit anymore. I'm not comparing my kids to a guide dog, but we are a unit. People are used to seeing us together. I'm used to having a sick Aaron attached to me like a koala bear for six hours while he holds his train in one hand and pats me on the back with the other and tries not to barf on me. I'll miss Naim's little check-ins. He goes off and does his own thing, as long as he is within visual range of me and still comes over and checks on me every few minutes. He leans against me with his hand on my leg as he looks out into the world, like, mom--I just need a breather for a minute while I contemplate what to tackle next in the big world, and you are my home base. I'll miss that time after they wake up from naps and want to be held. One on my lap, curled up under my chin, another sitting next to me in the crook of my arm. I get impatient because I have to go cook dinner and they won't let me up. But then I think, at some point, they aren't even going to be here for dinner. Just shut up and savor the moment.

I sometimes wish it could be spread out more evenly. Like I could get more breaks now, but then when they are teenagers, they would want to spend time with me more than teenagers usually want to with their parents. But it just doesn't work that way, so even though I'm very rarely more than 50 feet from my kids now and sometimes want to jump out of my skin to escape, I'm trying to just appreciate every minute of it. Even when it includes being barfed on.

Cecily? Are You Out There? This is a Post Where I Admit I Might Be Wrong!

Fifty thousand people told me to watch or asked if I had watched the Oprah Special the other night about her South African School for Girls. I did watch it, because you all made me. Okay, first of all, does Oprah have to repeat every sentence someone says (including her own) twice? I haven't watched her in a long while. Did she always do that? I was about to slap her repeatedly. I use close captioning and it does confusing, weird stuff to the close captioning when she repeats everything twice. I was like, whose talking now? Who said that? Anyway.

Not only because of that show, and not only because many of you beat me profusely when I recently criticized Oprah's school as being too extravagant, and not only because I've done my own independent research since that post: all together I've come to a different conclusion about Oprah and this school. It isn't so much that I was wrong in stating my opinion. It is actually still my opinion that if I had the means that Oprah does, I would have opened as many modest but quality schools as I could to get the most students possible in them. But I can see where Oprah is coming from better now. I think we are taking two valid approaches to meet the same goal.

I had a boss once--she was actually a boss of a boss of a boss--who really got on my nerves in a similar regard that Oprah does sometimes. This woman was brilliant, and disabled, and--in private--quite radical in her thinking about disability oppression and civil rights. But then in public, she schmoozed, and made big compromises with "the enemy" and did little creative accounting things to get money from different sources to do what she wanted it to do while telling them it was for something a bit different. I admired her, but her public persona seemed hypocritical to me and sometimes literally made me want to puke. Once, she was at a press conference with President Bush (no, I was not there). He was announcing some lame-pansyass-compromise-for-the-sake-of-extinction-throw-the-annoying-disabled-people an-itty-bitty-bone type policy change for homebound Medicare recipients. He announced it like it was some big, huge major thing he was doing for all disabled people and like the original problem was solved. (The original problem is that many Medicare recipients considered "homebound" were virtually kept prisoners in their homes in order to receive in-home services. Thus, leaving people the choice to either go to a nursing home, or stay inside their homes at all times except for doctors appointments. Even people who got caught going to funerals lost their "homebound" status and their care sometimes. His new, great and wonderful policy was that now homebound people can go to religious events and a few other little things that he laid out. Like now they could go get a haircut once every 3 months or something stupid like that.) So this whole thing really pissed me off, right? Well, my colleague provided for this event a group of disabled youth leaders to stand behind the president and smile and clap during the press conference like some kind of lovely politically correct prop. I became nauseated about the whole thing.

But, her rationale was that in doing so, she and several other disabled people got face time with the President of the United States. Like he ever--on his own--would bother to ever have a conversation with actual disabled people about actual stuff. I guess some of the people actually were homebound and had to get special permission to go. This was my colleague's version of direct action to make a point. She would say that if you rant and rave like I do, you will never get your foot in the door with the elite unless you can play the game. She was very good at playing the game and was very good at being able to look at itty, bitty baby steps as successes. I am admittedly god awful at playing the game. And I hate little baby steps masked as big victories. I don't want someone telling us when we can get fucking haircuts, I want freedom! NOW! But I see her point.

