Coup

I have not written here in a long time, and that is because I have been busy trying to fight back the coup that my body is staging against me. Apparently it does not appreciate the governmental system of my body, but since this is not a democracy but a monarchy (I am the Queen in charge of this vessel) it is just going to have to deal. Since October 23 I have spent 22 days total inpatient in two different hospitals and countless days undergoing outpatient testing. So far I have received the brilliant diagnoses of malnutrition and failure to thrive, which I believe are a given since I have lost over 25% of my body weight since October 23 and certainly can not intake enough of anything to get the nutrition I need. However, without a cause that is clearly defined on their testing (and dysautonomia does not cooperate like that) the doctors refuse to do anything other than monitor the weight loss and provide some supplements. I am also going to be receiving PT and OT services since the malnutrition triggered rapid, progressive muscle weakness and worsened the ataxia. My two new escorts are my wheelie walker for very short distances (about 100 feet or less) and my wheelchair for anything longer than that. I think they sent over a child sized wheel chair because while the seat is perfect, the leg supports are too short if I put my legs up any higher than down at 90 degrees (which is uncomfortable) even on their longest extension. So my wheels need some adjusting (also, a seatbelt would be helpful to keep me from falling out of the darn thing, especially when other people are driving it). I have not been able to teach since October 22, and I miss my kids beyond what words can describe. I knew that I wanted to teach special education since I was in sixth grade, so for me it is not a job so much as a dream and a purpose. To not be able to do so right now is frustrating and disheartening and painful. I want to be there with my kids, celebrating each victory and encouraging them to go beyond all expectations set for them and being creative until I find a way that works to teach and provide the information as well as allow them to communicate understanding. I detest being stuck at home (literally since I can not get down or back up the stairs), primarily in bed. I would most likely throw my TV out the window if I could do so as I by nature am not a huge TV fan (I happily went all summer without access to a TV) and after two months of this I have far surpassed my tolerance for it. I normally can not go more than a day or so without getting outside, yet I have been outside once since December 12 and that was for the ambulance ride home- stir crazy? I can only tolerate foods that are totally smooth and pureed, which means I never want to see or eat another mashed potato as long as I live once I am better, nor do I want to look at infant rice cereal. I can, however, offer recommendations on stages 1 and 2 infant food which is an odd skill to have. I am working with my home health care nurse to arrange for me to travel to where my family is while I recover, for accessibility reasons (I swear this house is trying to kill me - throw rugs, a bathroom that the walker only fits into sideways, hallways too small for a wheelchair, those stairs), safety reasons (probably not a good idea to leave a somewhat fall prone klutz with a walker home alone all day), and my willingness to ask for help (I live with amazing friends, but I hate asking for help and would rather go without or risk hurting myself than be a bother). So it looks like within the next week I will be home, surounded by my family and constantly having to remind them that medicine has never found nagging to be a cure for anything. :)
Anyway, I have not forgotten this journal but I have been engaged in medical combat with a firmly entrenched resistance force. I do have a CaringBridge journal that I started to help keep my family and friends updated, especially while I was in the hospital but I am continuing it. The address is http://www.caringbridge.org/visit/bethanysummer if you want to check that out in between entries here.
May 2009 bring us all health, safety, joy, providence, and abundant love!

What You Leave Behind

On some level I comprehended that you never realize the legacy that you may leave behind you in life. I recognized that from a first person perspective you can never appreciate the third person impact of an action, a word, a thought, a moment. Yet it did not really fully take a living form for me until this afternoon. This summer I am working as a teacher at an inner city mission where thirteen years ago (13 years ago!) I attended a program they have as a high school student for a week in the summer. I attended for a week two summers of my high school life, at the ages of 14 and 15. As I was sitting at the computer this afternoon writing an email to a friend in the guesthouse (dorm) of the mission, a man approached me and asked me if I was me (i.e. he sais "you're ___ aren't you."). He had been "security" and staff at the project 13 years ago (thirteen years ago!) and recognized me. How he remembered me from all that time and from all those different teenagers that passed through the program is completely and absolutely beyond my comprehension. Yet somehow I had made some sort of impact to the degree that looking at me now, as an almost 27 year old with my hair dyed a different shade of red and glasses instead of contact lenses and such, he instantly recognized me without me even speaking to him or knowing who he was before he knew me. I can not say what that impact was - I hope it was positive, and based upon his interaction with me I am pretty sure that it must have been (i.e. he was shocked and surprised but pleased to see me). So how something I said, did, or was 13 years ago imprinted itself upon someone to the degree that they would recognize me as an adult without any context or clues is an incredible feat that I do not fathom but am absolutely amazed by. It also leads me to want to live my life in such a way that if an action, word, or choice of mine were to again make such an impact on someone I could be confident that it would be positive and that I was leaving a legacy of value behind. I would rather be remembered for something small but significant, something that in its tiny way made a difference, for a thousand tiny moments, than for one grand gesture. A thousand tiny flames are far better than one blaze of glory that quickly burns out.

