Friday, March 3, 2017

3/4 Doctors and Three Things...

If you're married to someone in medicine, you're never sick.  Nothing is ever wrong.  Me:  "Man my throat hurts."  My husband:  "Well, the clinic will just do a quick strep and they're usually negative.  So unless you have it for a really long time or have a screaming high fever, they can't do anything for it, anyway."  Me:  "My side hurts so bad."  Husband:  "Your appendix is gone and so are your reproductive parts.  Stomach pains are common and hard to diagnose.  They won't do anything for it."  Me:  "Man I've been coughing for weeks."  Husband:  "It's bronchitis.  It's viral.  They won't give you anything.  No reason to go in."

You get the picture.

On the rare occasion something more serious pops up, protocol in our house is as follows:  Level One:  Ignore health problems until they're really bothersome.  1)  I have a special needs kid, 2)  I'm a caregiver, 3) If I was up washing urine-soaked sheets three times during the night and scrubbing stool off the wall and floor, I tend to ignore my personal health issues.    Level Two:  Ask Husband what he thinks diagnosis is.  (It pains me to admit, on the occasions I want to prove him wrong and I go to the doctor anyway, he's 99% correct.  He should've been a diagnostician of some sort.)  Level Three: Husband asks someone at work what their opinion is of said situation.

So, if you're married to someone in medicine, frivolous doctoring just doesn't happen.  Secondly, if you have a special needs kid, frivolous doctoring doesn't happen.  We all know that going to the clinic is just an invitation to a swimming pool of germs.  As much as possible, we avoid exposing Mas to any extra germs.  (I still open doors with my sleeve over my hand or with my elbows.)  Thirdly, the more you find out about about illnesses and treatments the less you go in.

So, it was after a lot of ignoring and googling and questioning that I found myself lying on a table a few months back, waiting for a radiologist to enter the room and perform a biopsy.  The ultrasound tech had already done her part, and I was prepped and ready.  When the radiologist breezed in, I immediately had good thoughts.  He looked like Joel Fleischmann from Northern Exposure.  Good sign.  And, he was a 1/4 doc.  Had to be good.

I categorize docs by where they are in their career.

A 1/4 doc is through school and just stepping out into their career.  They're hungry.  They won't get every diagnostic dart on the board but they'll throw more darts.  They're broke and most of them are paying off mountains of debt so they try harder.  They're closer to new breakthroughs and still remember their lectures/classes; they paid attention because they were tested on those things.  They haven't seen a good sampling of all the diseases and disorders yet, so they're always looking and listening closely, hoping to find them to check them off their life list.  When they make their diagnostic guesses, we question them because they deliver their guesses tenatively.  That is a drawback.

A 3/4 doc is past the exciting part of their career and not ready for retirement.  They no longer have a desire or interest in learning; they know it all.  They don't go to conferences to learn; they go to golf and cheat on their wives.  They are no longer interested in patients-they only see dollar signs.  At this point in their careers, they are either contributing heavily to a mutual fund or paying for a lake home or two.  They have taken their Dale Carnegie courses and are good at schmoozing.  (How do you think they learned how to bang their nurses and techs?)  When they make their diagnostic guesses, we don't question them because they deliver their guesses in an envelope of arrogance.  That is to our detriment.

A 2/4 doc can go either way.  I've seen good and bad examples.  They're in the middle of their career.  They're either somewhere they like and they're dabbling in learning a bit more all the time or they're feeling stuck somewhere and therefore feeling resentful and not learning anymore.  They diagnose the easy stuff and push off the difficult cases to the 1/4 docs; quick to insult when the 1/4 docs miss the dartboard.  Or, they occasionally find the nut and diagnose the weird case and pat themselves on the back for it.  The good 2/4 docs are hardest to find.

Now, over the years, we've seen more than our fair share of doctors.  Mas remains undiagnosed, 19 years on, so we've seen quite an array of specialists.  We've seen primary care docs, PA's, NP's, Developmental Pediatricians, Pediatric Endocrinologists, Neurologists, Pediatric Neurologists, Opthamalogists, Pediatric Opthamalogists, Orthopedic Surgeons, General Surgeons, Geneticists, Physical Therapists, Occupational Therapists, Cardiologists, Pediatric Cardiologists, ENT's, Pediatric ENT's, Neurogenetic Teams, Craniofacial Teams, Dentists, Pediatric Dentists, Orthodontists, Gastroenterologists, Pediatric Gastroenterologists, etc.  The list is long.  And we've seen it all.  We've been to appointments where we've entered the room and the doctor did not even greet us; sat in silence for 45 minutes...complete silence...and just watched Mason.  We've sat through hour long appointments where the specialist spoke to us the entire time and stared at the wall.  We've been to appointments where they've called him by the wrong name, talked about diagnoses he didn't have, wanted to test for things that have already been ruled out.  We've been to team appointments that have lasted an entire day.  More than once.  We've seen some shit.

But a pretty common thread amongst all these docs?  Is where they are in their career.

I tend to like the 1/4 docs and the 4/4 docs.  You can have the 2/4 and 3/4 docs.  The 1/4 docs are hungry, anxious, earnest, eager to please.  They're not always right, but they're always trying.  They don't have all the answers, but they'll keep looking.  The 4/4 docs are hard to find.  But they have been through battlefields.  They listen, they're intelligent, they're wise.  They can level a nurse with one stern look over their glasses.  They can cut through red tape like a warm knife through butter.  Love me a 4/4 doc.  But good luck finding one.

So imagine my surprise when my Joel Fleishmann breezed into the room...a 1/4 doc...but with the demeanor of a 3/4 doc.  He introduced himself and started giving me a primer on the lymph system...arrogance dripping from every word.  He wasn't just speaking down to me, he was literally speaking down to me.  Then started telling me I shouldn't be there.  Then told me there was no reason for me to be there.  Told me he didn't consider my lymph nodes to even be enlarged, by his standards.  Then he told me the test would be too close to my jugular vein and he didn't know why I would want a test done so close to my jugular vein.  Then said after all the things he taught me about the lymph system, and knowing all the things he's told me about his beliefs, what would I choose to do?  Would I still choose to do the test?

As I sat there, lying on the table, prepped and ready for the test, words were gone.  I started to speak, but nothing came out.  I ran my tongue over my teeth, feeling my crown where the spiky tooth indent was, and wondered how to proceed.  Various thoughts ran rampant.  He is no Joel Fleischmann.  He is no 1/4 doc!  What the hell?!  Wonder what the ultrasound tech is thinking right now.  Will insurance still charge for this?  My doctor ordered this test; I didn't ask for it!  

In the end, I decided anyone with that much ego did not need to be inserting a needle that close to my jugular.

