Wednesday, October 19, 2011

It's Elementary my Dear...

Ok. I'm not over it. I'm not over what an awful experience we had at Keoneula Elementary. Here's how I know.

 Case example #1. Whilst walking home from the post office with my husband we take a detour so I can finish my in depth analysis of how wonderful Iroquois Point is compared to the "old school"  detailing everything from the carpool lane to the parent participation, to extra curriculars to having soap in the bathrooms. An hour later I notice my patient walking buddy keeps steering me towards home and I realize that he hasn't said 2 words for the entire time.

Case Example #2. Whilst walking one morning a month ago, a woman stops me and asks if I am from Colorado.  It seemed like a bizarre coincidence until I realized I had a ginormous ralphie on my shirt. Case closed, right- no she asks me if it ever goes away? Missing Colorado you mean? Yes she says- and I dang near burst like the dam road and I tell her the honest answer- no, no it doesn't. She's got a little boy and he's wearing a Keoneula shirt- but it's school time, he should be in school. She tells me she has a daughter in Kindergarten there, he likes to pretend. She doubles back and starts walking with me. I ask her how it's going. Not good she says, but she doesn't know what to expect since it's her first child in school. Did I know she couldn't even go have lunch with her daughter? Yep. I knew that.  She said she checked in on her child and that she is not real happy that the class spends an hour sitting and reading, an hour sitting and writing and very little instruction. Yeah I know- they call that "workshop". The kids who do well are bored, the kids who struggle get help- the kids in the middle stay in the middle. She likes her house in the neighborhood but says she is considering moving on base because the school seems so much friendlier and more well rounded. Do it- I tell her. Don't think twice about it, don't look back- you will be a lot happier for the next 3 years if you do. I tell her our story and the battles I fought just to be allowed to volunteer. About how I felt unwelcome on campus- that parents had tried repeatedly to get involved only to be turned away.  Then I told her the piece de resistance- my fun interactions with the principal. She must have taken my advice because our paths haven't crossed again.

Case Example #3. I volunteer on Wednesdays. The school has these cool red folders that only go home on Wednesdays with all the relevant communications, fundraisings, events, whatever in one place on one day. It's awesome for those of us who can't keep track of things anymore. I take care of  stuffing the red folders for the first grade. The teachers say Thank you every single time. Today I planned ahead and picked up Subway on the way to school so I can have lunch with the girls.  I check in with the office and I get called in to the school counselor's office to sign some additional paperwork on Lily's 504 plan. We spend and entire hour chatting about schools, kids, life. An entire hour. Most of which I relived our negative experiences at Keoneula and Ewa Beach and cancer and diabetes. She tells me specific things she has noticed about my kids. She knows them by name. I question again why I didn't move my kids to this school sooner. But the important thing is they are flourishing now she tells me. And that is true. I don't know if I feel good or bad that I just spent an hour in therapy with a school counselor. I need to get a life. But then I think about it and these kids are my life. I shouldn't feel bad about wanting the best for them and checking to make sure they get it. I won't feel bad about regretting letting someone treat them less than what they deserve. At some point I have to let it go but I also wish that there had been a parent who had been there to warn me. I don't want anyone else to suffer if I could prevent it.  Because right now we are doing better and the school is great and the kids look forward to going and are learning so much. That's how it should be, it's elementary my dear.

Tuesday, October 4, 2011

Blessed Limes

I don't know why I try to cook. It always turns into a last minute dash- that stressful time you see on those fun chef wannabe shows where everything has to come together in 5 minutes and you are 7 minutes behind. That's the story of my life right now.

It was a rainy day and I have a great pumpkin soup recipe from my cousin that involves some really yummy black turtle beans grown organically at her farm called Breakneck Acres. Now pumpkin items can go either way in this house, but I am going to give it a go in the spirit of rain and fall and insanity.

I give myself plenty of time and allow the soup to simmer. And simmer. And simmer. I am about to heap it into bowls when I realize it's missing something- the last minute lime zest and juice the recipe calls for. I grab my limess and begin to zest one right into the pot. I am zesting, I am zesting. My zesting gets away from me and the little green orb loterally is zested right into the pot. Shit, I whisper under my breath and reach for the ladle. Mom! Phillip scolds me, then I feel a little hand patting my back.

"It's Ok mommy, Bless you."  I am blessed indeed- Bella will probably spend the rest of her life wondering why I sneeze so much in the kitchen. Someday I will tell her- it's the limes.

Wednesday, September 21, 2011

Monkey Bar Malfunction

I would like to point out that for 5 years, we had a swingset in our back yard, complete with monkey bars. It was a playtime staple. The weather wore it down and when I spent more time removing splinters from various unmentionable body parts, we decided it was time for the beloved swingset to go.

Yesterday was an average day of chaos, filled with average challenges and average weather. The youngest 2 monkeys begged for me to take them to the park where Kiera has soccer practice, so we all went. The past few times we've been there, various middle school students were trying out their parkour skills over a half wall by the bathrooms. Bella joined in. Not great for the maternal nerves, but I survived. So did she.

Bella is not known for her grace. When a friend visited recently, I briefed her that she might hear random lumps and bumps- followed by "I'm Okay!" That would be Bella. She seems unable to master the art of stairs. Or walking around walls. Or objects. Or just walking. Good thing she is bouncey. She rebounds pretty well and is unusually tough for a little mighty mite. We spent the first couple years of her mobility wondering if she had one of those rare disorders where you don't feel pain. As I learned last night, she does feel pain and rather loudly.

We arrived to the park and had been stationed less than 10 minutes when Bella runs to me- I can do the monkey bars! Come watch!  I watched as she scaled the length of bars, jumped down and shot me a thumbs up.  I am mid call, trying to invite kids over for Phillip's birthday. He informs me he can handle the task via text, but as a mom- I still like to know parents are involved- so I take it upon myself to call the parents. It's rather tricky to invite pre teens over for a movie, video games and a sleep over with the vocabulary restrictions that have been imposed by the soon to be 12 year old. I am not allowed to use the words birthday and party together, under no circumstances utter the word "sleepover" and never ever ask if they can stay to "play". It's taken me 2 days just to figure out how to communicate our plan.

I have finished call one and I hear a distant scream. I know that scream. I scan the park by the monkey bars- I know how this is going to go. She isn't there- in her pain, Bella has decided to run a lap around the park.  Her right arm is limp by her side. Oh here we go. I have flash backs of Kiera in Burger King- me telling her she was okay over chicken nuggets while I watched her shake her head and her elbow swell.

I pull her into my lap and feel the length of her arm as I hug her. She doesn't fuss. She is whimpering, but she is probably more scared than anything. After 10 minutes, she calms down enough to brave the playground again. She takes one step and screams. Oh crap. I give her tylenol and try to distract her. She wants to go home. Her elbow is swelling. Bella is tough and she still has tears streaming down her face. If I hurry, we might be able to make it to the acute care clinic and back by bedtime. Oh who am I kidding?

The acute care clinic used to be my pocket ace. It apparently is everyone else's now. It's standing room only, with kids coughing up green stuff, fevers, vomiting and about 4 babies who have fallen from half a foot, whose mothers have decided they need a full work up for brain damage. I hate to tell them it's a hereditary problem they are facing, but the red headed monkey is phasing in and out of pain induced delerium outbursts. The toddler sorts are running around and chucking sippy cups like footballs. I park us by the antibacterial dispenser.  3 hours later, 3 trips to the radiology department and back(resulting in only 2 xrays) I have decided that this is futile. The lowest common denominator is working tonight in every department so I tell the nurse that we are to speak to Dr. Lewis per request from the radiologist. It was a gamble- Dr. Lewis was the doctor the very caring but incompetent radiology tech said ordered the tests when she phoned her superior to say that Bella was guarding her arm and getting a full set would be problematic without sedation or heavy pain meds. We head back to the waiting room and the nurse assumes we are done, I don't correct him and tell him we were instructed to talk to Dr. Lewis immediately. I have promised dinner, ice cream and a treat to get us through. I figure we are going to get an appointment to ortho, a splint and we might be home by my bedtime. No such luck. Mid discharge- the doc gets a page with instructions that she is NPO and needs to be seen in at Tripler immediately. WTFO? The nurse who just rounded the corner with a celebratory popsicle for the monkey has to literally pry the orange ice from her hands- as it is now 9 pm and we have missed dinner, dessert and bedtime.



I debate just taking her home and dealing with it in the morning. But I put my faith in the system and do what is supposedly best for my child. She is sound asleep as we pull into the ER. There is no parking at the ER so I carry her from the upper parking lot. I am grateful it's not Lily and my back immediately spasms in a genious stroke of catholic guilt and punishment. The receptionist is rude and so I am rude back. Before we can complete being rude to each other, a triage nurse appears and whisks us away to a symphony of glares from the waiting room patients. I hand her the note from the acute care doctor and we get to visit a section of the ER I am not familiar with. It is quieter and has the feel of the pacu or recovery room. I ask the nurse where we are- she is nice enough to put it bluntly- it's the ER for less emergent cases that are going to be here awhile. I am grateful that I had my ipod and book in my purse. She keeps telling us how she will need an IV, the doctor comes in and doesn't see an immediate need for an iv- but he does need more xrays. Off to radiology. Amazing how quickly and painlessly people who know what they are doing can get the task accomplished. We  go back in our holding cell. Bell is about to doze off when the nurse enters with iv gear. We have a terse discussion over the need for it. She poo poos me and says it is needed. I ask if the doc requested it specifically. No, but it is good to have just in case. Not my first rodeo- too tired to fight this battle-will deal with this later. Bella is a champ- and I'm sure other than the fear associated with it- the iv didn't hurt near as much as her elbow. The problem is she now has 2 sore arms and can't get comfortable to sleep.