Converting Silk Pajamas to a Parachute

I have never been a huge fan of leaps of faith, although recently it seems like I land from one only to find myself preparing to take another. Personally I prefer to have my feet firmly on the ground, even if that ground is rocky and steep because as long as there is ground underneath me I know where I am and that the fall is not going to hurt too badly. Once you leap you have no idea if the jump is three feet or three thousand feet and if the landing will be gentle or cataclysmicly shattering. So now I find myself on the edge again where I am taking three, oh no that was not a mistake I meant to type three, separate leaps of faith at once and feeling a bit like Sybil wondering how I can throw myself off of three ledges at the same time and quite probably receive three different landing results. First is the most enjoyable leap of faith in the fact that I am taking an enormous risk in participating in this summer missions program. This is most like going over a waterfall in a barrel. If nothing else the ride will be unforgettable and you will have an incredible story to tell for the remainder of your life. Over on cliff number two is a leap that I am taking by choice because I have this annoying little thing called a conscience. I detest injustice, but I abhor and detest injustice when it is directed at someone who is incapable of defending themselves and when it is being done because of prejudice, ineptitude at one's job, and laziness. My conscience is staging a revolt against the school policies of only giving parents the exact amount of information required by law and nothing more, or even outright lying to them. I have never played nicely with others and have been a rebel, so why stop now. When given a choice between obeying a system that I know would not give this child a proper educational opportunity or obeying the moral code of my own soul the choice was really not that freaking difficult. I have not been explicitly forbidden to do anything that I have done or am doing, although I think it may have been assumed that no teacher would do such things after the "don't do anything stupid and be very careful in all you say and do" speech this past August in which we were instructed about choosing words carefully and being selective in what information we offer. Well, I will not participate in the miseducation of any child and this this year I have been subtly backdooring information to parents and finding ways to insure that every child received what they needed even though my own teaching has been greatly hampered by the work of my assistant, or I should say inability to work. All I will say on that note is that it is April and because of a mistake she made while changing a diaper one of my children ended up putting feces in his mouth and eyes yesterday. I would expect that by now she could at least change a diaper without screwing up. So anyway, leap number two is culminating in a series of events where I will refuse to participate in the miseducation and mis-service of a child (and potentially more children). Could this lead to trouble at work, and with my job? I don't have an honest answer other than I would rather jump than stand there and watch all of my little ones fall. Jump number three is one I was forced into by the administration of my school in reference to said assistant. Because of the fact that she is unable to complete simple tasks safely, let alone actually keep the children from hurting themselves or each other, let alone ASSIST ME in teaching I have been placed in a position where I can not remain at the school for next year. The administration has refused to do anything about this issue except admonish me to be patient, to instruct her better, and to make my expectations clear (OK, don't let the kids eat crap! Is that clear enough for her?!? And if they run away for the love of everything holy could she possibly make an attempt to stop them or catch them?). I have 11 children in my class and 1 adult child. I refuse to lose my career and whatever is left of my sanity to this situation when she causes a child to be seriously injured, and I say when not if. Since she is untouchable at my school and has yet to even be reprimanded for anything she has done (leave a child on the changing table and walk away? Well, just remind her, she is capable of learning.) I am out of there. However, I have not been guaranteed a job opening in preschool for the fall and I like the simple things in life like food, water, shelter, medical care. So I am applying for a job in a completely different area of special education which would require me to return to school to get my masters degree. Since sixth grade I have wanted to teach preschool special education and after two short years I am seriously considering bailing at least for a while. HUGE LEAP. So, since I hate not being in control and I detest leaps I have decided that what I need is a parachute. I checked out the parachute we have in our classroom at school, but it has an odd hole in the center that I am a bit concerned may cause some issues with slowing my descent. Then I considered purchasing one from a sky diving group, but then I realized that anyone who jumps out of a plane for fun isn't quite stable and would probably sell me an old one in need of repair. So I have settled on a solution. I am converting silk pajamas into a parachute. Hey, before you laugh, the Confederate army made a hot air balloon out of silk dresses during the Civil war so I am certain this can be done. At least with a parachute when the ground comes rushing up at me after I leap I can slow the rate at which I slam into it, or if it turns out to be a beautiful leap afterall I can perhaps sustain the ride longer and enjoy the amazing wonder of faith and providence before having to return to earth. If nothing else it will sure make a statement as I throw my Sybil self off of all three cliffs. My banner to the world as I jump will be a hodge-podge, mismatched crazy quilt parachute of silky pajamas. Interpret as you wish.