But, I realized to to your doctor, you will always be three things:
1) Age
2) Weight
3) Profession

He read my chart far enough that morning to see my:  age, weight, and profession.  47, overweight, (I've lost a lot of weight, but still overweight by his standards, I'm sure...) and a stay-at-home mom.  That's all he saw.  All he read.  (By the way, "Joel" didn't read any of my medical history...which was discovered during my cross examination later!!  He made a decision on whether or not to carry out this test based on nothing other than a cursory ultrasound; no reading of my chart and no reading of my history whatsoever.  But I digress....)

I should insert here how little I care about ego when it comes to doctors...if they're good.  If a doc deserves to be an egotist, be one.  But earn it.  I have no problem with ego.  If it's deserved.  Arrogance is another matter.

Doctors don't care a stitch about your IQ, your life experiences, your real world situation, whether you're a really nice person, whether you're caring for your dad who is in end-stage Alzheimer's or your aunt with Stage IV cancer or whether you've rescued 39 dogs...you will always be 3 things:  age.  weight.  profession.

He had no idea that I knew about the lymph system.  Or that I had a special needs son at home, and had for 19 years.  Or that I had a CRNA for a husband.  Or that I had a daughter in pharmD school.  Or that I've been reading medical journals for 19 years.  Or that I used to have to look up words like "hyper" and "hypo" and now I've moved up to looking up words like "stellidate irises" and "repeat expansion disorders."  Or that I know about polymicrogyria, and enlarged ventricles, and micrognathia, and retrognathia, and sub-ependymal cysts....Or that I'm not an idiot.  Or that I've been a patient and parent advocate for my son for the past 19 years.  Because he only saw those three things.

We are all reduced to those three things.  And while it's a sweeping generalization to reduce all doctors to a fraction, it's likewise unfair to reduce all patients to three criteria.  But it happens all the time.  It's our job to be vocal and let them know about things #4-39....even when the doc has no interest in hearing it.

I'm usually quite good at doing that.  I've been doing it for years with Mas.  We had a 'surgeon' who wanted to yank his first tube out of his stomach in the office, and then replace it with his Mic-Key button.  (G-tube)  Well, I knew how big the apparatus was under the skin and I said, no way, that's going to hurt him.  The 'surgeon' said, "He isn't aware enough to feel pain; he won't have any idea what I'm doing."  That was my first foray into advocacy.  That day.  I demanded they do it under anesthesia and then demanded this jackhole not be involved in any way.  (Of course, Howard told me he was probably not only involved, but probably the one that did it...better not to know people involved in medicine sometimes...)  But, I still had my "I am advocate; hear me roar!" moment that day.

For some reason though, it's far easier to advocate for someone else than it is for yourself.  And as I look back on this interaction with this doc, I'm wondering why it was so hard to find the words to let him know I wasn't an idiot.  To let him know I know about the lymph system...I know about doctors...to let him know I was on to his particular brand of arrogance.  But, I didn't.  I sat there quietly and drove home quietly.  I let him think he knew me based on #1, 2, and 3.

Don't let people base their judgement of you on 1, 2, and 3.  Even busy docs.  Maybe especially busy docs.  We are more than the sum of the three top things about us.  The three most mundane facts about us.  I learned a lot that day, about self-advocacy and being able to spot 3/4 docs, but I also learned that we are all worth advocating for-all of us.  Mas deserved to have a humane removal of that tube back in 1999; just as much as I deserved to be treated with respect a few months ago.  Medicine and respect don't always walk together hand-in-hand, but they should.  Don't be afraid to remind your medical professional of this the next time you are seen.  I let him get away with being a jerk...but more importantly I let myself get away with not standing up for myself.  That was harder to get over.

Tuesday, September 20, 2016

Meet Me Halfway

As I would stare at the goldenrod clunky old phone, dominating the sunflower wallboard in the kitchen, willing it to ring, my impatience rising, my senses would sharpen right before the actual ring.  The 'hello' was perfuctory, as I knew who was on the other end.  Kelly.  "Meet me halfway?" She would ask.  "Yep," I would reply, then ask quickly-"leaving now?"  "Five minutes."  "K."  I would hang up the phone.  I never waited five minutes.  Not once.  I sometimes made it to three.  Impatience was ever-present in my young mind.  I would jump on my well-weathered Huffy bike; my used-to-be-red tape now a barely-there-pink on my handlebars not even getting touched most of the way across town, since Kelly had taught me to ride "no-hands."  I would make it to the tracks before her, then I would double back to the school, then back to the tracks, then back to the school...until I saw her.  Then I would meet her and we would ride.  No greeting.  Just start riding.  Sometimes we just rode around town over and over again.  Sometimes out of town-to Marion corner, to the creek, to the Maze, around the section; it didn't really matter.  What mattered was the ride, not the destination.  Don't remember ever getting tired, or ever having bike problems.  We just rode.


On the days we didn't ride, we walked.  Same protocol generally; we would meet halfway.  Sometimes, I would walk all the way to her house, which was really my second home.  We would take off for walks that would last an indeterminate amount of time...talking about Important Things...marching band, boys, school, the bus ride, teachers, what the inside of that house must be like as we walked by it, the mean dogs in town, what we were doing tomorrow.





In a town of 80 people, memorization of the houses, (and the yards, the trees, the bushes, the flowers, the dogs, etc.) was not difficult...and it was a great way to combat boredom.  Especially before we were able to drive.  There were many houses we never saw the inside of...and we would still like to explore.  We also talked a lot about what the town must have been like in the past.  The town had been much larger years and years before, but had been ravaged by fire, and had never recovered.  It was always interesting to consider what things were like before.

We also used to walk the railroad tracks.  They were active tracks, and sometimes while you were walking, you'd feel the rumble beneath your feet and you'd know the train was coming.  We'd wait until we could see it, and then we'd jump down into the ditch and watch it speed by.  Always a rush.  Oftentimes a group of us would gather up by the tracks where they crossed by the ball diamond and put pennies on the tracks, waiting for them to be flattened.  Sometimes we'd see people sitting in the empty cargo cars; they would look at us as they went by-probably wondering about our lives, while we sat and wondered about theirs.

The train track was right next to the ball diamond, which was a hub of activity in the summer.  Many softball teams were organized by all kinds of organizations and clubs-large and small-and they would meet at fields all around the little towns to play in the evenings.  I loved it, because the ball diamond was right by our house, and those big ol' lights would turn on, and the cars would come into town and there would be something to do, and people to watch and noise and activity and also there would be people from other towns flooding into our town...which didn't happen very often.

Right next to the ball diamond, was 'the trees.'  There was a big stand of trees where the Monroe kids would build forts.  More often than not, Kelly and I would build a fort, and end up trekking back in there a week later, to find the guys had taken it over or build over it...or, gasp....knocked it down.  Which usually meant hunting for one of their forts, in order to knock that down.  Those woods were our playground.  They were right next to a gravel road, but once you got into the first part of them, it was dense, and quiet.  There were quite a few deer in there, and also a lot of owls.  It could be a creepy place.  Once the sun started to set in there, you would want to start finishing up and head out of there.

