Looking the monster right in the eye.

           So, Thanksgiving has come and gone. Two holidays and so far no hospitalization this fall.   If we make it to New Years, Chris Hardwick needs to show up and award points.  If we make to Easter with none, I want medals and a brass band.  When you have a kid with special needs you get very good at short range tactical thinking. How to fit five or six out of town appointments with specialists in into a week, max.   How to pack at three am for an out of state hospitalization (that one you learn the HARD way.)  Exactly who must be called when you disappear for a week or two so no one freaks out and thinks you're angry at them/dead/abducted by aliens.   But regular long range plans are hard for us.  They take a leap of faith you sometimes don't realize you need.  You have to learn how not to overpack for visits to relatives. (Hint, you don't need all the equipment and you can put pertinent medical info on a thumb drive now, so no paper either.)  You have to remember not every gasp or freak out on the part of others means an emergency, sometimes they just don't know what our normal looks like.  You have to realize that gosh, darn it, other doctors in other towns went to med school too and did not just go to the barber's school of small pox and leeches.  But it is hard, you know.  You watch a kid like mine with a mixture of awe and fear at all times.  It's like Feisty Pants is the toughest Faberge Egg in the bunch. She is resilient and tough and feisty in ways I can only hope to be when I grow up, and yet a cold could lead to medivac helicopters and ventilators. 

             I write all this , by the way, not to bitch or whine  (I don't care what the rest of the freak commune masquerading as my family here says. Don't listen to them.)  I write all this because I want this blog to be an honest account of what the journey is really like with a special needs kid.  It is at all times a heady mix of fun, fear, and crazy.  It's not all beer and skittles but mostly because of our reaction to the circumstances, not the circumstances themselves.  And I listed fun first for a reason.   I have learned to take my victories and joys where and when I find them and that attitude has let me relax be a better parent.

             But, the holidays are upon us.  And my two smallest budgets, time and patience, are even more taxed than usual. There are relatives to visit and presents to make and/or buy.  Cards to write.  People to see.  Lists to accomplish.  A million things I need to remember that I know I won't remember until it is too late. And now, sigh, in the last few weeks we have all battled a tummy bug and then followed that up with a cold for good measure.  There were no issues that led us to an ER or hospital stay.  But there have been so many in the past.  At exactly this time of year.  So even though, we sailed through with no problems or complications, I will spend the rest the year looking at my feisty one with a slight amount of trepidation knowing that this time, we dodged a bullet.   And it could easily be next time, that we do not.          

              

Rhythms

             So, we have managed to survive the great ebola/rabies/bubonic plague outbreak of 2014.  No one had to be hospitalized.  The couch survived. We've even managed to almost put the house back into what we claim passes for order around this zoo.  We have had to do a gazillion loads of laundry but that's only because no one would agree to my proposal of piling anything smelly in the backyard and lighting it on fire.

            Ahhh, well, time to get back into the swing of things.  Stuff yourself like a turkey day is next (wait, no...) THIS week. The pies will not bake themselves.  Nor will the Christmas presents we are making make themselves. (Trust me, I keep trying, Scanners style, but so far, no dice. Sometimes the universe just won't cooperate.) 

            Well, nothing for it but to roll up our sleeves, dig in, and get done what we have to.  There's an odd rhythm to being the parent of a disabled kid.  At least one like mine.  When you have these sudden health crises that seem to drop out of the blue and take over your life for a while, life takes on  a weird, not quite syncopated tempo.  We have spent  weeks and months in the hospital, where life is odd and the outside world seems to be on hold.  I wonder if it's what life feels like to an astronaut in space or a soldier in war.  You have your own day to day rhythms but they are different from any other part of your life.  When you get back home it feels different.  You feel out of sync for a little while.  If it's been a long stay for us, we have to almost learn a new routine.  Like a kid going back to school after the summer.   And the same brain drain seems to apply.  Don't ask me to remember little things from before Feisty Pants' last illness.  Especially if we have just returned from an in-patient stay.  I may start to remember eventually, but right now I am trying to remember the names of those pesky other people I live with.  And where I keep my clean socks.  And, especially, I am trying to solve the mystery of why I don't have any clean socks.  Exactly who is wearing them when I am not here- the dog???  And even though, we did not have to take FP to the hospital this time, we were all sick for about a week all told.  The same weird brain drain seems to have hit us this time too.
            So, let's make a deal world.  I'll remember to make all the pies and try to not bitch too loudly about cooking Thanksgiving dinner if you all ignore the fact that I probably will have no socks under my boots and my shirt's likely to be inside out.   Otherwise, I am exactly the type of meanie to throw a pie or two.

It must be the holidays!

         Well now, we have had an eventful week.  Feisty Pants had Veterans Day off, and so did Hippie Pants, so we spent the morning raking leaves and doing yard work.  Then Goo, who was on a "let's get this stuff done kick" (and who was gently reminded with a kick to his shins by FP), dragged out all our Christmas stuff out of our attic.  So we put the tree and lights up too. (You're welcome, neighbors! ) The day was long, especially for Goo, but Tuesday evening we were feeling down right cheerful and Christmasy. (Shut up, that is too a word.)