 The doc comes back as she starts to doze. He tried to wake her. Do you really need her awake for this? I ask. I do need to know where it hurts. Ok- press on parts- if it makes her stir- you know it hurts. He looks at me strangely. Can she have something for pain? I ask him. Sure- she can have whatever she needs. Well since the nurse insisted on putting in a damn iv- I say give her something iv worthy- just for the hell of it- kinda like the iv. He honestly tried not to laugh- but orders morphine when the nurse comes in. She seems surprised that she gets more than tylenol and he quips- well she already has the iv in place. I like it because morphine is a slow push- she has to stand there and give it in tiny increments. Yeah- uh huh- not my first rodeo peeps. I wonder if I invite this nice doc over for dinner if we could go over the finer points of splinting and casting- these are probably skills I am going to need with boo.

Friday, August 19, 2011

Monkey in the Middle School

Yep. I have a middle schooler. sigh. clap. creak. That last one was the sound my joints make in the morning. In the afternoon sometimes too.  I took a moment away from shopping for depends to try and sum up my thoughts.

I was more scared for Phillip to start middle school than he was. Mostly that is due to having been there and experienced the sea of choas meet hormones driven decision making that plagues this age group. The first 3 weeks have been interesting and I've kind of been letting him float and see where that takes us. We had 1 trip to health room and some kinks to work out- but all in all he seems to be doing well. He repeatedly says he's got it- so I'm gonna let him run with it until I hear otherwise. I'm trying not to be overbearing and trust him because sometimes as an involved parent, that can be the toughest thing to do. I am trying to make the transition from hands on- to guided leadership. I find that I do have a tendency to micromanage, but I think we both are learning valuable lessons in our relationship.

I ask about homework, but I don't ask to check it over as I did in elementary. I offer to help. It is usually declined. The 3rd day after school I am with the girls- somewhere between Bella's gymnastics and shopping for Lily's new soccer cleats when I get a call from the Middle schooler. 

-Hey mom, what's local mean?

I resist the urge to spew my political commentary on the segretory version that pops up here and tell him- of or pertaining to a common area. Part of a community.  why?

-I know the definition, but what does it mean to be a local?

Here or in general? Why, what is this for?

-I have to write an essay for Social Studies on whether or not I am local.

At this point, I literally have to reign in the barrage of comments leaping out of my mouth. I wish I had a magic lasso for times like these that my wild stallion of a mouth(that one was for you babe) leaps over the fence and I have to go hunt it down. Ok back track, be civil, educational, not emotional. Try not to make this into more than a social studies assignment.  I explain that local means to live or be from a certain area and part of that community.

-But mom, are we local?

Well bud, that depends on who you ask. We are a part of this community and we work and live here and have for almost 7 years. But many people feel you have to be born in a place and have family there to be considered local.

-Lily was born here, is she local? 

See in Colorado they call it being native. Here they call it local- but it is more of a generational thing. It's really hard to explain. Colorado is my home, but Toledo is also my home- I am native to toledo because I was born there- and used to be local to Denver- but now home is where you and your sisters and dad are.

-Yeah yeah yeah, but do you think I am local?

Do you feel local?

-No.

I think it's more about how you feel than what labels other people want to put on you. You can be whatever you want to be.  Just make sure you address what your teacher wants and give a well thought out opinion and you can't go wrong.

-Okay- got it.

I fume for quite some time. Is this teacher labeling my child or assessing him for his thinking skills?  I am not excited that the entire first year of middle school social studies is again being spent on Hawaiian Studies. I was so grateful for a substitute teacher his 5th grade year who devoted her 2 month stay to teaching states and capitols- which are not addressed in the elementary my kids formally attended. When she pre tested the class- less than 50% could name 5 states- she got answers like Chicago, Guam, Samoa.  Most 4th-5th graders in Hawaii can tell you Haole means without breath or what the ancient Hawaiian gods represented, but cannot name all 50 states much less their capitols. Don't even get them started on laws and government organization- it soon becomes self evident why I faced some recent problems with the DOE. I find that I am actually looking forward to the Middle School open house so I can get a feel for the school and this teacher.

The night comes, it is a whirlwind of families and zooming around to classes. The classrooms are hot- standing room only and many teachers remark at how surprised and grateful they are for the turnout. Many of us are coming from a school where parents were neither welcomed nor given a tour or open house- this is a novel concept and clearly appreciated. I have already communicated with a couple of teachers regarding storage of supplies and snacks for diabetic emergencies in class. See the law is nice enough to address diabetes here- so the first day of school Phil dropped off 3 boxes to 3 strategic locations and there were no problems. The school is very institutional and I think technically we are supposed to call it "modern" or "green" but as one mom said- it feels like a prison in here. It does. There is wall to wall shades of gray. Some might call them "clean lines". I say bare.  Lots of high windows to allow natural light, but not a lot of art or warmth. But for what the school lacks in architectual variety, it makes up for in staff. Phillip's teachers all seem to be inspired and genuinely interested in the students and their growth. I now have a better understanding of the advisory period which is called exploratory wheel. He has a caring, openminded advisor, who is also his math teacher. She is a bit soft spoken, but Phillip assures us she's not so soft spoken when kids aren't listening.

I am impressed by the language elective and it's function as in introduction to various languages and cultures more so than trying to impart vocabulary of a singular language. Later kids can choose which language they would like to explore. That makes sense to me. Informed decision making- brilliant. And finally we pile into the social studies room. And it all makes sense. The teacher prides himself in giving the most homework.  There is a lot of emphasis on reading the news. There is a lot of emphasis on written communication. Thought is encouraged. I can't argue with any of it so far, well maybe the homework part. Some of the homework is through computer programs and although the test can be taken to better the grade, he only accepts the 1st grade- so do it right the first time.  The unit is Hawaiian Studies. But included are world and local current events. He is very systematic and precise- and I have to agree with my husband's analysis- this is real world experience- the kid has to learn how to adapt to the different quirks and requirements of different people- it will be a good learning opportunity. And that's when it hits me. That is why middle school is so tough- you are barraged with educational learning- but it is also a time of immense emotional growth. The big transition. One teacher flat out says he doesn't grade on behavior- he didn't know how to act when he was 12 and that's part of this middle school learning process. He does expect the work- and he does allow kids to re do their work for better grades the entire time. Later in life it may not be an option- but here is the time to learn by doing. I am impressed. I appreciate the diversity among his 6 teachers and the varying levels of expectation. One expectation was always the same- they have to work hard. Some present it as quantity, others leave it up to individual determination for quality. A big part of learning is learning how to deal with people imposing the parameters. All in all it gives me hope for the monkey in the middle school and a little peace of mind that we are moving in the right direction.

Wednesday, August 10, 2011

Monkey School

The days of coaxing and cajoling everyone to simultaneously grin at the camera are gone. I am embracing the realism of my environment and this about sums it up! This is the 2011 First Day of School picture. I have been waiting for this day for a very long time.  Putting it into action is another thing entirely. Those curls don't brush themselves you know. And the owner of the curls just so happens to have the tenderest of scalps of them all- go figure. Then the red head is just hopeless and I let her embrace the tousled look because before we even made it to the car- I had sprayed and resprayed and tied her hair in a pony 3 different times. Nothing short of shellac would work for that one. Ironically enough- the boy is the most self sufficient in the hair department.

This year poses a new challenge for us- no uniforms. For the sensory sensitive of the crew- this is a big deal. Especially when her mom refuses to let her go to school in the holey bleach spotted sleep shirt that passes for a tshirt when we go to walmart. Wednesdays are spirit day, the one day a week they wear red shirts. Any red shirt will do. Lily monkey has 1, ONE shirt that will fit the bill. I told her Saturday when she wore it- that I would not be doing wash before today so she was going to have to wear a different shirt. After pleading with both older siblings for hand me downs- she had 2 choices to pick from. She had them both on at different points in the morning and she disappeared as I called them out for the morning picture. Lo and behold- she dug the darn thing out of the hamper and put it on. I asked the other ones to perform the sniff test and she got an "eh", a shrug and a "smells fine". Surely the wrinkles will fall out by the time we get to school. There weren't any obvious stains. It was be on time or fight the battle. Be on time won.

It wasn't pretty. Red's fourth pony was quickly losing purchase and she apparently owns only 1 of  no less than 6 pairs of shoes. Not 1 pair, 1 shoe of each pair- 6 shoes total- none matching.  Lily decided a headband was a necessary last minute addition but not all of her hair was allowed admission and Kiera suddenly decided she needed to memorize as many spanish words as possible in the 15 minute car ride- and her only source of spanish words was me. Of course Lily is convinced she speaks spanish and starts rattling off a combination of pidgin and gibberish- it's all the same really which frustrates Kiera and amused the heck outta Bella who is nervous as all get out for her first day but can only show it by random emotional outbursts. I look back and Bella went from giggling to what looks like either a seizure or anger- I wonder if I need to pull the car over then I realize she is trying to say Como estas.....which is unfamiliar to her so it requires the mobility of every single face muscle.  I distract them by pointing out the school sticker on the car in front of us and that if they do really well in school they will get one and I will put it on the van. Lily asks if she gets one can we put it on dad's car- I say sure- cause he's not here and he can deal with that fallout- mwah ha ha. Bella says- what about me? Hmm- we have no more vehicles- sure- we could put it on a bike- or better yet- Phillip's bum so people can see it when he walks to school. And of course that's a hit with the crowd and they are giggling like crazy. And in that moment- the drive to school just paid for itself.