On the opposite end of town was the creek.  That creek saw a lot of activity from a lot of us Monroe kids.  Kelly and I used to go hang out under the bridge there when the water was low, listening to cars drive over our heads.  When we were younger, we would go catch creek chubs and crawdads there.  Sometimes, it would be down to just a trickle....truly a creek.  Other times, it could be a rushing torrent of water, and we would do downright dangerous things while we were there.




More often than not, at the end of the day, one of us would end up spending the night.  My house was a bit smaller and my room didn't have a door, so we usually stayed at her house.  I always considered her house an adventure.  Often, her brother Bryan and Kelly and I would make Totino's party pizzas and kool aid and eat together in the kitchen, listening to records play on the hi-fi.  We would sit out on her back steps in the evening and watch the sun go down; discussing Life while I gleaned as much information as I could from her three-years-older, Very Experienced mind.  Those steps heard many a conversation.  Once, during a total downpour, the streets were literally covered in nightcrawlers.  Bryan and Kelly and I went on a massive nightcrawler hunt...followed by nightcrawler races!  Which were a first for me.  (Never to be repeated, I don't think!)  She also had a back porch right off those steps, which saw many card games, visits, and probably unwisely, a lot of Ouija board experimentation with her older brother Brad and some other neighborhood kids.  We dabbled in all kinds of things we were interested in...trying to feel/taste/touch the world all around us that we felt we weren't able to experience while living in such an isolated existence.

Right off the kitchen was their bathroom, where Kelly taught me how to apply makeup-and I watched in awe as she applied her mascara with her mouth open and her eyes wide-asking her a million questions along the way.  I used to love to watch her do her hair-because she would always get angry at it and things would get thrown-and I would laugh and laugh!  I always thought she was very sophisticated and classy-three years was a huge difference in age, after all-so anything she said, I listened to.

We didn't reserve our fun for her first floor.  Her second floor had three bedrooms, and her brother Bryan's room opened onto a very nice, fairly flat rooftop...a convenient place to layout in the summer, sit and visit, and also to have bottle rocket fights with the neighborhood boys.  Her mom hated it when we were up there-rightfully so!-but we loved it.  It felt very dangerous and exotic and we always felt a little reckless up there.  For two 'good girls,' it was nice to have a place to feel a little bit bad.

Speaking of neighborhood boys...there was a crew of them.  Affectionately known as "The Monroe Boys."  My brother, Kelly's brother, Tim, Chuck, the list is long...these boys rode bike around town, later drove cars, motorcycles; went hunting, went swimming out at Lake Vermillion, went out carousing on Friday nights...the list is long!  Most importantly, though, is that they had each other's backs.  And all of the Monroe girls' backs.  We really were family.  And although we were close, you didn't date.  That would be like dating a sibling.  It didn't happen.  We were like one big gang.

Monroe was its' own entity.  Our town was too small for their own school, although for years we had Kindergarten and then the middle school in Monroe.  And then they decided that was crazy and moved it all to Marion, six miles away.  (Enter years later, when middle schools became 'hip' again...guess who was wishing they had left their setup alone??)  So, we all had to ride the bus to school, until we were old enough to drive.  Kelly and I waited years until we were able to score the coveted back seats.  That was an achievement like no other.  Riding the bus was an experience.  We had some fantastic drivers, and some not-so-fantastic drivers.  I remember when we all went home and told our parents about one driver, who went down the 'big hill' on the gravel road a little sideways once.  No one believed us.  Found out later he was a big drunk, and was fired.  The parents believed our reports after that.  When the roads were bad, we were late to school more than once.  "The Monroe Bus" kids would walk into band late fairly often in the winter, usually freezing cold and with wet feet, from standing out in the ditches in ankle-deep snow, waiting for our bus to get there.  You didn't dare miss the bus, because our moms did not want to drive us in.  So you went outside on time, even on the bad days, knowing you'd be waiting.  So, in the end, the Marion kids were the 'city kids'-even though their city was only a population of 600-and we were the 'Monroe kids.'  Always.  To this day, really.  The distance may have only been six miles, but in reality, it could have been six hundred miles, as far as the disparity between us.

Once the Monroe school was empty, it sat empty for years.  That never stopped Kelly and I.  We would regularly become Urban Explorers and set about to find a way into the school and spend hours investigating every nook and cranny.  We would go up on the stage, digging through old costumes and pulling open the huge, dusty curtains and pretending to put on shows.  We would go into the classrooms and dig through the old teacher's desks, looking for treasures.  We would wander the halls, freaking each other out over the echoes and shadows and the long, reaching, warm afternoon light that would find its' way in through the grown over vines covering the dirty windows.  It was really a dream for two girls that loved scary movies and creepy stories.  The interesting days were when Bryan and Tim would sneak in ahead of us and hide somewhere and jump out and shorten our lives by a few years....those were the times we wondered why we did this.




Sometimes, the whole gang of us Monroe kids would do things as a group.  Not really ever an organized thing, but we would go for walks on the gravel road south of town, or we would all go explore the dump and look for cool things to recover.  Sometimes we would set up things for the guys to shoot.  Almost all of the guys from Monroe carried guns in their trucks.  Around town, and also to school.  And it never seemed at all out of the ordinary.  Still doesn't.  When the old gas station and the old store were still in town, we could stop in for snacks or bottles of pop before our walks.







Being a resourceful town, though, the school didn't sit abandoned all year long.  Once a year, the town held a carnival at the school, and they would do it up right.  Each classroom would have a different activity, like a cakewalk, games, bake sale, etc.  They would hold a play in the gymnasium, (with a real wood floor, might I add...) with games for everyone.  We used to love that night.  Everyone would come out and have so much fun.  I should mention that baked goods in those parts weren't just baked goods.  They were Baked Goods.  The women around this area knew how to bake.  Our church cookbook was something of a coveted item.  People still try to hunt it down to this day.  So, winning at the cakewalk back then was truly a delicious feat!

Speaking of church, there were 2 churches in Monroe-a German Reformed and a Dutch Reformed.  So, we grew up Reformed.  Mom always took us kids to church.  I can't say that I enjoyed it; that would be a lie.  Kelly didn't go to our church, which made it extra excruciating.  I spent many sermons studying the Last Supper painting and the Christ at Heart's Door painting...and also coloring in bulletins.  Church is where I crafted my doodling; learned how much I hated dress clothes; how noisy candy wrappers are; and all about class warfare.  Even though our church was quite small, there was a definite hierarchy between The Best Christians and The Not So Best.  I was always in the not so best category...and my Sunday School teacher made sure I felt like it.  She was an evil woman.  Looking back, I think she disliked my free spirit.  But, she did a great job turning me away from organized religion.  What really stirred a fire in my belly at church, was when the organ would fire up.  THAT was why I was there.  Open up that hymnbook and let's go!  Four part singing was what our congregation DID.  They were masterful at it.  We had singers that would make you rise up and say, "Hallelujah!"  I still remember joining choir and learning to harmonize.  The hymn was, "Something Good Is Going To Happen To You."  I learned the alto part.  Singing harmony that first time was like taking heroin.  I suddenly felt like I had a purpose on this great earth.  After that I became even more interested in our hymn books.  Suddenly, I could sing the baritone parts...the bass parts an octave higher...the soprano parts an octave lower...and then I would start to make up second alto parts.  Music became the Thing that got me through church.  I felt like I was really worshipping when I was singing, or later, playing trumpet or piano.