Hamster Wheel Keep On Turning

We had a pet hamster once. Okay, more than once because those things are not built to withstand children, but that is beside the point here. It was obsessed with the spinning wheel in its cage and would run with such enthusiasm that it would make the wheel spin wildly and throw the hamster out and into the mulch. Undeterred, the hamster would stagger around for a moment and then climb right back into the wheel. He never realized that no matter how fast he ran he didn't get any further than the same damn cage in my brother's disgustingly smelly room. I don't know, maybe the running created a little hamster wind of fresh air for him. Anyway, I have become that hamster. I am well aware of the fact that for the past few months (year?) I have basically gotten no where significantly different than where I was before but I keep jumping right back on that wheel every darn time I get thrown off. Apparently my intelligence level is that of a hamster. Duly noted. A lot has happened since I last wrote, including my requesting a transfer of schools for next school year and applying out of district in case a transfer does not occur. Condensed version of a long story - I refuse to sacrifice my career to someone who should never be allowed to work with any living creature more sophisticated than the aforementioned hamster. Long version - if you can't write something nice, don't write anything at all (until you securely have a job for next year). Getting tired of the same damn wheel though, I did decide to change my frantic run a bit. I restructured my class, which has resulted in two dazed and confused assistants and a mutiny of children who do not appreciate having structure introduced into their world. Someone forgot to inform them that the classroom is a dictatorship, not a democracy, and I am head dictator. Therefore, "no" is not an option unless I offer it to you - not even when you scream it; not even when you scream it while hitting me. You would think I was asking them to take a bath in boiling oil instead of the much worse task of sitting in a chair at the table doing things like painting, coloring, playing with sand, and playing games. NOOO!! Not games! Not Paint!! NOT FUN!!! What they want is anarchy, total freedom to run around like three year old wild children, literally climbing the walls, and demanding that we fetch them this toy or that treat. Um, hell no! Reality check. I don't take orders from anyone who still pees in their pants. I will listen to you, I will engage you in lots of fun learning games, I will offer you time for supervised free play, but I am the dictator here. True, I am a dictator that rewards with candy and cookies, but then again Marie Antoinette offered cake... :) I plan on writing more now that I am back on a steady hamster wheel, with more predictable crashes into the hard ground outside of it. Hell, I don't even know if I am writing anything that anyone reads of just carrying on a strange written conversation with myself. Either way, its a hell of a lot cheaper than therapy!