Tuesday, August 9, 2011

I think I broke my Aloha.

It has been that kind of morning. A morning where my neighbor volunteers to drive the girls into school so I offer to give the preteen a ride to school. So I end up sitting at an intersection for 25 minutes that has a 9 way stop with a mix of functional and non functional lanes and no light. So between those who deem their time more important than everyone else's and those who just have no regard for the law, I am beginning to lose patience. I beg my kids to put on their earmuffs as I know where this is going.

I am 5 cars from the stop sign and a white van pulls next to me on the median and waves like that makes it ok. Around here, they call it driving with aloha. You can cut someone off- but if you wave while you are doing it- it's all good. So I smile and pull forward. Just slow enough so the guy behind me can keep on my bumper- which he does. He has been behind me the entire way too and we have just watched a dozen cars zoom by on the right and cut over. The car behind him does the same, and so on and so forth. White van with too many gold bangles gets tired and flips us all off and makes an illegal right turn. I finally make it to the light at school. Guess who pulls up next to me at the light?  I smile. White van with gold bangles mouths "Fuck You". She might have said it- so I rolled down my window- so she could hear me loud and clear. "What's your fucking problem" she yells. "You. You broke the law. " I yell back. "So what?" she yells"you (inaudible)bitch."  The light turns as I remark that she is an idiot. It may or may not have been loud enough for her and the entire intersection to hear. There may or may not have been an expletive. I am immediately ashamed and outraged. 2 of my kids are in the car and this is not a good example.

What did she say? I asked- because I'm pretty sure it was a racial commentary on the fairness of my skin. "She called you the b-word from the katy perry song" Phillip offers. I know that- the other word- "I don't know, I don't know what it was. " Good. No, not good. Bad. Very bad. All around bad. If I wanted this type of thing- we'd live in a major city. Not in a suburb on a dinky island in the middle of the ocean. Sure the crime is lower here. I'm beginning to think it is just a social experiment on the positive effects of laziness.

I don't know what the solution is. Me yelling at every idiot who breaks the law is not it. That intersection is unsafe and has been so for 3 years. I have written HPD. Periodically you will see an officer monitoring it- generally after a kid is hit- because there have been a couple of those incidents. The solution is to put one of those electronic message boards that blinks"slow down. Let people cross". I shake my head every time I see it- because the people who are not slowing down to stop at the stop sign and who don't care if they maul kids trying to get to school are not the sort of people who are going to take the time to reflect on the finer points of the suggestion of a blinking sign. It's us poor law abiding fools who are forced to sit there for 20 minutes while the flashing sign taunts us- as the other half of society blows by.

So was this morning about some idiot lady in a van trying to cut me off??? Probably not. It was the cumulative effect of a series of rather blatant injustices regarding race, policy and law. If I hear, that's just how things are done here one more flipping time... I can't listen to morning radio for 5 minutes without being barraged by one racist comment after another. Just because you are an equal opportunity offender, doesn't make the act any less racist or any less wrong. I'm tired of stupidity and ignorance being excused. When my 6 year old tells me that kids at her old school called her a fat bitch- I try to rack my brain for a reasonable way to explain this. He was wrong. It is wrong. It is even more wrong to me that there is no consequence. Just as you can drive on medians and make illegal turns, 6 year olds calling each other names is no longer a disciplinable offense. It's only wrong if you get caught mentality. They are just words right?  Despite the 6 notices I receive each year(filled with lots and lots of official words) about title 19 and bullying and how it includes words and discrimination and that there is zero tolerance in any school for such behavior. I have not seen this in practice.  Words are the foundation of our beliefs. The same words can convey very different things in the way they are used. The word aloha is a perfect example- hello, goodbye, love, peace, acceptance, let's get drunk and party(as in aloha Friday).

All I can figure is that the problem is in fact me. Somewhere I either misinterpreted aloha or broke my aloha.  There are many who do believe in aloha- the true spirit of aloha.  But they are the rare gem being over taken by beaches. I believe in aloha. I was not born nor raised here- so there is a contingent who will say I cannot possibly understand true aloha. I prefer to believe that we are the exact demographic who truly can understand aloha- because it is a choice not an obligation. The aloha spirit is one of love, compassion and acceptance. Acceptance of friends, family and strangers alike. After all strangers are just friends you have not met yet. The true spirit of Aloha is carried on the peaceful breeze, the constant tide and the suns rays. Yet as the breeze turns to gale, the tide to tsunami and the sun a burning force- the spirit of aloha can be taken under. The true spirit of aloha could be what allows people to let people over in traffic- but the true spirit of aloha is also waiting your turn so others don't have to wait for you and doing the right thing even when no one is watching. The true spirit of aloha is recognizing when your aloha is broke and trying to fix it. My aloha is broke, but I don't think I can fix it alone.

Thursday, June 23, 2011

Just another day in paradise

It's been a month since pukefest '11. That was awesome. No, really superiorly fantabulous. Of course Phil was TDY. Bad things always happen when he's TDY. Always. Despite countless promises post last health apocalypse to avoid unnecessary TDYs- he came home from work 2 weeks ago and says- so um when does your friend get home from Disney?

Me, well I decided I was approaching this all wrong. Enough of the impending doom, they are all out to get us and by they I mean fate. I was going to be positive God Damnit. It was time to embrace the positive and gain back the confidence I lost somewhere. -You miss her too? I ask

Um, well I have to go to Langley. - Ah well, do what you gotta do- we totally need the healthcare.

Wait a minute. Wait a cotton pickin minute- you think I cannot get through one lousy week without a crisis?

No, of course not- I just like to all the bases covered. Plus I don't want you to be lonely.

No you don't think I can do it or no you think I can? I have 4 kids. I. don't. get. lonely. Somebody always wants something, usually when I am in the bathroom or on a call- which is rarely with an actual friend because it is with the pharmacy or the endocrinologist or the oncologist or the public health nurse.  Somebody always wants to give me something, usually it's the flu, or a cold, or a dead insect- all highly preferrable to worms- and by that I mean the intestinal kind. Just like your job takes you to Langley- mine keeps me here with promethean accuracy.

I have been lost between getting through the day and wanting to make a difference. Sometimes just getting through the day does make a difference. It shouldn't be that way. But what way should it be? There are no guarantees. Everything is what we make it. There are always challenges and factors outside of our control. You deal with them and move on.

We drop Phil off at the airport and it seems like we just did this. I push away the sense of impending doom and embrace the opportunity that has presented itself. I clean my bathroom and do a few loads of laundry. The kids are off doing a lemonade stand.  I make them dinner(which is to say I drive and get take out) and then it is time for baths and bed.  1 day down- see, no worries. I got this. Day 2- rinse. repeat. Day 3 is livened up with by the soon to be middle schooler's band practice, gymnastics , art class and a trip to Costco for rations. That night I take a quiet moment to pause and appreciate the normalcy of it all. I can do this.

I wake up day 4- the official half way point of this TDY and think I will get the house cleaned today. I no more than complete the thought and Bella climbs up into my lap with complaints of a tummy ache. Yeah you know how this ends. Within an hour she's puked 3 times- once all over my bed. Well- I was going to wash the sheets today anyways- look at me embracing the positive.  Downstairs she pukes. And again. My neighbor comes over for a cup of tea and after 3 more puking episodes offers to take the other kids so I can take her into clinic.

I am literally on hold with the clinic when I get a call from school. Phillip threw up at band. Here we go. Again.  I go get him and Monica takes the healthy girls to her house. We go into clinic.  We get the diagnosis- it's just a virus. I smile slightly on the way home. Embrace the normal. I am kicking normal's butt. Kids get sick. It makes for a long day, but it's manageable.

When Phil calls I chat like it's an average day- which if you think about it- it is. He wants to talk to the kids. I hand the phone to the preteen fully confident that he will grunt maybe twice and hand the phone back. No- the first thing out of the lil shit's mouth- yeah band was good until I threw up. I feel like I just got caught with my hand in the cookie jar- I shake my head trying to get him to stop- oh noooo he goes on- yeah and Bella threw up alot like 8 times. Between the horror of it all I'm offended- she puked 8 times when HE was around- let's not forget the other dozen or so times.  No we are embracing the positive. I get the phone back.  -So the kids are sick?  - oh yeah- well you know this IS normal for us. He laughs hysterically. I'm sure it's a lot funnier from his vantage point. -Do you want me to come home?  For puking kids? Nah I got this. Just another day in paradise.