Summers were the hardest season to sit through church.  Because I knew everyone would be headed out to the lake.  The minute church was over, we would head home, change clothes, gather up our things, and head out to Lake Vermillion.  That scene was happening back in the day.  My aunt would bring her tractor tire innertube, and us kids would ride in the back of the pickup.  Kelly and I owned that lake.  We would spend the day swimming.  All afternoon.  The water was mossy and nasty, but that never stopped us.  When we got home, there would be a moss outline of where your swimming suit had been.  But it didn't matter.  It was the lake!  Marion had a pool, but the Monroe kids always wanted to hit the lake.  That was our place.

Kelly taught me to waitress at the cafe in town.  Being such a small town, you wouldn't think we'd have much of a cafe.  You'd be wrong.  Our cafe rocked.  The women, (the same church women who knew how to bake/cook) knew how to make amazing home-cooked meals.  And caramel and cinnamon rolls the size of your face.  And portion sizes that would make your head spin.  Leland would make thick malts that you had to use a spoon to eat.  People would come in from towns all around to eat at the Monroe Cafe.  We would regularly run out of rolls in the morning.  People would ask, how do we make sure we get rolls here?  We would say, get up earlier!  We would serve 120 people at noon-sometimes with only two waitresses.  I learned how to be organized and how to memorize at that job.  My mom cooked there, my aunt Sue also waitressed there and showed me the ropes, and every woman in town who I looked up to worked there at some point or another.  Tammy and I cooked there at night and she showed me how to short order cook.  I learned a lot about people during my cafe years.  The good, the bad, and the ugly.  Kelly and I would work together on occasion and it was always fun to finish a shift, get home, and pull the tips out of your pockets...stacking up the quarters and excitedly adding up your money...it all reeking of deep fryer-especially if you were lucky enough to get some dollar bills.

In marching band, Kelly played percussion.  She was just a tiny thing; barely five feet tall and very svelte.  But give her a pair of sticks...and stand back.  She would play like the wind.  Ten feet tall and bulletproof with sticks in her hand.  She taught me how to march and how to not apologize for being a girl in band.  I learned a lot just by watching her in marching band.  She was section leader and I'll never forget watching all the guys listening to her intently, doing what she said...this diminutive little person...whom they all respected immensely...who could play circles around most of them.  She was a powerhouse, but was able to lead without shouting.  A trait I've always admired.

As we got older, Kelly graduated three years before I did, which left me alone without my anchor for the last three years of high school.  It was weird.  The person I usually called and met and walked with and rode with, was gone.  But then, I grew up too, as we do, and moved on from Monroe, as well.  Now, when we talk, it's just as people speak of-we truly can pick up from where we left off the last time we spoke.

When you spend so much time with another person growing up, that person really becomes a part of the fabric of your whole life.  It's not so much that she is a part of my life, but more that she was woven into my life.  Much as Monroe itself was woven into all of our lives as we all grew up there.  I'm sure all of us who grew up there have different and interesting stories of our time in that town.  Mine are just a small sliver of stories.  I'm sure it's very individualized for all of us; what we each took from our time in this small village, if you will, that we were brought up in.

I used to lament the fact that we 'had' to live in such a small town; that we had to grow up in such a desolate area with so few opportunities.  I wanted to do Big Things and I felt like I was stifled by growing up in such a small place.  I think we all go through some form of that in our rebellious teenage years.  But, with age, comes some form of wisdom...hopefully...and now I see things differently.  Now, I am so thankful that I was able to grow up with one very close friend, and also a gang of so many really good friends, all the while in the warm embrace of our beautiful little town.  I think we all took it for granted, really; the ability to ride bike by moonlight, trick-or-treat by ourselves with no fear, hear a dog bark and know instantly whose dog it was and what time it was, hear the town whistle and know we should go home for supper, see a car go by and know who was in it and where they were going...all of it was really magical and unusual.

We aren't particularly similar.  Where she's quiet, I'm loud.  Where she's calm, I'm freaking out.  Where she's strong, I'm weak.  Where I'm tall, she's short.  Where she's refined, I'm...well, not.  And yet...when we speak, there's no 'laying the groundwork' conversation first, no background stories...we just dive in.  It's just understood.  It's a judgement-free zone.  I don't feel like I know her--I know her.  And she knows me.  Is it just shared experiences?  Maybe.  Or maybe we were placed together for a reason?  It's a wonderful gift to realize that we have that-all these years later-and that we will always have it.  I wonder if everyone has that someone in their life?  I don't know the answer to that.  But I'm glad that I have her in mine.  I will always be thankful for you meeting me halfway, and for all of the life lessons you gave to me.  And for Monroe having our backs all those years.  It's a rarity in this day and age to be able to say you have someone who knows you completely, and who loves you anyway.  Thank you for being that person.





Tuesday, August 30, 2016

'Romance Isn't Dead...It Just Smells Fishy...'

Preparation usually started in the fall, with a trip to Herters.  Pre-cursor to Cabelas, Herters was a store full of fishing and hunting equipment that dad could spend hours in.  I can remember the smell of the place exactly...but I can't tell you what the smell was, exactly....a smell of rubber baits and lead weights and musty old clothes and dust?  But after a big haul from Herters, dad would hunker down in the basement and start making spinners.  And lead weights.  And leaders.  And setlines.  And anything else he could make himself, as opposed to buying.

Dad's workspace was tucked away in the basement, with an open wooden stairway right next to it.  The steps were old and worn with grooves in them.  You'd have to watch your step going down.  You also needed to duck your head as you went down the stairs to avoid slamming your head into the top of the floor above you.  I used to climb down those stairs after my bath; my long hair wet down my back, usually in flannel pajamas, (sewn by mom), carefully maneuvering my way down the steps until I could sit down on a step and watch him work.  He always had a crackly AM radio on; listening to the Twins game if it was in season; otherwise, whatever he could tune in.  He had a tall metal stool he sat on while he worked; a countertop in front of him for a workspace, and a long countertop to the left of him covered with reloading presses and reloading supplies.  Behind him was an old, curved-top, one-handle refrigerator...that was a bugger to open...but I'll get to that in a bit.  The furnace was down there, too, as well as shelves with mom's canning supplies, a couple little windows, and all kinds of jokes dad had cut out of magazines and stapled up on the posts and shelves.  It always smelled faintly of gunpowder and sawdust, or lead weights when he was smelting.