Overstay My Welcome

I apparently had overstayed my welcome in Michigan because my plans to remain until today (New Year's Day) were quickly changed by the threat of a severe winter storm. Since I arrived just before a big storm that caused relative chaos, I decided that this was a sign that I needed to leave before I ended up sleeping in the airport for a few days and developing that temporarily homeless disheveled and desperate look about me. Perhaps learning from the disaster of Jet Blue, or perhaps trying to fill still empty flights, Northwest was announcing free flight changes. Not being one to turn down anything free (well, almost anything. When a three year old offers a free hair cut, it is always best to say no. And then hide the scissors somewhere very high and out of sight.), I rapidly changed my flight. Stupid snow. So much for my plans to celebrate with my brother and his wacky but precious family. Instead I rushed around preparing to make another quick exit, which seems to be becoming a norm for me. I had a chance for a last round of Wii with my niece and brother and sister in law before leaving. That game system/torture device is a whole separate post but lets just say that I suck. I not only suck, but I am embarrassingly awful and even the three year old points this our to me. Quite eloquently she will laugh hysterically and then inform me "Aunt B, you suck!". Thanks Little Bit, you still pee your pants and are too short for this darn game to even realize you are trying to play, so really, you have no room to talk. But thank you for your opinion. I then dashed to the airport 2 1/2 hours early only to make it through security in 5 minutes. Had I been running late, security would have chosen me for a random screening and I would have had a free physical courtesy of the federal government. So I was able to eat "dinner" at the airport (bowl of rice with sauce+ funky cool Japanese soft drink = $15=so not worth it), shop at the cool but also overpriced airport stores, and still be at the gate over an hour before boarding. I politely asked the ticket agent at the gate if I could change my seat, because when my flight changed I was given a middle seat and I hate being the monkey in the middle with elbows jabbing me from both sides and no escape route clearly available. Perhaps it was my sweet demeanor following the rude ass in front of me who was demanding that she somehow make his late flight arrive on time (because you know, she can do that if only she tries) or perhaps it was the fact that I willingly offered suggestions to help her son with some learning issues when she found out that I am a special education teacher, but she totally hooked me up. I was allowed to board early (guaranteed overhead luggage storage, no need to stand in line) and when she switched my seat to an aisle seat she gave me a seat in an empty row. I ended up with an entire row to myself. Oh yeah, that was awesome. I curled up across all three seats for most of the flight with my coat as a pillow and took a nice nap. Some of the other passengers were shooting me rather nasty looks as they sat elbow to elbow, but I just contentedly stretched out and enjoyed my sweet gift. It was better than first class any day. I safely escaped the snow, leaving just as it started snowing, and arrived home safely. However, to the baboon who decided to throw my duffel bag by its shoulder strap and thus not only broke the strap but must have dropped it rather hard I have a memo for you. What the Hell were you thinking? I realize that airport luggage transport does not require a high level of education, but come on! Even I know that you can not throw a 40 pound bag by a thin shoulder strap and expect it to actually be successful. I hope someone picks you up by your suspenders and we can see which happens...an incredible wedgie or broken suspenders. Idiot. Oh, and to the wonderful shuttle company that left me stranded at the airport on New Years Eve. I can not write what I am thinking, but may the fleas of a thousand camels infest you in places you can not scratch in public. My heroes, my best friends here, rescued my freezing and very desperate arse from the airport thus not resigning me to spending New Years at the airport or spending my entire paycheck on a cab ride. So I got the message from the snow storm (get out you vagabond. This is not home anymore, you are a gypsy.), and am back where home is for now. But really, was a foot of snow necessary for me to get the message? I hope everyone is having fun digging out from my message! Happy New Year!

Fruitcake with Nuts

For the past week and a half I have been the equivalent of a living Christmas Fruitcake. My family has been passing me around from place to place like the Christmas gift that you never really asked for but can't quite turn down either. Surprise, it's a fruitcake. Oh thank you, just what I always wanted. (whisper - we can pass it off to great Aunt Bertha. She deserves a fruitcake for Christmas.) Everyone is careful with the fruitcake, just in case anything happens that it should appear damaged and used (as if it is possible to actually damage a fruitcake), but no one really wants to hold onto it for too long in case it gets forgotten on top of the fridge only to be rediscovered some hot July day as you are searching for another bag of chips for the picnic. I, the fruitcake, have been shuffled from one place to another dragging behind me my little suitcase and cheerfully celebrating the holidays while accepting that I am one gift that will soon be passed on to someone else. As good old Ben Franklin said both fish and houseguests stink after three days...especially when you don't offer them a fair fighting chance at the shower before all the hot water runs out. But in this family, the fruitcake may have the upper hand. Because while I am being passed around, I am being circulated amongst a bunch of nuts. We put the "fun" in dysfunction and "screwed" in "screwed up". I am actually among the sanest and most normal in my family...that is one incredibly scary thought. Almost enough to make me click my bright red shoes together three times and say "anyplace but home". Then again, these nuts are my nuts and what is a fruitcake without nuts? Just another lonely fruitcake without anyone to keep it company. And this is perhaps the stupidest thing I have ever written - well, sober at least. Whatever! My christmas has been wonderful, fruit-cakey, and nuts but I would not want it any other way! Well, I could have done without my niece peeing on my suitcase and then knocking the Christmas tree over almost on top of me. And my father's dog sticking his tongue inside of my mouth.... but those are the nuts!