Wednesday, June 15, 2011

Risk/Benefit Analysis- Vacation Vaccination

How many times have you heard a person complain- I don't care about such and such- I just wish I had a choice?  The fact of the matter is that you always have a choice- but you perform a Risk/ Benefit analysis of your options before you make that choice. Telling ourselves that we don't have a choice is one of the ways we make ourselves feel better about having to make the tough decisions.   What we choose to perceive plays important roles in our choices. Our faith, belief system, politics, history, genetics, customs, comfort levels- all have a role. When we let these factors play into our choice- it sometimes feels like the choice itself has been eliminated for us. Sometimes by putting events into God's/fate's/the majority's hands- we step back and it is easier to accept control is not ours- or relinquish control a little more easily because someone else is making the decisions.  Sometimes we know from past experiences, or others' past experiences what the result will most likely be and we attempt to save ourselves headaches or time by taking the path of least resistance. There are times that we want to be the person who makes that decision and there are times we just wish someone would go on already and make it.  The disconnect happens when we make the decision and get resistance or provide resistance when the decision has been made for us.

In my day to day activities- I make about 85 choices/decisions an hour. What to eat, what to feed the kids, how much to feed the kids, what to wear, how to get the kids to get dressed, no don't wear that, wear something appropriate- why isn't this appropriate- I don't know it just isn't. Why? Because of what people think? Yes. Why does that matter? Ultimately it doesn't, but it does and you will learn that people treat you different based on what they think of you and I have enough battles to fight- that is not one I choose to fight.  But some people might like it. Yep. So can I wear it? Do you want to fight that battle? Yes, so can I wear it? No. But I want to. I know- but I said no. Then why did you ask me if I wanted to fight that battle? I was curious. That's not right. Neither is that outfit- go change.

So I load the kids into the van and venture off to the new clinic 12 minutes from our house. Yep- 12 minutes. I can't park in that amount of time at Tripler. How's the care you ask? Who cares? 12 minutes. In 24 minutes- I can ask for a referral if I need it. If not I wander the 12 feet over to the pharmacy there and get what I need or 12 feet the other direction and get immunizations or blood drawn. 12 minutes. This week we ventured to Tripler 3 times. Had I been able to make these specialty appointments closer to home- I would have saved myself an hour and a half, 2 gallons of gas and a headache- times 3. If I charge what I'm worth per hour- let's face it- I wouldn't be debating this because world class physicians would be knocking on my door- but let's say 10 bucks an hour, $3.75 a gallon- I would have saved $67.50 this week. We won't even get into sweat/stress equity. Yet in the civilian counterpart world- I would be paying that in co pays alone-at least- so beggars can't be choosers- or can they? Everyone has a choice. It's whether or not you believe you do.

SO A quick physical and TB test for Miss Bella Boo turns in to a vaccination marathon. Apparently over the past few years- I have let her currency on the rare disease immunization front slide a bit. I distinctly remember her getting a whole series of shots not so long ago- so I was a bit put off that she was due for not 1 or 2, not 3 or 4 nor 5- but 6 yes folks 6 shots. It also does not help that I spent the better part of the past couple of weeks reading a fascinating book about Vaccine A- the history and suspicions surrounding the Anthrax vaccine. That book led me to read up on the history of vaccination.  I had a choice. There is nothing that says she has to get the vaccines. If I choose not to, then she can't go to school. If I choose to get them- we face any numbers of complications- but hopefully none. I used to believe vaccination was the lesser of two evils. It is a convenience for both the immunee and the medical staff. The whole point of vaccination is to give your body a chance to build immunity under a controlled situation. Whatever the side effects of the vaccination- they will clearly be less than the full blown disease counterpart. The CDC no longer routinely touts vaccinations as "safe" - they say that they are less risky than contracting the disease. Wow- there's some crazy feel better mumbo jumbo for you. I firmly believe they are correct. I do believe that all vaccines are less risky than their full blown disease.  But no 2 bodies are the same and something as less risky as peanuts to one body could result in death for another. Vaccines are no different. Yet the numbers show that the adverse effects are rare enough to make it worth it. The question you have to ask yourself is worth it for who? 

I do believe vaccination is valuable and has deterred innumerable mass outbreaks of disease. But the quest to find the quicker, better, faster, cheaper vaccine has not been without casualties. Many have heard of controversy surrounding thimerosol in vaccines. Thimerosol keeps staph bacteria from growing in vaccines- it was added in the 1920's after 12(of 22) children who received the diptheria vaccination died due to the staph contaminant. The problem is Thimerosol contains mercury- and mercury can be bad when ingested, inhaled, or otherwise internalized. In the 20's they did not know the risks from this compound and had they- when confronted with thousands of deaths from diptheria- it might have had more benefits than risks to continue using it until an alternative could be found. Yet according to the CDC - there have been few reported cases of diptheria in the past 2 decades. So the risk is starting to outweigh the benefit. If you have a very small chance of contracting a disease naturally and there is an associated risk with the vaccination- what is the best choice? That's a tougher decision. Diptheria itself is not a death sentence. It has been shown that caught early- antibiotics effectively treat it. It is still highly contagious thought- so that is a definite consideration. Yet is it the fault of the vaccine-or does the problem lie with the additive to the vaccine or the potential for spoilage. By 1999 they removed thimerosol from most vaccines, yet some still contain fun ingredients like formaldehyde, aluminum phosphates, phenols, or glutaraldehydes.

There is also the association of vaccinations with Autism or other autoimmune disorders. The problems here are many fold. You will rarely find the scientific community lining up to declare causality. Like the medical community- more things are found through exclusion than inclusion. They will point out that there is a correlation, but that correlations in no way imply causality. It reminds me of a study we discussed in college. It was an during infant development study- the correlation between healthy babies and bottled water was made. Study after study was performed- yet causality could not be determined. It eventually was revealed that the socioeconomic fators of the babies were being overlooked. Babies who were given bottled water were from upper class families who had more access to healthcare, better nutrition and higher education. The babies who received tap water were usually from middle to lower class families who did not have the means to buy fancy water or seek routine healthcare. A randomized double blind test(repeated many times over the past few decades and endorsed by municipal water companies!) showed there was actually very little difference between the health benefits of tap vs. bottled water. Bottled water companies will tell you it's better for you- but there is no real evidence of that. If this line of though fascinates you- I highly reccommend the documentary Tapped- it was definitely an eye opener for me- a former water snob.

So here's the thing- the side effects from vaccines are rare. Rare means less than 1 in hundreds who get it. The diseases they buid immunity against are uncomfortable and potentially life threatening. Yet the rare side effects only are rare if they don't affect YOU. Once they affect you- they are anything but rare. Yet the government and varying control agencies have to act like the parent in the situation. There may be a chance someone might have a reaction- yet if that keeps the other kids at the school free from disease- that is worth the risk.  They will be sorry if you have a reaction and they will gently point out in 12 different spots in the literature that there is the potential for reaction, fever, pain, neuroses and brain damage(some view autism as this anecdotally) but the benefit outweighed that possibility.  My advice is this- if you are concerned- do your research. The incidence of reaction is small- but that doesn't mean there isn't a causality either. You can opt out- but if you do- you have to be prepared to fight that battle. That battle might be not getting into school or it might be a rare disease-but the choice is yours.

Friday, June 3, 2011

Still alive.

I firmly believe you should never pass up an opportunity to help someone out. There have been many times in my life I have helped out a stranger who soon became a friend. There have been many times I have been helped by strangers who then became friends. After all, why would anyone try to be friends with a person who walks by them in a time of need?

I hate that I barely have time for me, much less catching up with good friends. I hate that it has been so long since I have talked to many of my friends that I have no idea if the number I have saved is current or even in the right state. I hate even more that I can't be certain which state many of my friends are even in. But I guess that is why reunions are a big deal and a few brave souls with time and effort - spend the time and effort trying to regroup old friends like stray kittens.

The other day I got a call from a classmate of Phillip's- she is taking courses in holistic medicine and needs patients to practice on. In a normal Mallory universe- I would have jumped at the opportunity- I believe there are many benefits that our "traditional" medical establishments miss due to the overwhelming capitalistic nature of the pharmaceutical arena and forces that drive healthcare in our nation. I felt great sadness that I had to decline the opportunity to help or be helped because I just don't have the hour to spare. That is to say- if I have an hour to spare I am choosing not to spend it focused on any sort of health care- because far too much of my day to day time is held hostage by that very subject. And part of me wonders if I just passed on an opportunity to help a new friend and it makes me sad. So I took an hour out of the past 3 days to call an old friend just to say hi. I have to say, it felt better.

I feel horrible that through the past few years turns of events in the healthcare of my children that I have to spend all my spare time fighting with and for them that I can no longer contribute to the many friends, causes, friends causes and day to day gatherings that were an instrumental part of my past.  It is my job, my directive and my priority as a parent to fight for my children- but I deeply mourn the opportunities at friendship, partnership and community that we miss out on because the fight for them is so time consuming.

I hate that instead of making and taking a meal to a friend in need- I have become that friend in need. I hate that simple gatherings become a huge source of stress. I worry about the roid rage ups and downs of Lily and the blood glucose ups and downs of Phillip. I worry that simple owies and illnesses always brought about by these gatherings will become hospital stays, or worse. I worry that Kiera is slipping further away and hate that she wants to be anywhere but with us and alternately grateful that she does. I worry that all that Bella knows is a life of being surrounded by sickness and she will spend her life sick or trying to be sick to get the attention she deserves. I worry that I worry too much. It sure as hell isn't for lack of inspiration.