Dad was always up for visiting when he was working.  It wasn't until I was in high school that he had a phone installed down in the basement, and even then it was rare that he was ever on it.  I loved to watch him load shells, talking about the amounts of gunpowder and whether he was making a 'hot' batch or not, and who they were for and what they wanted.  I loved watching him load the powder on the scales until he leveled it out, and then carefully packing up the boxes.  Sometimes he would let me load the boxes, which really felt like a big job.  But making spinners was a different kind of job.  Still precision work, yes, but not quite as measured and as careful as reloading.  He was more laid back and relaxed during the spinner-making process.  That's when he would let me help him pick out the colors of the beads, the blades, talk about how to place the clevises, talk about the length of line to use, and what type of hook to put on it.  And he would teach me about knots.  (Information I should've paid closer attention to.). After making his spinners, he would take each one and carefully curl it up into a nice circle, wrap it in upon itself, and place it into a little bag and zip it shut.  Each of these bags was organized by color in his boxes from...where?  Yep.  Herters.  Making lures was a labor of love for him.  And pride.  He loved it when people asked what he caught a fish on, and he could say, a spinner that he made.

That kept him busy through the winter.  When spring came, and the ground thawed, it was time for the nightcrawler hunt.  I can remember nightcrawler hunting from a very early age.  There were Rules.  And Guidelines.  And you'd better not screw it up.  Because this was our bait-our only bait-for the entire summer.  First off, wait until dark.  After a rain.  Even better, during a rain.  Bring a flashlight.  You want to shine your light to find the crawlers, then immediately move the light away.  After you move the light away, grab them, and hold on to them, gently!, and keep holding on until they give up and release their hold on the earth.  Then, you put them in your bucket.  And you each kept your own bucket.  Because dad wanted to see who found what.  And if I had friends over, that wanted to go nightcrawler hunting?  That was fine, but...we had better not mess up a good night of crawler hunting by messing around out there.  This was Serious Business.  When we had coaxed all the crawlers out of the yard that we could, it was down to the basement...to dad's fridge.  Where the nightcrawlers lived.  In what could only be described as a Condominium for Crawlers.  Bedding changed every few weeks, regular waterings, you name it.  And when it was time to go fishing, we would go down to the fridge, argue with the fridge handle, and grab a whole mess of our carefully caught nightcrawlers.

Our boat was an 18 foot, aluminum Crestliner.  The floor was pointed so you always had to think before you stepped.  We had dad's area where he sat by the boat motor; a C-shaped area.  He would sit on one bench, set his tackle boxes on the bench opposite him, and the other bench was used to deal with the Family's Issues....snags, lost lures, etc.  The bench next to him was for mom and one of us kids, the bench further up was for another one of us kids, and then the little seat way up at the front of the boat was for the last kid.

We fished the Missouri River.  At least 90% of the time we did, anyway.  A day of fishing meant loading up all of our gear, lunch, rods, lures, sunscreen, etc., and dropping the boat in at the boat launch, (and then hoping the old Elgin motor would turn over)....and hitting the water.  We would either troll or jig.  Trolling was a stressful experience.  I can only imagine how it felt for my mom and dad.  Five lines out; three of them kids....I'm sure we reeled in every time we felt any bump.  And getting the weights and trolling speed right must've been a trick with all of the differing angles of our rods.  There was a reason dad always said we looked like a 'Russian fishing trawler' when we were trolling!  When we weren't trolling, we were jigging....dropping down to the bottom, reeling up a little bit, and waiting....and when we weren't jigging, we were checking our setlines.  Our setlines were always set in the coolest places...eerie little areas with treetops sticking out of the water and other people's setlines and markers and it was always a game getting in and out of the area to set.  Checking setlines was one of the most exciting things we got to do.  Dad and Jon would pull up on the lines and I would look over the side of the boat, waiting to see what would appear from the water below.

Lunch meant lunch on the boat....but a lot of the time, it meant shore lunch.  Dad would pull the boat up onto a shore somewhere and we would get to explore while dad built a fire.  We would roast hotdogs and eat whatever great food mom brought along that day, and then we would go rock hunting....mica, 'chocolate chip rocks,' quartz, agates, petrified wood, fossils galore, cool pieces of driftwood formed by the waves would be washed up all along the shore.  Mom would walk with us and be just as excited as we were about each rock.  She would carefully pick out pieces of driftwood to take home for her gardens.  We would gather as many rocks as we could and take them home to put them in shoeboxes under our beds.  Dad would be pretend to be irritated by the rocks and driftwood, but then he would be interested in looking it all over, too.

There were no phones; no iPads.  No TVs.  I played with my brother and sister because there was no one else to play with.  We sat around our table in the camper and talked and played cards when it rained.  Our table had a map of the United States on it.  I used to look at that and marvel at how huge the country was.  We had a small oven, but it was rarely ever used.  Breakfast was bacon in a cast iron pan and eggs fried in bacon grease.  And a few days a week, a treat...we would get the 'little' boxes of cereal.  You know the ones.  The little boxes that came in a multipack.  We only got those for camping, and not every time.  It was a huge deal.  Dinner was always on the boat or on shore somewhere.  Supper was always in the camper.  A lot of times, fish-coated in flour and fried in butter...I can smell it as I type this-and fried potatoes.

A day in our boat could be...dad asking one of us to take the front seat and point out debris in the water (a coveted position)...dad making sweet comments about mom's legs....dad telling us to rub the nightcrawler bedding on our hands before we baited our hooks (so the fish wouldn't smell our sunscreen...)...the various smells of: coconut sunscreen, noxzema, nightcrawler bedding, the gas stove in the camper, campfires on the beach, the smell of fish under your fingernails from cleaning fish....the different tastes of: bologna sandwiches, hotdogs, Rice Krispie bars, macaroni salad...pulling in gars and sturgeons and wondering what other odd-looking fish were swimming below our boat...wicked storms that would send us to the floor of the boat while dad took us into shore...feelings from euphoria to terror and anything in between.

Now, as an adult, I still fish.  Not as often as I'd like, but I still get out there.  Our boat now has a flat bottom.  With carpet.  And a big motor.  And we cast now, for muskies.  So a lot of the time, we don't boat much of anything.  We don't go up to shore; I don't get to pick up rocks or driftwood.  I don't get to rub my hands in nightcrawler bedding and I usually don't get to filet fish.  I hardly ever get to bait a hook, as we throw artificial lures.  But.  I still peer over the side of the boat.  And wonder....what's below us?  I still look up to shore and wonder about the people that live up there.  We listen to music.  We tell jokes and laugh.  I still look ahead of us and look out for hazards...a job I take seriously.  I still appreciate all the wonders that being on the water has to offer.