Cold Con Artists

I have not yet experienced the combination of awe, joy, and terror that must be having a child of your own. However, I do think that after working with children in some form or another for over half of my life, and two college degrees, I have figured out just a few things about children. For the love of everything holy, do not fill your child up with cold medication and then send them off to school thinking that no one will ever possibly catch on to your little plot. First of all, if your child is verbal, they will rat you out every single time. Please, if your child is willing to tell me your version of how babies are born, what makes you think they are not going to tell me that you gave them cold medicine that morning? And yes, you should wonder just what your precious child has shared with the class about your family...just wonder about that one. If your child does not yet talks, I will still find out about your plot. See, even if you administer the medicine as the child is leaving to get on the bus to school that still means that the medication will at least begin to wear off if not wear off completely before your child leaves my classroom to head home. Darn those doses that are necessary every 4-6 hours. And I do find it suspicious when a child morphs from an animated, interactive child to a listless, snotty, coughing form curled up on the carpet almost exactly 4 hours after they would have left home. See, that high school math does pay off. I know that parents have to work, that child care is expensive, and that it is not easy to care for a sick child. However, I need to work too, and caring for your sick child while teaching nine others is not easy either. Plus, sticking my hand into my pockets and finding handfuls of kleenex covered in someone else's snot is just a whole new level of nasty. Almost equal to having your child wipe it on my sleeve - MY sleeve, not theirs! Can we just cut the act and be honest here - at least tell me up front that you are sending in a sick child so I can have a fair chance. Not that in a preschool classroom where we breed new and exotic germs I ever have a chance. Perhaps I am just grumpy because one of those darn germs managed to catch up with me in spite of the obsession with hand sanitizer, Clorox Anywhere Spray, and "let's wash our hands". So to whichever child found it in their heart to finally share something, even if it was this disgusting cold germ, thanks. And to their parents who tried to sneak them into the classroom with tylenol and dimetap - I may save a few little germs to bring along on my next home visit. Just to return the favor.

Fly Away Home

After someone left handprints (well fingerprints) somewhere other than my arse, and they were not using fingerpaint, I did what any self-respecting woman would do. I called home, crying, and talked to my parents who made arrangements for me to fly home early for Christmas. I desperately needed to be around people who would make me feel safe again, who would keep my mind occupied by things other than what had occurred, and who would not make me feel judged. Now before you picture a Norman Rockwell painting, my family could probably win the Dysfunctional Family Olympics even without bringing along the off-shoots of the family tree. But we do crap well - we are used to pulling ourselves together to take care of one another when the crap comes. And we seem to find crap as regularly as rain in the rainforest. Hence the rubber boots...now the white coats are another story. So anyway, I managed to sneak in on one of the last flights before it started to snow. It snowed, and snowed, and snowed. And then, just for fun, it snowed some more. I think we ended up with close to a foot of snow on the ground and a few inches inside my boots. I would like to thank God for going to all that trouble to create such a beautiful welcome home for me, I mean the biggest single day snowfall in years is quite an honorable welcome. However, God, next time could you remind my brother not to drop his ginormous wet boots on top of my very cute new red shoes? The sweet new ones I just bought and wore once before bigfoot's boots made them into a soggy, dirty mess? Thanks. Please feel free to stick that memo to his forehead. Oh, and also could you remind my adorable nephew that if you hit your aunt in the face with a snowball there will be retaliation? Once is funny but then hitting me again while I am still blind from the first one...that is just wrong. But please don't warn him until I exact revenge. Thanks. Amen. This is the best treatment a girl could find for a bruised soul and a shaken mind. Family, snow, hot chocolate, sweet innocent children (well, maybe not so sweet and innocent - you will pay my pretty...you will pay) who are excited to play in the snow and get ready for Christmas, and the magic of the Holiday season. Most of all, wherever I am I have some of the most beautiful little handprints on my heart. And my sweaters, and my jeans, and tiny little fingerprints that refuse to wash off my glasses.....