I hate that my husband rarely asks me to do anything, as he is the one person who knows exactly where I am coming from. Yet this morning he gently reminds me it is drill weekend, a reminder that we have 2 more days without a break. A break that will not come after those 2 days because the air conditioning in the van needs to be fixed, the house needs to be cleaned, bills need to be paid and paperwork needs to be mailed. He also gently asks, if I could find the energy to maybe come to a readiness briefing and potluck at work on Saturday. Readiness for what? I ask sarcastically. Disaster? Deployment? Do I really want to sit for an hour(yes) and listen to someone tell me how to prepare myself and and family to handle impending doom(No)without my partner? Because what will end up happening is I will spend an hour being mortified that Lily will announce loudly every time she or anyone else farts and then Bella will giggle hysterically and I will have to remind them to be quiet. Phillip will be annoyed that we all exist and between being alternately moody and goofy will have to be reminded to keep his hands to himself. Kiera will ask me every 3 minutes if it's over yet and if any of her friends will be here. Every 5 minutes someone will have to go to the bathroom. Despite having just gone in the last 5 minutes. I will wonder if it is worse to get up and go to the bathroom again or call the little cretin's bluff and lose.I will silently know that I have faced impending doom and the only way to handle it is to face it and deal. Phil watches me as I go over the scenarios in my head, with an apologetic grin, it's just that we haven't been to anything in awhile and I think people are beginning to wonder...

Wonder what? If I'm holding up? If I can carry on like nothing is wrong? Are they wondering if we can survive this latest hit? Do they wonder if we are part of the team?  I never faulted working moms for not participating in squadron events. Many did. I don't always want to deal with mommy stuff after dealing with a day of mommy stuff- I know that dealing with mommy stuff after a day of work can be equally overwhelming. I wonder if we are the family that makes other families feel better that they are not us. I wonder if I have the energy to smile and be nice. They say it takes more energy to be mean- that's really not true- it takes the same amount of energy the difficult part is the choice.

Phil looks me in the eye- I just think people are wondering if you are still...alive.  That I am. And so are the 4 monkeys. No small feat. So I guess it's time to get out there and live, even if it's just to show people that you are in fact still alive.

Wednesday, May 11, 2011

Thunder Monkeys

Phillip's Flag Football team was aptly name the Thunder Monkeys. It was a good season. Phillip's friend Kale was usually QB which meant Lil P got some good hookups! A new season has started and all I can say is we definitely miss our old team. It was a good group and a great Coach.

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Monday, May 9, 2011

Just keep swimming....

I love Nemo. I am so glad they found him. He inspired a project which delved us into pet care last summer. It was an exercise to prove to my children that they were not ready for the responsibility of a dog. That is to say- I am not ready to have to feed and provide medical care for one more creature. So instead we ended up with 4 aquatic pets.

Bella's fish has been trying to die since the day we got it. It started off a beautiful bright red betta fish with her matching red headed temper. We set him up in a divided container shared with Lily's bright blue and purple betta fish. He used to flare his gills and exert all kinds of alpha male dominance, which is pretty funny considering he is a beta. ba donk donk. So after about a week, I decided the little container was stifling for two of them, and got another little container. The red fish became depressed and started hovering at the rocks. I changed water frequently and nothing worked until I put the two containers next to each other again so he could flare at the blue fish. One fish two fish, red fish blue fish- I thought every time I walked into the kitchen. Then the blue fish started looking sick and I was tired of changing water- so I got them each a bigger tank with a filtery bubbly thing. Really it was for convenience. After a few months, the novelty wore off- I was the only one who fed, watered and changed the collective tanks. Phillip's fish was the first to go. There wasn't much warning. We gathered around the porcelain tomb and wished him well on his journey in the fishy afterlife. A few months later- Lily's fish began to pale and show signs of sickness. We treated the water. And by we, I mean me. We tried pea treatments- frequent water changes- the whole kit and caboodle. On all Hallow's Eve, appropriately enought- blue fish ceased to be- shall we say- swimmy? Red fish was never the same. Meanwhile- Kiera's fish sits up in her room in the same water it was in about 6 months ago, algae clouding the sides of the tank- happy as can be.

Everyone has limits. I have about reached mine. I'll admit, I didn't change the water as much as I should have and I probably didn't feed red fish as much as I should have. I talked to him daily- and he would always swim to greet me as I got Lily's medicines ready in the morning. He would wiggle by and say hi as I packed lunches, did dishes and started counting carbs. He would swoosh past the side as we gathered needles and supplies for insulin shots. Shortly after I started counting carbs for Phillip- I wondered how many carbs were in this little red fish. That was when I knew my attachment to him was gone. When basic needs stop being met- when tension and exhaustion levels match- we get to a point we do things we aren't really proud of. Things we would never do in a perfect world.

Stupid red fish continued to burrow into the rocks. Sometimes he would get trapped and we would help him out. Last night he burrowed. I was done. I spent the last week getting up nightly to check on pancreas boy. Then Saturday night, I got sick. I went to bed early to be woken at 1030 by pancreas boy who also was sporting a good case of the runs. We hadn't eaten the same thing at all that day- so I figured it was a virus. There is always something floating around in a house with 4 kids. An hour later I hear crying and moaning. Lily has a sore neck and shoulder. I feel her- she feels warm, but is bundled up- she quiets- I go back to bed.Phil wishes me Happy Mother's Day- as it is now past midnight. I snort at the irony. An hour later it begins again. This time she is hot. I double dose her with hydrocortisone and give her motrin for the aches. I rub her back for an hour until she fitfully falls back to sleep. As I flop back into bed, Phil asks if I want to know what my Mother's Day Present is. I know what it is not- a good night's sleep. No, No I don't. As I drift off- I hear Pancreas Boy pad into the bathroom. Yep- one of those nights.

In the morning, Lily is achey, Phillip is sick. Kiera departs our household as soon as humanly possible. I can't say that I blame her. I begin the day's balancing act of sugars and insulin and hydrocortisone and ketones and love. I worry constantly and try to escape into pages of books. As I pass by the tank, red fish is face down wedged in the rocks again. This time you are on your own buddy. Let us see what squirt will do. I walk away. Later on- I check- little gill movement- pale color. He's probably not gonna make it. Phil taps on the side- nothing. I debate momentarily as I go off to bed, helping him out. But I am tired. I barely reach the stairs before Phillip is throwing up again, I don't give red fish another thought. I have enough directions to worry about.

This morning red fish is dead. All I can feel is relief. I start dismantling the pump so we can dump him as soon as Bella wakes up. I dump some of the water and shift the rocks to free him. He thuds back to the bottom. I dump most of the water. I am mixing tea with honey for Phillip when a little arm wraps around my leg. Is my fish dead mommy? Yeah babe- I'm afraid so. Little tears pool in her blue eyes. Can I dump him in the potty? Yeah- let me get the rocks out of the tank- I don't want them in the potty. I dump the fish into a secondary container and he appears to swim. Oh crap. See mommy he was just sleeping! I look at his gills. There is slight movement. I look at Phil who is gathering Lily to go to the hospital for her scans. He says- no hunny he's dead- it just looked like swimming because the water was moving. I nod. She carries Red fish into the bathroom. She dumps him in and I flush mid dump to make sure he is swept away. As I think about it- I know he wasn't going to make it. Sometimes we just keep swimming because that's all we know how to do. Even when all the powers that be stack against us and are trying to flush us into a great abyss- sometimes you just have to keep swimming.

Saturday, April 23, 2011

Tangled Up In Bella's Birthday

To quote Rapunzel in the movie Tangled, according to Bella, It was the best day...ever! She took the center stage readily and soon became a guest of honor diva style. I was so happy to finally be able to give her  her own party and the theme was too much fun. I've found that whimsical is a good substitute for perfection, rarely do things turn out as planned- but they do turn out. I was really looking forward to the lanterns and they were a bit of a challenge , but so beautiful once they took flight. In true Bella style- she stood around licking herself while we tried to get the lanterns lit. I wasn't sure if she was pre-emptively taking anti fire measures or if she found some left-over frosting. We can truly say that we risked life and limb for her on this one and this successfully concludes Mallory Girl Birthday Season.

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Friday, April 15, 2011

I spent the past couple of days dealing with run of the mill mommy problems- puking, school issues, sports issues, work issues- general life issues. On top of that we throw in a few doctor's appointments, a diabetes education meeting at the school and trying to get ready for Bella's Birthday. For 4 birthdays now- she has been added on to someone else's party or skimped due to medical ailments . I was determined this year that SHE has a party. So far that's going swimmingly. Other than provideng me with a creative outlet for art therapy projects- it's not quite coming together. Yesterday, I took a sick day- for whatever bug Phillip had- was kind enough to visit me- fortunately in a milder form.  Mommy sick days are like being essential personnel in an emergency- not a whole lot changes. The biggest change perhaps is that I forced myself to sit and work on some of my project ideas for Bella's birthday- invitations, decorations, that kind of thing. I also took a few extra minutes to catch up on news.

You can imagine my dismay and horror when I stumbled on a story about a 7 year old girl who had plastic surgery on her ears to ward off bullies. Monkey say whaaaaaat???? The mother defended her actions saying it was for her daughter's self esteem and to ward off school bullies. Fail. The doctor who performed the surgery stated that children with these "abnormalities" were likely to suffer from self esteem issues. Fail. Yeah get ready, I've brought my soap box.