People often ask me, how can you stand to go to Canada and fish from dusk to dawn like that?  For a week?  And I say, how can you even ask that?  I can't think of a single better way to spend time than on the water.  Water Is Romance....even more so than a dozen roses and violins.  You're outside.  Surrounded by nature.  Loons, bald eagles, deer, pine trees, cool rock formations, the sound of gentle waves lapping the shore...(OR, the sound of huge waves crashing on shore!). Sweet little cabins tucked away on lone islands in the middle of nowhere, an elderly couple cruising by in a wooden boat (very On Golden Pond), strangers waving as they go by, fellow fishermen giving you the knowing 'yeah we ain't seen squat either today' nod as they cruise past, enormous inukshuks looming way up high on the bluffs and little ones sitting right in front of you at the end of your cast, the echo on the rock wall as your lure hits the water, the place your mind goes when you settle into your casting rhythm and everything is flowing smoothly...the plaintive wail of the loons as thunder rumbles in the distance...the yip yip of a pair of bald eagles working on opposite sides of the narrows as they try to find a supper of ciscoes on the surface...the way you feel your breath go away when you see the fish finder stacked four feet thick with fish in the narrows in the evening...or when you see trout 70 feet down on the finder...that sensation when you notice a glow of pink on the trees and you turn around to a sunset that will drop you to your knees....the rush like no other when a huge head appears out of nowhere a few inches behind your lure...and the even greater rush when you manage to do everything right and sink hooks into one of those leviathans of the deep and pull them out of the water, glistening and mysterious, smooth and quiet, beautifully marked in a way which you swear you'll commit to memory forever-but you start to forget shortly after you feel it forcefully tug it's way out of your grip and thrust it's way back into the dark, cool, Canadian water.

You get home.  You look at your pictures.  You try to remember those sounds; those smells; those feelings.  But you won't.  Because some things can't be captured.  The smell of coconut sunscreen, nightcrawler bedding, the yips of a pair of working Eagles, huge heads following your lure...the words of your dad as he worked in the basement.  Even if you could take a snapshot of all of those events, it wouldn't capture the essence of that moment in its entirety.  Some things need to be experienced completely and wholly to be experienced.  Being Present is truly a Present, indeed.

So we will go fishing.  And we may not 'catch anything.'  But I won't care.  It's not always what you have to physically show for something that counts.  Because my mind will be filling up with mind snapshots of memories and experiences galore.  The lake and I have this thing.  It's understood.  And it's more than a big fish or huge eagle or a fantastic sunset.  This lake is where I live.  Even when I'm not there.  I run her twists and turns and rock walls and islands through my mind all the time.  And it's where I will rest, when I'm no longer in my body.  My ashes and my soul.  I'm in love with this lake.  She's my home.  And I can't wait to go visit her again for a few days...say hello...fish upon her waters...gaze upon her shores...and fill up my mind until the next time.

So keep your roses.  Indulge in your jewelry.  Take your violins and stuff it.  Romance is where it finds you.  Where it rips into your soul and digs itself a den.  It chooses you.

Friday, April 29, 2016

In search of a square hole...

When you spend a lifetime hearing how your son isn't smart enough, healthy enough, tall enough, heavy enough, good enough; for basically any program or class or environment you come into contact with; you really do just become numb to the entire process.  It's not something you allow yourself to be hurt by anymore.  Because the situation is basically static.  Even though young brains are 'plastic', they like to say, there are some things that are just not going to be fixed.  Enlarged ventricles, for example.  Microcephaly.  Polymicrogyria.  Thinning of the corpus callosum.  Those things are fantastic malformations.  Permanent.  There to stay.  Lots has to go wrong for those things to occur.  Generally speaking, even a hard core alcoholic or drug addict can avoid having a kid whose brain contorts like that.  But somehow, we managed.  Due to him not being diagnosed yet, we don't know why.  But someday, we will.  Most of his docs still feel it's genetic.  So they feel answers will be forthcoming as science catches up.  (Oh, to not be a trailblazer.). I've spent hours staring at images of his brain.  Marveling at the multitude of mistakes that were made during development.  Wondering how I could not have known all that was going wrong inside of me at that moment.  I've read tons of journal articles about each specific problem...(while stopping every fourth word to look up the words I don't know the meaning of) and have read enough to know that there's not going to be a major scientific breakthrough that's going to 'fix' our son.  This, right now, is how he's going to be.  Of course, I'll always believe we are all able to learn.  Every single one of us.  And I will never give up on him.  As long as I am breathing.  So I will try to teach him and help him and further his abilities until I am boxed.  But all the while with the knowledge of those scans and those particular items of brain damage dancing in my own head.

But when you hear he's not enough for a program specializing in people with disabilities, that is a tough one to chew on.  I've felt like our family has been bouncing around like a ball in a pinball
machine for years, trying to find a place to rest.  And I thought we had found it.  All we've heard about since we've moved here is This One Place.  This One Place where he can go for a summer program.  Where he can go once he ages out of school for a day activity program.  So it's been The Place in our minds this whole time.  Which is our fault.  We knew better than to rely on anything where he is concerned.  We put all of our eggs in one basket.  An epic error.

We went for a tour.  Nothing extraordinary.  They went to observe him at his school.  Then, the call.  'We have some concerns.'  'He does some spitting-I know he doesn't spit at people, but still, he spits a little.'  'We could try him in the summer program but we aren't sure it would work.'  'We aren't like the school-we don't have to take everyone.'  'We would have to split the program in two now because the place we were going to hold the summer program has carpet.  And we can't have him on carpet.'  'We would have to have him in the other building where there's no carpet.'  Each comment was like taking a bullet.

"But you're our place!"  I wanted to scream...."You're our bedrock for his future!"  "You don't understand!"  "You have shiny brochures!"  "You specialize in people with disabilities!"  "He has those!"  "He should qualify for this!"

But, I didn't say much of anything.  Because, when you're dying inside, the words don't flow much.  So now, he doesn't even fit in WITH HIS OWN KIND.  Which puts us into yet another category.  Which is ???  I don't even know?

So, a flurry of emails and phone calls later....a couple of hours of sobbing....a couple more hours of wondering whether a move to Canada was in order....ended in a night spent feeling numb.  Where do you go, when the place you're supposed to fit in; the place that's supposed to accept you, says you're not going to fit?  Where....where do you go?

Do you know why you read about parents of disabled kids doing horrible things to themselves and their children?  Because of things like this.  The government doesn't care about them.  Society shuns
them.  Friends are lost very early in the game.  Families rarely help, if at all.  (Except in our case-his grandma is his Godsend.). Programs that are supposed to help end up discriminating against them.  People end up feeling very, incredibly, terribly, alone.  Alone, with a child who is now going to be living at home forever.  Or, for your and their forever.  However long that is going to be.  Dreams died a long time ago.  Hopes were squashed in the first few visits to the geneticist or developmental pediatrician.  Your sense of humor develops into a very bizarre and twisted form of entertainment.  (Because, you laugh or you perish.  Simple as that.). The next time you read one of those stories, before you judge, stop and think a moment...what did this family have to go through, that led up to this horrendous decision?