        The universe has rewarded all our hard work and bon vivance (that is also a word, so still shut up) by giving us a few days off.  As in nothing's getting done now because we all have ebola.  Or the plague. Or zombie flu. Or whatever hideous, awful, literally gut wrenching virus is going around here right now.  I shouldn't whine too much.  No one is having terrible complications, especially FP. It doesn't last forever.   It only feels that way.  And we have been very lucky.  Feisty Pants is having only minor, if messy, tummy troubles. Goo and I did not get it at the same time, so while it makes for a very loooonngg couple of days for one of us, we are able to handle it without having to beg relatives for favors.  It does make me worry what one is supposed to do when a minor crisis becomes a major dilemma because you have a special needs child.  I cannot just hire a babysitter. Seriously, it cannot be legally done. You have to be trained on her machines. We had to take classes on them before we ever allowed to bring her home as a baby.  Nursing care is usually available but hard to arrange, so by the time it is set up, the crisis has passed.  We are so lucky that Hippie Pants is close enough to help on the mornings she doesn't work. 

         But, we are indeed lucky, and so far, fingers crossed, in eleven years we have yet to hit a snag where we couldn't find a solution.  We will recover, even if we all whine the entire time.  It is just a nasty tummy bug.  We did, after all, get our major work for the week done beforehand.  But if you are new to the caring for a feisty one, make sure you have plans for the crazy stuff.  Like what to do if you all get some horrible zombie flu at the same time.  Or someone needs an emergency appendectomy.  Or gets hurt because some idiot did not see the 6'3"  man in the bright blue coat and white helmet on the big silver and black scooter and hits him with her car thus putting one his arms out of commission for three months.  Or any of a billion things that complicate all our lives on a daily basis.  Otherwise, what is a minor (or even major) complication becomes a tsunami of "how the hell will I ever get this done?"

Trailblazing

           If there is one thing I have more than enough of in my life, it is frigging paperwork.  I like to think I am a decently moral person.  I hope I was the same in any past life.  But, alas, I must have been a book thief or some horrible weeny mean  governmental pencil pusher because I am certainly paying penance for it now.  We all have annoying forms to fill at some point.  But I never had so many forms with so many levels of inanity as I do with Feisty Pants.

           I get some of it.  It's awful, but the reality is disabled children are our most vulnerable members of society and, as such, are often prey for the worst among us.  Paper trails help keep track.  It makes sure people are paying attention to those who have little or no voice.  It is supposed to mean that those who fill out such forms have seen the kiddo involved. That paperwork should exist.  But I routinely fill out STUPID forms with silly questions and no one gives you bonus points for being funny. Although I must admit, I will be a bit of a smarty pants if I think can get away with it.  I know it's childish, but when I have to answer a legal form that asks me what language my then 2 month old speaks, I answer gibberish.  The person receiving the formula didn't appreciate it but tough.  And do not ask me to fill out a form I don't actually have to.  I used to politely explain that I did not work for whoever wanted some form I was not responsible for.  Now I just laugh maniacally and hang up on them.  What is some random clerk going to do, fire me?

           The craziest form so far was when I got randomly audited for our taxes and had to prove that Feisty Pants EXISTED.  With two statements from people who dealt with her on a professional basis.   Feisty Pants has been in therapy from the time she was 2 months old.  Children under three are provided early intervention by the state. Since three, she has been in special education.  There is a lot of paper work involved.  All overseen by the state we live in.  Bet you can't guess who audited us.  All they would have had to do was look at their own damn paper work.  Her former teacher provided me a letter of such brilliant, cutting wit I am surprised the auditor did not need stitches.
          And now, sigh, I am looking at a new Tolstoy novel's worth of paper again.  This time from a governmental agency that wants to make sure she still disabled. Because cp and brain injuries clear up on their own, donchyaknow.  As if I wouldn't  be shouting it from the rooftops and doing cartwheels down my street if she did.   And they want to know things like, "How many time has this child been hospitalized?" (We lost count after 2 effing dozen about when FP was three. )  Or, " How many times has the child seen a doctor in the past two years? ( About as often as I change my undies.) On and on, ad nauseum. Sigh.  So if you drive past our house and see Feisty Pants and me roasting marshmallows in the driveway,  I just bet you can't guess what we are roasting them over.