No. Plain and simple. She is 7. Her mother has failed her. Do I think the actual act of a kid's ears being pinned back is atrocious? No. You do what you gotta do. If you are emotionally inept and unable to teach your child how to deal the cards they were given and you have the means to fix it- go on with your bad self. Not all cards have to be played. Clearly you can trade cards in now much earlier than before.  Ears being pinned is not an uncommon thing. It is a relatively minor procedure in the grand scheme of things.

My problems are 2-fold. 1) The attention seeking mother. 2) The Cop-out bullying excuse.

That little girl had ginormous cup ears. But guess what? She also had hair that covered them.  She also has the potential to do anything she puts her mind to. Imagine if she had been a boy. Believe it or not there are still schools and establishments that require certain genders to have appropriately groomed hair. Perhaps why greater than 50% of these surgeries are performed on boys.  The girl was asked if she was bullied and she said no. The doctor said such kids repeatedly get called child "Dumbo" and "Mouse Ears". My children call each other Dumbo all the time and I assure you it has no reference to ear size- it is in reference to acts of stupidity or carelessness. Perhaps I need to lobotomize my children? That seems counterproductive. As for Mouse Ears- People pay a lot of money to get those at Disney. The mother states "children are mean" but that the rudest comments come from adults. No kidding. Because  those adults were children once and had self serving parents who neither took the time nor effort to appropriate their words or behavior. The kind of adult who was taught as a child that appearances matter more than character- that the volume of your voice was of greater importance than the words it carries, that the best defense is a good offense and to always look out for #1.  The same messages Ms. Shaw is teaching her 7 year old.  I have no problem that she had her ears pinned, I have a problem that she champions it as a national cause, offering her child up to be the poster child for anti bullying measures. By this logic, differences are the problem- not bullying. I am all about preventative measures. How about telling your child they are perfect in your eyes. That they are worth more than the size of their ears. That anyone who belittles them or makes them feel less than they are worth is not worth their time. That they can deal with adversity and rise above it. That other people's behavior is out of their control, that they are in control of their self image. That everyone has something different and sometimes through these differences we are set apart because we grow from it. Ms. Shaw said she would do anything to keep her daughter from being bullied- which means she has not taught her daughter how to handle the situation if it presents itself. She has shown her daughter that there was something wrong with her that needed to be "fixed".  By this logic, if we could get all those other kids contacts, institute some sort of mandatory diet plan, stunt the growth of the too tall, then supplement it for the too short, feed the thin, under develop the over developed and over develop the under, teach lefties to use their righties, teach kids to be better at sports, help kids learn better, dress kids better, and bathe kids better we might actually make a dent in this bullying problem. Fail.




http://www.nydailynews.com/lifestyle/2011/04/14/2011-04-14_mom_approves_7yearold_for_plastic_surgery_to_pin_back_ears_to_avoid_schoolyard_b.html

Wednesday, April 13, 2011

Jello on the Poop Deck in the Perfect Storm

We were told repeatedly to watch out for certain signs of low blood sugar and ketoacidosis.  Low blood sugar is very dangerous because the brain isn't getting sugar which it needs to run your body and you could die. Ketoacidosis is caused by really high blood sugars and if left untreated the entire system becomes toxic, you could die. Allrighty then. You must maintain a careful balance of sugars in a constantly changing system.  To do this, you inject insulin to match food intake. But you have to be careful to consider current blood glucose levels, activity that you will or have participated in as well as like 12 other things like stress, sickness, etc that could change the dynamic. We are 2 weeks into this and the initial shock is wearing off and we are adjusting to the schedule.

As a near and dear friend reminded me- it wasn't so long ago we were entirely overwhelmed by Lily's series of medicines- now that's second nature. It will all normalize. It will. And for awhile- which is to say approximately 3.7 minutes on Monday, I thought there might be a chance that this week would be the week it would normalize. It is not. We went from trying to get high sugars down, to getting low sugars up. Hence the whole balance concept- but sheesh. Phillip was fairly perky about the low blood sugar thing- if you discount the shaky, pale, confused disorientation. Mostly he was game to eat all the high sugar things he could without having to stick himself with a needle. The downside is that his fingers have more pokes than a pin cushion from all the glucose monitoring. Monday night his sugar level did not want to stay above 80, and it is supposed to. Every 10-20 minutes he was complaining of shakiness and looked pale. 2 juices later, we went to jellybeans. Then a granola bar. Then a peanut butter and jelly sandwich. I told him if that didn't do the trick I was going to get him a happy meal and a shake. I saw him secretly praying to blood glucose gods to hold out just a little bit longer- but they- like me were ready for bed.  His level got in normal range. I tossed and turned until it was time to check him- wondering if he was dropping and what this meant. Were we in the fabled 'honeymoon" period where the pancreas temporarily works for a little bit before it quits for good? Was he getting sick? Were his doses too high? Was it the exercise? Did he inject insulin into a muscle by accident?  I finally just got up and went to check his levels. He was still normal. Ok- at least I can get a couple hours of sleep. Until I hear him in the bathroom. Uh oh. Must be all the juice. May need to rethink serial juice boxes in the future.

Tuesday morning he doesn't look good. He doesn't want to eat after he already had his insulin. I check his ketones, normal. Blood sugar, normal- but will drop with the insulin he took. We switch to tea with honey to cover for the breakfast he doesn't feel up to eating. He spends most of the day on the couch and by afternoon he is better. Then he wakes me last night with severe stomach pains. He is obviously miserable, I wonder if I should take him in or wait it out. He already has an appointment for tomorrow- well I guess it's today- this afternoon. All his levels are normal. We can wait and see. I try a cracker to see if it helps settle his stomach. It does not. We are camped out on the couch- he is feeling horrible and I feel horrible there is nothing I can do.  He moans he hates it and it isn't fair. I have to agree. I wish I could take it away, but all I can do it rub his back as he twists and turns. By 3 am he is throwing up. I hope this relieves some of the pain and he can sleep for awhile. It does. I check his levels, still normal. I try to go to sleep, but am lost in worry. A new learning curve, a new set of parameters. Can someone who doesn't have a pancreas left, get pancreatitis? Is this what it's going to be like for every illness? If this is the case, I'm going to need a case- of sedatives. Is it just an average bug? Only time will tell. Maybe next week will be the week. (For the sedatives).

Friday, April 8, 2011

Free Labor

I have no idea if we will get paid or not this upcoming pay period. I wish I had the energy to get worked up about it. But the fact of the matter is we have done this act a half a dozen times since joining the Hawaii Guard 6 years ago. My husband was on 2 year orders, which meant every 2 years (3 times) he had to renew his orders which meant there may or may not be a gap in the pay cycles depending on whether or not the chain of powers that be put their signature, entered data or generally paid attention before the due date. Sometimes it happened, sometimes it didn't. Each time we felt considerable stress- waiting to see if we would have to pay the mortgage and float the rest of the bills. We knew we would get paid, eventually. There are many families out there who are facing loss of hours, or jobs- for them there will be no reimbursement.

When Phil went to train in Florida, same routine- he became part of a different pay pot=lots of paperwork and uncertainty. Same thing on the return trip. Fortunately, it all worked out.  Many times people enlist and stay in the military for this coveted ideal called job security. I have heard the snide comment more than once during this recession- about how it must be nice to know where your pay check was coming from. I know exactly where it comes from. It comes from your tax dollars as ciphoned out by congress and signed off on by the president. The tax dollars many would like to put back in their pocket so they could reinvest in society, strengthening our economy. Tax dollars that also go into the pockets of congressmen who seem to have lost sight of their real purpose.  Perhaps we should consider letting Starbucks run the government.  Because the ridiculous expenditures in the military are legislated, not mandated by those who are forced to serve under a bureaucracy of mismanagement.

Let's face it, war does not pay. At least not the right people.  Millions of dollars are added to paychecks in a field ripe with benefits. I am amazed everyone doesn't want to join the military- it is so lucrative. GO ahead let the sarcasm wash over you. You get commissary benefits- which means food at a cost that is about 30-50% lower than the local grocery stores. You get "free" medical care. You get all kinds of travel and special discounts. These benefits were alloted because soldiers found their civilian counterparts made 30-50% more than they did annually. When you are deployed, you get additional "benefits" such as separation pay and hazardous duty pay. You get free transportation to some of the deadliest places in the world.  You get to carry a gun. And get shot at.  All you have to do is sign your life away.  Sounds like a bargain to me.

On average- a congressman makes $170K a year. He/she is expected to work 130-190 days. They average about 140.  Less than half a year. Mind you that representatives do not permanently reside in DC- that they have homes in the state they represent. Their trips home are subsidized, many times on private jets. Their families generally live in the state they represent. So theoretically they are spending 140 days a year away from their families.

On average- I couldn't tell you what a soldier/airman/seamen makes. It depends on their education and job,as well as time in service. Military members are very much a cross section of society. Income can range from $30K to well over $200K.  The days they spend away from home vary. Many are gone over 340. Sometimes it's only a couple of weeks. Depending on their job, they may or may not have to pay for their own airfare to see their family in their own state of residence. Sometimes their trips home are subsidized on loud cargo jets that may or may not leave on schedule, may or may not break down due to lack of parts from budget cuts and may or may not divert on the way home.