A night of fitful sleep rose to a morning of sun-filled clarity.  Mason deserves to feel welcomed.  He is more than his behaviors.  He is a person.  We will not send him somewhere where they are waiting for him to fail...where everyday might be the day that we get the call that tomorrow is the day he can't come anymore.  We've worked too damn hard to get him to this point.  Given up too much.  Likewise, we cannot be held responsible for his behaviors.  I cannot be called daily and told how he misbehaved that day.  Because I'M AWARE.  I LIVE IT.  If I could fix him, I would.  (By the way, interesting side note....those parents that say, "I would never change my disabled child; I love them exactly the way they are...."  Those people?  Liars.  They are lying.  Because....if they could make it so their child wouldn't suffer anymore, they damn well better change it. When you hear people saying that, they're speaking on behalf of themselves, not their children.  If I could make Mas able to speak so he could tell us when he has a raging double ear infection, I would.  I could make his bowels work so he wouldn't have painful constipation, I would.  Just FYI.).

As it turns out, That Place doesn't deserve to have him.  We should be choosing or not choosing places....not the other way around.  And the cost to go there?  For what they're charging, the decision should be ours, not theirs.
As I put his coat and backpack on this morning, I told him, he was too good for 'that place,' and we would find him something better.  Then I kissed him on the cheek.  He ignored that and started to stim with his backpack strap.  That's the gig.  But I know.  I know that I will get him where he belongs, even if that place is just our house.  Because I have a square hole drill bit, and I'm not afraid to use it.

I found a quote this morning that fits the situation perfectly:  "Why are you trying so hard to fit in when you were born to stand out?"-Ian Wallace

Tuesday, March 29, 2016

I knew it was coming, so I steeled myself for it.  “Name?”  check.  “Date of birth?”  check.  “Street address?”  check.  “Insurance?”  check.  ….wait for it….  “And it says here that you’re unemployed?”  

Through seething teeth, I think to myself, let’s define unemployed.  Scrolling back quickly in my mind, my first thought goes back to yesterday afternoon.  Mas gets off the bus.  Comes in the house.  I remove his backpack.  Unzip and remove his coat.  Unclip and remove his speech device.  Clean and plug in his speech device.  Remove any “empty” pictures from the device and make sure it’s functioning correctly.  Untie and take off his shoes.  Give him his Miralax dose and after school snack.  Take him to the bathroom.  Unsnap and unzip his pants.  Let him sit the required 10 (Peds GI-instructed) minutes.  Wipe his rear.  Pull up his pants and zip and snap them.  See that he’s smeared stool on the back of his shirt.  Have him sit back down and change his shirt.  Go throw the shirt in the laundry.  Then the fun began.  Unknown screaming session.  For the next few hours.  We blame constipation.  But who really knows?  Ran around the house opening and slamming doors, throwing toys, throwing food.  We take him to the bathroom repeatedly.  He watches requested shows on tv.  Any commercial with applause?  Starts another screaming fit.  But applause sounds elicit the added benefit of covering the ears, throwing himself on the floor, kicking his feet.  Any commercial with babies? Same thing.  He watches YouTube.  Same thing there.  We pray for no babies and no applause.  (Why can’t YouTube have a filter for such things?!)

It’s beautiful outside so we decide to run to town to get a steak to grill.  Should be great, right?  But any car ride for Mas now means he gets a cheeseburger.  So, a cheeseburger it is.  We drive through, because sitting inside means:  might run into a baby or small child who makesbaby noises.  And if we’re in an enclosed space when the baby shows up, we have the added pleasure of getting scratched and/or grabbed.  Go park and watch trucks, which is his favorite thing.  I walk to the store to grab groceries.  Howard feeds him and they talk about trucks.  I walk back to where the truck is parked, lugging groceries.  On the ride home, Howard wants to play me a song.  Great tune, but it has applause at the end of it.  Mas responds accordingly.  

When we get home, Mas throws his usual screaming fit that signifies the end of a trip.  Covers his ears, runs in the house, down the hall, screaming.  Take him to the bathroom, same drill as before.  Untie and remove his shoes.  Unsnap and unzip his pants.  10 minutes of peace.  Throw in laundry, fold and put away one load.  Back to bathroom. Wipe.  Pull up the pants.  Snap and zip.   Time for his supper.  Get out his meds.  Feed him a limited supper because he already had a burger.  His show has ended and regular tv has turned back on.  A baby comes on the screen.  No sound, just the picture of a baby.  Instant screaming festival.  Runs down the hall, hands over his ears, screaming bloody murder, slams his door, picture falls down, kicking the floor.  We work on getting our food ready.  

We finally get ready to go sit outside.  It’s 56 and no wind-a gorgeous day by any standards.  Put my feet up.  Mas comes out.  We talk to him about looking for airplanes.  Dog makes a yawning noise.  Mas runs in the house, screaming, hands over his ears…same drill.  Comes back out about ten minutes later.  We talk to him about looking for the moon.  Someone walks by the driveway and the dogs start barking.  Masresumes his screaming episode.  We look at the time and decide a 10 minute early bath is totally alright tonight.

I go inside; he picks up his toys.  I bleach clean his ipad, the counter, his chair.  We go into the bathroom.  I brush his teeth, floss his teeth, start the bath water.  He removes his shirt, I remove his pants, his socks.  He goes to the bathroom.  I turn on the lights for his bath and the fan.  Wipe his rear.  He gets into the tub himself.  I wash his hair, clean his body, rinse his hair.  We make bubbles and talk about the bubbles.  I turn off the water, take his dirty clothes, head to the laundry room.

I change over the laundry, empty and load the dishwasher, update the shopping list, bleach clean the counters.  Howard feeds the dogs and gets the grill going and puts the potatoes on.  I put away clothes,Howard opens the shed door and looks wistfully at the boat for about ten minutes.  I go back to the bathroom, take Mas out of the tub, dry him off, set him on the toilet.  I put his deodorant on, spray some body spray on, and make note that it’s almost time for us to shave him and cut his nails.  I put his pajamas on and take him to his room and turn on his fan, give him his crib toy, shut the door, and go back to the kitchen.  I set out the morning items….cereal, bowl, cup, Miralax, spoon, meds, pudding, applesauce.  

I go back outside and Howard and I sit and enjoy the last bit of evening light while the chicken finishes cooking on the big green egg.  Bliss.  Mason comes out of his room continuously.  We keep telling him to go to bed.  At about 7:45, Howard and I sit in the kitchen and eat supper.  While stopping continuously to tell Mas to go back to bed.  At 8 pm, we clean the supper dishes away, unload and load the dishwasher back up, and get settled in to watch some Netflix.