So, I can see now that this may be where Oprah is coming from with this school. You could have these girls with their amazing talent and leadership and academic skills sitting in an average (by U.S. standards) school. And although that might be very helpful to them, it is probably not likely going to get them into elite society and give them the power to make positive change at the government/policy level. At her school, they are rubbing shoulders with Sidney Portier and Spike Lee and Diane Sawyer and various aristocrats, senators, political leaders...and Mandela himself for heaven's sakes. Maybe Oprah is like my boss. Maybe she luvs up to John Travolta (who always strikes me as an egotistical materialistic pompous ass) and caters to all of his big spending like she is all into that, and in private talks about what a pompous ass he is. But she's playing him because he has money and influence and power and she can touch a conscience in there somewhere and make him give lots of money to her causes. I'm just projecting this, here. I have no evidence to support this. But I'm trying to look at her from different angles and give her the benefit of the doubt. This is just one scenerio, but possibly that is the way she is playing it. And like my boss, she is a great player of the game. If she lived in a modest house and gave all her money to charity rather than her million dollar houses and birthday parties, would these elites feel comfortable associating with her? Probably not. She would expose them for what they really are and then they would shut her out.

My SIL, the one who hates me but who I actually have always liked because she is smarter with me than she ever lets on in public, said something interesting to me once about O. She said that if Oprah cut out her fluff shows, then people like [insert shallow nitwit here] would never watch the more compelling shows that she does try to do. I'll buy that. Maybe what she is trying to do is to bridge these two worlds. The oppressed, the world she knows because she's been there, and the elite--who hold so much power but can so easily insolate themselves from anyone else's needs but their own.

So Oprah, who has X amount of god knows how much money, undoubtedly still can't educate all the girls in Africa. So, there are always going to be kids left behind, at least in her lifetime. And where do you stop and say I can't do anymore? Say she gets most of the girls in South Africa. Well, what about Zimbabwe? If she gets all of the sub-saharas, what about the Sudan? It is much like when adoptive parents go to orphanages and adopt a child. Yes, you just want to adopt all of them, but you can't. So you have to limit yourself and do the best you can with the resources you've got. So, Oprah is going to give these girls a world class ticket into the elite. That is what this is about. I don't know how much this has to do with academic superiority of the school itself, although I'm sure it is quite high in quality. These girls are going to be pushed not so much by the school itself, but by the Oprah connections and status. If they can get into the elite club and go to Harvard and Oxford and become involved in politics and high end social justice work, well then maybe they can be the ones who get schools for all the families they had to leave behind. We hope.

So, it still rubs me the wrong way because I hate elitist shit. I hate power for no other reason than who you know and where you went to school and how fancy your school is (if only to make celebrities more comfortable to visit there.) It shouldn't be that way. But it IS THAT WAY. And while I want to deal with the bottom line, the uncompromising destination, the future and how it should be. Someone has to be making the little baby steps into the suck-ass world of how it is. My boss was working that end. And perhaps, so is Queen O.

But, I strongly do believe that it needs to be worked from all angles. O can possibly sneak these kids into the power elite, in a nice tidy way that makes the elite comfortable with them. Others still need to be doing the work of the radicals on the ground. Oprah's special showed absolutely nothing about the girls left behind. They only have one life, and one childhood, and there is still such a great need for people to go out and do whatever little thing they can day to day to make these girl's lives better. And radicals, who may not get face time with the president or a 50 million dollar school, still need to be there and be heard. For it is the voices of the extreme who provide the checks and balances for the powerful. The extreme voices pull the moderates closer to the true middle ground. Extreme voices weaken the elite in the way the game players like Oprah cannot. We need both Oprah and Al Sharpton and all the black women who bitch about the stuff they deal with in no uncertain terms on a daily basis on blogs or in writing or in direct action. We need both my boss, and me and the disabled folks who go out and lay themselves on the steps of the courthouses and capital buildings that they don't have access to. So, I still don't think my opinion was totally wrong. But I see more now how Oprah's approach may be one way of being right. Since I'm not an accountant who is well-versed in international affairs or the elite culture, I have no idea if what Oprah spent is too much or too little. I guess only time will tell.

Oprah still bugs me. I mean--fine--they can have the hair salon, but do they really HAVE to wear Oprah's name on their uniform every day? And does she really have to walk around with her high priestess body language and persona as if she is not only the only one who can see the hallow around herself but she herself created it? She still is a bit too in love with her own goddessness than I am comfortable with. When you get power like she has and have that many yes women around and are trying to balance between keeping your membership card with the elite while doing social justice work, you have to be very careful to not become what you are fighting against. I hope she doesn't loose too much more of her perspective (because she seems on the brink to me at times). I hope she can enlist and educate people (and I'm not discounting that one of them might be me) and continue to find other ways for the girls left behind to survive.

For the girls in the school, I wish them the best and actually am quite excited for them to be going to that school. I do really, really hope that they do become high ranking people of power and even international leaders in Africa or around the world, and then I hope they go radical and kick some ass.