The average American has felt the recession for years and in 2006 the average american income was $46,000. They may or may not have a job due to cutbacks. They may or may not have taken a pay cut in the past few years, many who have are just grateful to have some sort of paycheck. They generally live with their families and will travel for work if necessary. They do try to pay for healthcare, which is usually out of pocket. They eat at McDonald's because sometimes it's cheaper than the manpower hours used to make a homemade hamburger and that proverbial slice of apple pie. That is capitalism.

On average Americans are dissatisfied with the way the government is being run. Conscientous citizens vote and write their legislators , yet rarely receive responses.  So are you telling me in the 200 and some odd days representatives are not in session- they are unable to return mail or is there so much of it that they can not possible respond to it all? If they are not reading mail- in what other ways are they in touch with their constituents?  Perhaps we should start electing officials by Facebook poll-or perhaps on Twitter. Is that where we will find them? If so, they must be privvy to the bevvy of unhappiness being thrown their way. Perhaps we should make both military and government service mandatory.  Then the common man and woman could get a feel for how tough it apparently is to spend other people's money. Perhaps it's time to level the playing field- and remember what is worth fighting for- what brought us here-and what can happen ultimately when 2 sides with 2 varying views cannot find a way to compromise and resolve.

"The world will little note, nor long remember what we say here, but it can never forget what they did here. It is for us the living, rather, to be dedicated here to the unfinished work which they who fought here have thus far so nobly advanced. It is rather for us to be here dedicated to the great task remaining before us—that from these honored dead we take increased devotion to that cause for which they gave the last full measure of devotion—that we here highly resolve that these dead shall not have died in vain—that this nation, under God, shall have a new birth of freedom—and that government of the people, by the people, for the people, shall not perish from the earth."  President Lincoln would be ashamed. This is not what the forefathers invisioned. Perhaps it is time we become the forebearers and make this nation great for all that live here so that we can pass along the bounty to those who do not- for a country without foundation does not have a place to stand either against it's foes or next to it's friends.

Recap

4 mutants
3 primadonnas
2 organ insufficiencies
1 tired mama

One of my dear friends just had her second baby. Or as we call it in our house, back up #1.  I remember when I had my second baby. We had no money, my husband was never home, and all I wanted was to sleep through the night. 10 years later, we have money- but it's all spoken for, my husband is rarely home and for the love of all that is holy- is 8 hours of uninterrupted sleep too much to ask for? 7 would be fabulous.  I would settle for 6 and this week- would probably feel refreshed with 5.  Let's face it- work quality suffers with inadequate rest time, and as anyone can tell from the rag a muffins running around my abode- quality has indeed suffered.

When we used the slogan "we put the fun in dysfunctional" - I'm pretty sure it was in reference to the family dynamic- not serial organ malfunctions. Yet here I am with one kid who has no adrenals, another whose pancreas has decided to abandon ship, one who thinks she is the family pet and one who thinks if she pretends to be in another family long enough, they might actually keep her. Care and feeding of said creatures is a challenge on good days. Now it has taken on a life of its own.

I hate diets. I'm not a fan of working out. I figure all these added pounds will give me a leg up someday if I have to go through chemo. I haven't dieted since I was 18. I have tried more diets than I care to admit, and there is something seriously wrong with the fact  that they were all before I was 18.  My dad was a big man. From what I can tell, I got my athletic side from him. And my love of food. I know what reasonable portions are- but really they are just so reasonably small.  I like to cook. I'm not a great baker- baking requires a precision that I am not comfortable with. When I cook- it's all about how it tastes-I'm a pinch of this and a dash of that kinda girl.  I hate recipe exchanges- I actually made one up once. A friend called and said you didn't really mean so much of this did you? Sure I did- if it doesn't taste right- add a whole bunch more of all the other ingredients and it will be just fine. Now I just pass along whatever Betty Crocker recommends. I'm one step away from being poetic and submitting recipes for serenity but I seem to be lacking some key ingredients.

One of the approaches to type 1 diabetes management is carb counting. In theory, it is pretty straight forward. Except for the fact that IT IS KILLING ME. They even gave us the uber scale of justice. It has more functions than my phone and I'm pretty much afraid to touch anything but the power and zero buttons. Thank god I have a scientific degree of some sort or I may not have known what the zero button was for. We also got the complete set of measuring utensiles. The darn things could have their own zip code. Really if you have a 1 cup and a 1/2 cup- do you need a 1 and 1/2 cup and a 2 cup measurer? I do like that the little spoons actually have dash and pinch measurements on them- so now I can say I'm a 1/8 teaspoon and a 1/16 teaspoon kinda girl.

So the first couple days of diabetic cooking, I tried to familiarize myself with the calorie king carb counting handbook. Basically if we were eating anything processed, packaged or from a well known restaurant- it is easy to find in the book. Well newsflash kiddies- if it's processed or packaged- it's got the carb count on it. And that's not the stuff we really need to be eating anyhow. It's the tricky stuff I need help with- like cocktail sauce that comes with the Costco shrimp(24g per 1/4 cup btw) or our neighbor's birthday cake(guess and guess again). I also learned how unlikely it is for eateries to actually have nutritional information on hand.  Mcdonald's has the carbs written right there on the wrappers.  I was surprised how hard it is to obtain carb counts considering how big the low carb/no carb diets were a few years ago.  I am starting to get why all those health food nuts are so ornery. It's a pain.

So night 1, I make meatloaf, mashed potaotes and carrots. A fairly high carb meal- but the plan is to match the insulin dose to the actual carbs moreso than restrict diet.  That is what we call management. SO I measure. I weigh. I calculate. I go online and double check the nutrition facts.The kids want to know why I have tears, I blame the onions. This is soo not me.  I can do this. Except 2 hours later, and we take lil man's sugars and they are high. Grrrr. What's the point of spending all the time measuring and being precise when the result is anything but?   Then tonight was our neighbor's birthday and we were invited over for cake and ice cream.  I tried to balance that with a lighter dinner of shrimp and salad. The cake and ice cream comes out to be like a days worth of carbs. But the point is to not restrict him so he doesn't feel the need to sneak later. He is all impressed that his dinner is under a unit's worth of carbs and I inform him that that is good because the cake is going to knock it out of the water. He starts laughing hysterically. Sleep is a beautiful thing- if you get it- please cherish it- if you don't need it- please give me your number, I have 4 mutants I'd like to introduce you to.  Somewhere between a  fish out of water and out of the ballpark morphs our new catchphrase.

Needless to say I was very surprised 2 hours post cake when Phillip came to me and said he was feeling low. That's not what I was thinking when I thought he was going to knock it out of the water. But he was low and got a snack. He angled for more cake and ice cream- but settled for goldfish. I'm not entirely sure but I think there is irony somewhere in all of this.  That or I am actually capable of counting carbs. Nah.

Wednesday, April 6, 2011

Birthdays




The Wubbulous World of Endocrinology

A few days ago, I sat by as all  3 pediatric endocrinologists bantered on about how fascinating it was to see a pancreas just disappear. Yeah flipping frig frog HIGH larious. I guess I'm a little less fascinated being the owner of the new 24 hour ops world of confusion regarding blood sugar, ketones and insulin due to aforementioned vanishing pancreas. It does however give me a fascinating appreciation for the human body and how it manages to keep running after all the torture we put it through. I had just about shut out the banter when one doc turns to me like a kid with a new toy- wanna see it?   Um, yeah.

There it is. Now it's gone. See, here is the pancreas slightly post trauma- somewhere Mayish 2008- the doc points to the screen. I look at the MRCP(MRi with Contrast of the Pancreas) and am fascinated at the clear resolution of my son's pancreas. It looks just like all the artistic renderings in the books of knowledge I was trying to cram into my nugget.  The only thing off is the pancreatic duct, which was still obviously dilated- or dilatated as the docs say- don't ask me why- probably some goof ball who likes to make up new words- I don't know anyone like that. To me the pancreas looks like a chicken tenderloin- a nice round head that tapers to a point.  He pulls up the MRi from last week. It is gone. All you see is some vein and he points to a bit of the head that is still hanging on. It's creepy. I guess in some circles it is fascinating- it's too soon, too soon.

It occurs to me how different each of the endocrinologists is. The senior doc was the one who tended to Phillip on the ward as we were introduced to the finer elements of diabetic treatment. We talked for hours about how fascinating the case was- and by we, I mean he. In his mind, Phillip is a fascinating case study of why- but the treatment is still standard.  Everytime I tried to ask a question or offer input, he switched topics or talked right over me. Although knowledgeable and friendly, I can't say I was disappointed to find his retirement was less than a month away. The other endocrinologist we have met a couple times and is very upbeat with a booming voice and comes highly reccommended by staff and patients. He is a bit more proactive with treatments. Our endocrinologist is soft spoken and knowledgeable. She is one of those docs that you wonder how exactly fits all of that information in her head. She has a good bedside manner and you definitely feel like she is taking her time and is thorough. As I get to learn more and more about the field of endocrinology, I realize what a special brand of doctor this is and what a complicated field it is. That and it deals with way too much chemistry and biochemistry for my liking. They deal with what we all intuitively know- hormones are some whacky shit.