Our Netflix show has some applause in it.  We hear pounding and screaming from Mason’s room.  He comes out in the hallway, screaming and covering his ears.  I chastise myself for not catching it and muting the sound.  He goes back into his room.  Next, our show has people screaming.  Mas comes out and repeats his display.  This continues until 10:30 pm.  Howard takes Mas to the bathroom for the ‘last’ time of the night.  He gives him his “sleep aid” (insert joke here).  We finally get to bed, lights off, at 11 pm.  Fall asleep around 11:30.  

am, our bedroom door flings open, Mas is standing there, screaming.  I look at clock, force myself out of bed, take him to the bathroom.  Wipe.  Put his diaper on.  Put his pants back on.  Take him back to bedroom.  Turn his moon on.  Check his crib toy batteries.  Tuck him in.  Close his door.  Say a small prayer.  Crawl into bed.

am.  Screaming like he’s being poked with hot pokers.  I go to his room, expecting to see wild animals in there.  Just him; fan off, toys pulled out, blankets on floor.  I take him to the bathroom.  Wipe.  Put his diaper on.  Put his pants back on.  He clicks on the roof his mouth-his sign for thirsty.  I give him a drink.  Put my hand on his forehead for the obligatory ‘do you have a fever’ mom check.  Nothing.  Take him back to bedroom.  Make his bed.  Put the toys away.  Turn the fan back on.  Turn his moon on.  Check his crib toy batteries.  Tuck him in.  Close his door.  Say a small prayer.  Crawl into bed.

am.  Opens our door.  Turns off our fan.  Grunts.  Grunts.  Grunts.  Slams our door.  Slams his door.  Opens our door.  Clicks our light switch repeatedly.  Grunts.  Grunts.  Grunts.  Slams our door.  Slams his door.  I go to his room, look around, all seems to be well.  Decide I should probably take him to bathroom.  Go to pull his pants down, and they’re soaked with urine.  Go to take his shirt off, also soaked with urine-up to his chest.  Turn the light on, take off his clothes, wipe him clean, wrap the diaper in a bag, throw it out.  Go to throw the clothes into the washing machine.  But the machine is full.  Because our machine is always full.  (I’ve folded more 3 am loads of laundry than I care to remember.)  Move clothes overstart dryer.  Go to his roomremove urine-soaked sheets.  Hope and pray his urine pad was in the right place and saved one of his two waterproof mattress pads….yes, luck is with me tonight.  Only have to wash his sheets and one urine pad and his pajamas tonight.  And one blanket.  Not bad.  Top blanket is okay.  Remake bed.  New urine pad, new sheet set, new blanket, old blanket from floor, pillow and crib toy back in place.  Put all urine-soaked items in the washing machine and start it, shutting the laundry room door so the noise doesn’t wake him up.  Go back to bathroom, dress him, take him to bedroom, tuck him in, check crib toy for battery life, turn on moon, turn on fan.  Close door.  Say big prayer.  Fall into bed.  One of our labs grunts disapprovingly.

5:30.  Alarm goes off.  Throw clothes on.  Let dogs out.  Feed dogs.  Mix up Miralax.  Pour cereal.  Start coffee.  Wake up Mas.  Take him to bathroom.  Undress him.  Put on deodorant and body spray.  Dress him for day.  Go to kitchen.  Feed him and give him meds for day.  Back to bathroom.  Brush his teeth and comb his hair.  Set him back on the toilet.  Pray he doesn’t get stool on the back of his shirt, which is the usual morning routine.  Check for a spare shirt for when that happens.  Close door so he can sit.  Get his backpack, shoes.  Check weather for coat options.  Get coat.  Get him off toilet.  Note shirt has stool on the back of it.  Change shirt while trying not to get it in his hair.  Wipe.  Pull up jeans, snap, zip.  Have him sit on couch to put his shoes on.  Put speech device around waist.  Put his coat on.  Zip it.  Put backpack on him.  Clip it.  Open front door and wait for bus.  When it arrives, follow him on bus and put his seat belt on.

Bus pulls away, and I get to have breakfast.  Now, I get to buy groceries, ours and his, do dog chores, (grooming, baths, etc.) clean, do outdoor chores, mow and/or push snow, do landscaping, check his supplies and replenish diapers/wipes/toothpaste/medications (OTC & prescription)/clothing/anything else he needs to survive.  

On a good day, if I plan everything just right and am on my game, I can usually squeeze out some time for myself, where I can quilt or take pictures.  (But lately, I usually try to catch at least a 20 minute nap…because even though our neurologist told us, “a lot of kids like this just don’t need much sleep”…guess what, we do.)  While on call for him, of course.  Because you never know when you’ll be called and told:  “He has yellow snot coming out of his tear ducts.  He is walking bent over.  His hands are purple.  His feet are purple.  His cheeks are purple.  His ears are bright red and warm.  He won’t eat his lunch.  He won’t drink anything.  He’s screaming and he won’t stop.  He’s very still.  We can’t get him to calm down.  He has diarrhea.  He keeps having bowel movements.  He hasn’t had a bowel movement all day.  He’s just not acting like himself.  He is spitting a lot.  He is drooling a lot.  His nose won’t stop running.  He’s a snot machine.  All we’ve done today is wipe his nose.  It seems like he just wants to go home.  He keeps pushing mom on his speech device.  He keeps pushing home on his speech device.  He keeps pushing I want to go home on his speech device.”  All of which are real things I’ve been called for over the years.  And that’s truly only about 10% of the calls I’ve gotten.  So I’m always on call, day and night.  For no pay.  No benefits.  No appreciation. 

But let’s look at your job.  What, 38.5 hours a week?  Because we all know the 40 hour work week is long gone.  Between waiting in line at Starbucks before work, lunch taking longer than it should, office birthday parties, leaving early for “special” events, and the all-encompassing “traffic” excuse, 38.5 might even be pushing it.  You.  Mid 20s.  Brunette.  Haughty.  Nose lifted a little higher than the top of your computer screen.  You come to work in your matching clothes, heels, hair done, jewelry.  You come to work, check people in, sit in your chair.  Your fingers touch the keyboard.  About 10 am you stand up to use the bathroom and “stretch your legs a bit.”  At 11:55 you head out for lunch.  Your chosen lunch spot is busy, so you call your office crony to let them know you’ll be a bit late.  You saunter in at 1:08.  Sit back down.  More typing.  Maybe some filing.  Some phone work.  At 2 pm you eat a power bar and drink a Sobe.  At 4 pm, you’re like a horse pointed for home.  Start joking with people as they come in, start emptying your coffee mug, straightening up the desk, headed for the homestretch.  By 4:30, you’re eyeing the clock like it’s mocking you…counting down the mintues.  At 4:50, you’re pulling up your nylons and adjusting your shoes, closing out of your computer.  At 4:55, you stand up and tell your co-worker that you’re headed out, to avoid the crowd leaving the hospital parking lot.  You head home, to your 20-something-year-old-life, which probably consists of a lot of selfish and age-appropriate daily decisions.  You either party or sit on a device all night, maybe even head to the gym and chew gum while looking bored on a treadmill, sleep all night, and wake up so you can go to work and ask some tired looking 46 year old if she’s unemployed the next day.  

So.  It says here you’re unemployed.  Sure.  Let’s go with that.