This Has Got to be the LAST TIME I Talk About Diapers

The second most common Google search that gets people to my site involves all things diaper related (the first being the hating of the O p r a h.) Then I get a lot of well meaning curious people that want to go cloth but just can't seem to get their heads around which products to buy, how much, etc. If I have time, I write back to try to explain that it is a SYSTEM, not just one product and that your mileage may drastically vary. It depends a lot on your lifestyle. How often do you want to do laundry? Can you afford a diaper service and remember to leave your diapers out for them on the right day? What do your kids do all day? How grossed out do you get by touching piss and shit? How much money do you want to spend? Etc. Still, they write back and say, okay, but I just don't get it! So which diaper should I buy?

So, I thought I would produce a visual aid of what I use and just refer to this post. Even though it may not be what will work for other people. But then they might better understand the system aspect of this. It's not just one all encompassing product that will work everywhere for everybody. Two disclaimers: First, remember that I have twins, so obviously I have more stuff than you need for just one. Second, I bought this stuff from different sources, some was given to me either second hand or as a trial promotion, whatever. I don't remember how much I spent. I will give you price info from a few current sites to  give you an idea of costs. Third, I don't really know how much I am saving with cloth over disposables. Do you honestly expect me to do that math? It hurts my head. If you want to figure it out, fine. I'll tell you what you need to know.

• My kids wore size one disposables for the first six months and averaged about 8 diaper changes a day for a total of 16 diapers a day.
• From six months to roundabouts 9 months they wore size 2 and had about 6 changes a day. 12 diapers total.
• 10-15 months, size 3, 4 changes a day.
• 15-2 years, size 4, 4 changes.
• 2 years - present, size 5, 4 changes.

Now, you just need to go get the unit price for all those sizes of diapers and multiply by how many I used per day per month. Then compare to the cloth products I'm about to show you and see how far you get, keeping in mind that I still use disposables about 20% of the time. Easy as pi? Yeah, get back to me on that when you figure all that out.

Okay, so here is the whole shebang of my stash of diapers and their accoutrement's:

Scary, huh? It probably isn't as bad as if you were to stack all the boxes of disposables that people use in two to three years.

From left to right:

Diaper Pail can be found here for $39.99, which includes the purple bag inside and some deodorizing disks. I'm not convinced I paid 40 dollars for a diaper pail and bag. That doesn't sound like me. But there is a wide variety of prices on different websites so I forget now. I don't put water in it, I just throw some detergent in the bottom of the bag, when its full, I pick the whole waterproof bag up and throw into the washer, bag and all. There is a slot in the lid that holds the deodorizing disks, which I forget to use half the time. Does it smell? Sure, but so does a trash bag full of disposables. It isn't too bad. Plus, I'm washing them more often than people are probably taking their garbage out.

Next is the whole gDiaper system: the bag of liners in front of the diaper bag, the stack of orange, green, red, blue covers in the back and the bunch of plastic liners in front of them. I got most of this stuff for free when gDiapers first went into business, (Its a local company that someone from my church was promoting). I only occasionally use this stuff. Mostly I use it when I am going to be gone all day with the kids and I don't want to carry around 6 dirty cloth diapers in my bag. I just throw the lining out. (BTW, I have a small version of the above washable purple diaper bag for toting soiled diapers in my bag. It works for one or two, but after that, I'm screwed. Thats when the g's are nice.) Sometimes I'll use the g covers with cloth diapers as well, but honestly they are getting kind of small for my kids, and I have the largest size.

Next to the gdiaper stuff are two stacks of diaper covers. The white stack in the back are bummis super whisper wraps. I swear I got them cheaper than this, but here they are going for $9.50 each. I think mine were only like 5 or 6 bucks each, but maybe I got them on sale or something. These are my everyday, tried and true diaper covers. You fold a diaper in thirds and shove the top edge in a little pocket and then you just Velcro them around the kid. I try to only use one per kid per day, though sometimes they get dirty and I have to use more. I think I have 12 of them.

The more colorful stack in the front  of the white ones are Fuzzi Bunz. These are the BEST DIAPERS EVAH! But I only have six, because they are the most expensive diapers EVAH! and these were given to me as hand-me-downs. They cost about $15 per diaper which includes the pocket insert. These are made of a waterproof nylon on the outside and then fleece on the part that touches your baby. It is really soft. In the back, there is a slit and you shove an absorbent pocket insert inside. The fleece makes poop just fall off easily, so there is hardly any shaking--or cursing--involved. I use these with a doubler (which I'll get to in a sec) for overnight. Since I only have six, that is three nights in these guys, and then on the fourth night, it is usually disposables while I do laundry. These are the only diaper (besides disposables) that I have found that will work all night. They wash nicely, they snap shut, one size pretty much fits all. Most of the time you can shake out the insert over the diaper pail, drop in the cover, and hardly get your hands dirty. If you have the means, I highly recommend. But since you throw out the cover with the diaper each change, its more laundry and a lot of money to get a decent amount to live on full time.