I really like our endocrinologist. She takes her time to listen and process what I tell her and takes into consideration the emotional and non quantifiable issues I have with my kids' treatment. We met her 3 years ago because Phillip busted his pancreas, we came to know her through Lily's adrenal insufficiency and now we are going to get to see a lot more of her. This is the part where it becomes important that both my kids  and I are comfortable with her. I know that it may take 10-20 minutes waiting in the waiting room for our appointment. I also know that she will stay with us until we feel comfortable with the visit. She commands her own schedule- which obviously drives the front desk staff nuts- but I like knowing she knows when and who she is seeing.  Every visit, she takes the kids to get an accurate height and weight on her special scale majiggy. It didn't surprise me that the scale was located in a closet across from the exam room, it made sense. Especially since there is such a premium on square footage. There were tons of pharmaceutical and diabetes related care packages and piles and piles and piles of books.  It did however surprise me when she kept referring to it as her office. At first I laughed at the joke- like when the kids have a questionable potty issue and I usher them into- my office. Or when I am sleeping and they have a bad dream- again, they get to enter- my office. I actually appreciated the dry sense of humor. Until about 6 visits in, when I realized that we were actually in -her office. On careful examination- the piles of books were not uniform- there were some on a chair, which was actually in front of a desk- also completely covered in books and files,  next to a book case which was almost totally obscured.  Some might run out of there in terror- not me. I liked her even more. She's human. And obviously reads, a lot. I like a good bedside manner, but I don't need her to hold my hand- I have a support system for that. I like that she takes my well being into account- a sane mommy is needed in the partnership , but I need her for her extensive knowledge on causes and treatments for the diseases my kids have. And I know for sure if I ask a question she can't answer( there's only been 1 so far) she definitely has the resources to find it. And she did- somewhere in her office.

Monday, April 4, 2011

A new IDEA for school

A little over 6 months ago, I went through the rigamarole of trying to get Lily's life saving medications allowed at school. Since there is no precedent, no previous case of adrenal insufficiency- hydrocortisone is not on the formulary. It took weeks of phone calls, meetings, research and canoodling to get her meds in the health room. Even then it was strictly stipulated that although her shot could be kept there- legally there was no one there who could use it. yay.

A few months into it- I kept getting calls from a new health aide at school. She had Lily's number and wasn't afraid to use it. I would hop in and assess the crisis. By the 3rd call, I felt perfectly comfortable letting her give me assessments via phone of Lily's condition which could aptly be summed up as "attention seeking". She told me that she had daily visits with Lily, but unless she had the symptoms I told her to watch for, she usually sent her back to class. Finally, someone who knows what they are doing.  For every door closed, there is a window- and Ms. Stacey lets the sunshine in to an otherwise crappy situation. Most of all it's nice to feel comfortable with the person who is the liaison between your child's health at school and the school.  She knows the rules, she identifies that many of them lack common sense, and she always considers the childs needs. I like that. I call it common sense. There's an idea.

I am not the type of parent who gets all weepy on the first day of school. I love my kids. I miss them when they are gone, but school is a normal progression. I know parents get stressed about the what ifs and their children's welfare at school. And they have normal kids. without life threatening conditions. Even after I got Lily situated- I worried she would get sick, but I felt comfortable she would bring up any needs she had and demand to call me. This morning was so hectic, I had but a moment to pause and contemplate the irony that I packed 2 emergency care boxes- one for Phillip's classroom, one for the healthroom-and promply shoved them inside a Big Island candy bag to transport to school. I don't know- I guess I could have used the Baskin Robins bag. I was slightly surprised then today when I paused after a 20 minute brief with Phillip's teacher and another 20 minutes with Stacey and 10 minutes with his counselor- the sheer panic I felt walking to my car. The what ifs decended on my chest and started pecking away like a hoarde of hungry birds. So this is what it's like. I do not like this at all. I know it will get better. We have already settled into a routine.But this is pretty stifling.

I sit and marvel that I had all the information on Lily's condition- I felt comfortable and was ready to educate the school with a clear matrix of possibilities and solutions- and it took so long to get it all in place as a patch job to make sure I was comfortable with the school's accomodations. Phillip has been diagnosed for a week- I take him into school and because of an IDEA(Individuals with Disabilities Education Act)- every one does everything to accomodate us. This means that he should not be discriminated against because his pancreas doesn't look or work like other kids'.  It means that his life saving medicines can be kept at school and have to be used. It means that enough kids and their parents have continuously butted their heads against the same walls I did with Lily- that legislation was proposed. I am grateful to not have to bang my head against the wall for this reason. The irony doesn't escape me. Too bad there's not a candy bag somewhere to shove that in. I might be able to find one if I had the time to look. But for now I have to wrap up- it's time to run back into school to check on blood sugars.

Friday, April 1, 2011

Captain Pancreas, Position Open in Management

A friend suggested that we needed to update lil man's title- Pancreas boy is for sidekicks- Captain Pancreas would be more fitting for a hero. I have to agree. We just went from waiting for impending doom, to managing it- therefore I now knight thee Captain Pancreas. Another friend suggested a special cape, yet when I consulted our fashion designer- she adamantly declared  "NO Capes!"

Somewhere in between planning Kiera's Birthday sleepover( which somehow always coincides with some medical crisis) and learning how to manage Phillip's diabetes  and Phil's next TDY- starting Saturday- I try to find the time to feel overwhelmed.  The only symptom that presents is a leakage of a clear liquid from my ocular cavities during all times of calm. There are only about 2 of those a day and they last less than 5 minutes each, so I guess I am doing ok.

Captain Pancreas and I will fly into the facility today for a routine systems check. I know it will get easier and more second nature- but right now it is akin to having a baby.  Get up- check sugar- count carbs in meal- administer shot- wait 15 minutes- eat. 2 hour reprieve. check sugar. repeat for every meal/snack- and end the day with different shot.  His sugar levels are still high, so we will be tweaking.  In between I try to coordinate what needs to be done at school via talking with his teacher and a public health nurse and check on Captain Pancreas' mental health. His coping mechanism right now is video games. He was coping really well until a particular physician tried to be peppy and explain he could still do anything he ever wanted to do, except be in the military and fly commercial planes. That was the first time I saw the light flicker in Captain Pancreas. His alter ego planned to go into the Air Force as a cover and fly jets- like his dad. Times like these I begin to wonder exactly how many times ones heart can break before it goes numb- right now some numb would be welcomed- just for a little while.

I know everything happens for a reason. I know he has more gifts than we even realize. I have no doubt he will do great things and make a vast difference in many people's lives. He already has in ours. It hurts to see your child's dream crushed. And not in the- no you can't play in the playground or no we don't want you to play with us kind of way. We are talking dreams and ambitions and hopes for just blending in or taking flight. I know all of it will be rectified in time, but for this time- it breaks my heart.

So when a 350 lb chairbound man at the park tried to commiserate that he too has diabetes- I send my child off to play and tune out the drithering because you can't compare living a shitty lifestyle for 50 some years catching up to you -to a child's diagnosis. Phillip's diabetes won't reverse if he eats right and gets some exercise. It will be easier to manage and he might get to take less insulin- but he didn't get diabetes because he feasted on fried meats with a sugar sauce and 3 different sides of starches for 3 meals a day for 50 years. Yep, this is progress- I have moved on to the anger stage.

On the positive side- which is a bit cloudy and slightly obscured at the moment- for every closed door there is an open window. And sometimes to get out that window- the only way is to fly and I have no doubt at all that Captain Pancreas has the wings to do it.

Tuesday, March 29, 2011

Pancreas Boy and the Case of the Vanishing Pancreas

Yesterday was a day of revolving door meetings with nurses and and doctors regarding the whosits and whatsits and howsits of diabetes.

The who: Pancreas Boy

The what: Type 1 Diabetes

The how: autoimmunity?  trauma?

There are 2 main types of diabetes. Phillip's is the most common in children, yet the least common overall. The suspicion is that during the battle of skateboard v pancreas- the blow that the pancreas took started a chain reaction that ended up with Phillip's immune system targeting pancreas cells as damaged and starting to get rid of them. Now if we could just nail down these premises for targeted cancer therapy.....or hell I'm gonna go out on a limb and call for the actual cure of diseases.

The docs went back and reviewed his previous scans and saw the deterioration and that was why we were monitoring his sugars. The questions are why now? and what is the mechanism?  We may not find the answers, but will get him into a couple more scans to see what's going on. None of this stuff affects the course of treatment- all that is standard for type 1 diabetes. Studies have shown that in cases where the pancreas has been pummelled- sometimes it results in diabetes, sometimes not.  Since it is a pretty rare occurrence- again not a lot of data on that. 

Pancreas Boy faces each and every challenge and keeps us in stitches- fortunately not literally.  Yesterday his IV was sore and creating difficulty for him. That is to say that when he bent his arm to play video games - the darn machine kept beeping. We discussed with the nurse either moving it or getting rid of it altogether and she put in the call to the doc for approval. We then transitioned the conversation to taking blood glucose levels and that Phillip could do it himself and even give himself the insulin shot.  Phillip apparently reached an intense moment in Angry Birds Rio and missed the transition. He hardly paid attention as the nurse removed his IV.  SO when she asked him if he was ready to poke himself he dropped the game and looked to me in utter panic- I don't want to do it.  Phil gives him a confused look and asks why not- he did it earlier.  Phillip shakes his head and says- no the guy in the ER did it.  At which point we all realize he thinks we want him to start a new IV on himself. Phil doesn't miss a beat and says well- if you're not ready- you're not- how about taking your glucose level? Yeah I can do that- that's easy. I even gave myself a shot already.