How to Traumatize Other's People's Children Without Even Trying

               If I ever want to be the next John Carpenter or Wes Craven, I won't have to look far for inspiration.  All I will have to do get a transcript of any one of Feisty Pants' visits to the (insert dramatic music cue here) dentist (insert roll of thunder, flash of lightning).  It's a classic horror tale.  All the elements are there.  The day starts out seemingly normal.  The office seems fine, friendly even.  Everything is all right -at first.(Cue shot of overly dramatic prairie dog) Then, like all good horror stories, it begins to seem anxious and the tension builds.  The nice office staff suddenly seem creepy.  Feisty Pants begins to express her anxiety softly at first, but then loud enough that she is whisked away into a back room and doors quickly shut so other kids won't be frightened.  Too late. They already are.  They've seen her face full of suspicion and fear.
              Next comes the really scary part for the other kiddos.  As they begin to ... (wait for it) clean her teeth, she starts howling and bitching.  LOUDLY.   Then the dentist, who actually is a very nice man calmly proceeds to say things that must seem weird to an outsider.  Things like, "I know your scared but must you bite?"  Or, "Oopsy, that's a lot blood for that. Suction, please"  All while Feisty Pants is screaming, "You done? Get done! Go home now!" or "Done. Be Done!" or the ever popular, "Goo! I want GOO! GOONOWNOWNOWNOWNOW!"  And, remember boys and ghouls, her speech is very garbled. When agitated, she sounds like she is crying and whining.  And that's BEFORE she has a mouth full of dental instruments.  Sometimes she kicks too.  So let's see... That's weird dental instrument noises, check.  Child shrieking and seemingly moaning, check.  Suction noises, the mention of blood, and the occasional bang and thump, check.   Yup.  That should just about do it for scary movie noises.  And we are waaayyyyy off in the very back of the dentist's office.  I think that's because the office staff are trying to dampen the noise down so as not to scare the other kids.  Fools.  Those kids all know that's where the dungeon must be kept.  They put all the screamers back there.
               And just when the tension cannot get any higher, it's abruptly quiet. That's almost as freaky as the all the noise was.  I'm sure some kid thinks Feisty Pants has died of fear or been smothered to keep her quiet.  And then, the nice dental hygienist who has been talking in that annoying voice all grown ups get when trying to jolly some little kid (but, let's face it, big people, only comes across as creepy)  tries to cheer Feisty Pants up with a new toothbrush and a sticker or toy.  Feisty Pants, for her part, happily accepts- mostly because she knows they are all done mucking about with her mouth and she can go home now.  And we make the next appointment and stroll on outta there.   With all the little kids in the waiting room looking at Feisty Pants with big serious eyes and slightly worried expressions.  Feisty Pants, who is now in a terrific mood, gives them a wide grin.  By the way- have I mentioned she doesn't swallow properly?  So she gives them a wide grin with a little trickle of blood running down from the corner of her mouth.
              The last couple of times we were there they had us leave by the back door.  I really wonder why.

 

 

November

               So, another Halloween has come and gone.  No one was in the hospital.  No one cried or threw up.  And our jack-o-lanterns made it through the weekend without violence or bloodshed. (Or is that pumpkin guts-shed?)  So, I am officially calling the Season of the Witch a success.  I am a little scared to do that only to wake up tomorrow to some awful horror or fever or "pea soup scene from the Exorcist" style crisis.  But we had a GRAND weekend and I wanna revel in the gratitude a little bit.   We have now hit a fabulous in between moment of the year and I am going to bask in it as long as the Universe allows me to do so. 

              The rush to fall and Halloween is done.  Christmas frenzy is not yet up and running no matter how much  the big box stores want you to think so.  It's still too early to start prepping for stuff yourself like a turkey day.   The clocks have been reset (YAY extra hour of sleep HUZZAH!) and it's cold and blustery outside.  Sigh, long contented sigh.  I am one of those weird freaks who LOVES the cold and dark of the year. A cold November is one of my happy places.  All you sun bathers dreaming of sunny climes and sandy beaches can have them.  I could shack up with a polar bear and be thrilled in an ice age. As long as it's cold enough to kill the leaf mold, Feisty Pants does not wheeze.  This so much more civilized than when she was younger and we spent this time of year camped out in ER's and peds wards.

              And so, not much to rush around doing right now.  As long as Feisty Pants isn't sick, we will just go about our routine.  Therapies and a few doctor's appointments.  One dentist visit to make it through, hopefully with out traumatizing the other kids there.  (Feisty Pants is not a fan of the dentist and makes sure to let everyone know it.)  Some leaves to rake.  A few chores to finish before the snow starts to fly.
            Feisty Pants herself is in good mood too.  She got to be a Ninja Turtle.  (Leonardo, cause he's the leader, of course.)  She originally wanted to be a voodoo doll but no one else wanted to do a voodoo theme AGAIN.  Both she and Hippie Pants go as a theme somehow, so she settled for TMNT because they are (and I'm quoting here) "bad azz".  She is also all excited because she got to break out her new winter coat which is frigging neon pink.  I'm allergic to pink, especially on girls, which just makes that more fun for FP.  She thinks she is being as rebellious as hell.  Do me a favor .  Don't tell her otherwise.  She  is having way too much fun being sure she is a bad azz.  And I just maybe, might get a few minutes to sip some tea and enjoy all her bad azzness.