In back is a box of disposables. I need to be honest and say that I do use disposables part-time. I get whatever is on sale, these are costco brand. I use them overnight two or three times a week. I also use them when they go to daycare, because the daycare folks seem to be completely unable to figure out how to work a cloth diaper and keep all the parts to return to me. So that adds up to 2-4 diapers a week. Also, if a kid is really sick or has diarrhea or diaper rash, I will use them, because, I need to keep my sanity. My kids rarely ever get diaper rash. I don't think that using cloth has been a factor. Mostly they have gotten a day or so's worth of diaper rash when I have been unable to change a poopy diaper for a long period of time. Like at night or on a long car trip. One box lasts me quite a while, like a couple of months or so.

Below the box of disposables are a variety of little products I use. The brown box is diaper greens, a powdered detergent that also works sort of like baking soda to absorb odors so I throw a bit into the diaper pail. It is very gentle to the environment. I think it is just baking soda and soap flakes. It gets the job done, though very occasionally I will bleach the diapers as well. This stuff lasts forever. I'm only on my third box and its $12 a box.

The little blue bottles are cleansing greens. Same company. ($8, still on my first bottle.) You mix a tiny amount of this stuff into distilled water and it goes into a spray bottle that you can spray on your baby's butt. It smells nice and takes away that pee-y smell that they sometimes wake up with. It also lasts forever.  I use these with cloth diaper wipes (in front of the bottles) for quick cleanups. I do use wet disposable wipes (the light blue package) for the big, nasty jobs. I get whatever is on sale, usually a huge box of costco brand.

Next to the cloth wipes are cloth diaper doublers. (The things that look like folded maxi pads). I use these in the Fuzzi Bunz pockets along with the fuzzi bunz inserts (To the right of the doublers, they are included in the fuzzi bunz price) for overnight. Both are hemp/fleece. The doublers cost about $14 for 6.

Finally, the big stack of actual diapers are organic cotton Chinese or Indian prefolds. These are what I fold into thirds and put in the bummi wrap diaper covers. The Indian ones ($1.00 ea) are super soft but not as absorbent as the Chinese ($1.50 ea). I have a mish mash of these, some are hand-me-downs. I think I have about 24. I never go through them all before laundry day. I use 3 per day, per kid. These do not last overnight very well. But are quick and easy during the day. The main advantage to these is that they are cheap, cheap, cheap. When you get them, they will be super thin, but after you wash them in hot water a few times, they get softer and quiltier.

Many people say that cloth diapers also help with earlier potty training. I have not pushed this at all with the kids, but Naim is pushing me. So.....

Yes, it is about that time. Aaron has little interest, but Naim "practices" and tells me whats on the agenda as far as his bowels and bladder are concerned. Sometimes giving me a running play by play of the action in his pants. In case I miss it, he also lets me know afterwords so that I may take the appropriate action. We are in preliminary talks. I'm trying to negotiate a deal where we hold out until the weather is a bit warmer and I can leave him in training pants for a few days during the 'boot camp' portion of the job. I probably won't use pull-ups. I'll probably get a couple of pairs of cloth training pants. He feels the wetness and gets what it means and I'm not going to screw it up with pull-ups that absorb everything. (And they are really a pain in the ass if you ask me. Kids cannot pull those things up by themselves without ripping them.) I'm hoping Naim might inspire Aaron to start thinking about it, but I don't have any sort of timetable. I don't really care when they get potty trained, we'll just see how it goes. My dad thinks that all will be wonderful when they get potty trained because then his worst fear, that he will have to change a diaper, will not come true. However, what he doesn't understand is how convenient and wonderful diapers are and how much of a bitch it is to deal with a newly potty trained kid. The hurrying to help and unbutton and pull down pants before its too late. The having to stop every where and find a bathroom because the kid can't plan ahead yet, the having to clean out the potty or bend down and help the kid clean up. Oh, I can't wait! I'm in no hurry for potty training. But I will just play it by ear and let them lead the way. For now, we are just enjoying helping Ernie, and Elmo and all the dolls and even the little people and the trucks can sit on the new little toilet and "potty."

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

Bonus conversation:

Me: Just took Aaron out of his crib.

Aaron: Baby in bed.

Me: Looking around in his crib for whatever doll he wants. I don't see a baby in the crib.

Aaron: NO! Aaron baby. Aaron in bed. Aaron out of bed.

Me: Oh, you're the baby? Aaron is the baby?

Aaron: Aaron baby.

Me: Yeah, but pretty soon you'll be a big boy.

Aaron: No. No big boy. Aaron LITTLE Boy.