Wednesday, December 17, 2014

Wheeee?

               In case you've never had the fun vacation of a kid in the hospital, it's best describe as a roller coaster.  Or a bi-polar episode, maybe.   Lows, highs, and a bit of whiplash.  Let me illustrate the last 48 hours.
Tuesday:                       
                When I woke up this morning,  I fully expected feisty pants to be home by this afternoon.  So I didn't go in to the hospital (her father has been staying this time).  I stayed home and cleaned and tried to catch up on things so that when she got here we could have a fun evening watching whatever FP wanted. But at 10 am no doctor. Same at noon.  And 2 pm.  By five, when the doc did come in, the nurses had noticed a pattern of low sat rates and funny heart rates.   So no discharge.  And I could have blown off the house and spent the day with her. Sigh.  Instead, here I am waiting for tomorrow with only Google and WebMD to keep me company.  Now I am concerned about her brain tumor/ebola/prostate cancer. Great.
            But that's kind of the way it goes with a feisty one.  All the every day trials and tribulations seem magnified because it's more complicated juggling life when you have to add dozens of doctors appointments and medications and therapy sessions.  Then factor in physical logistics,  emotional logistics (some feisty kids find every day situations overwhelming in a myriad of ways), and, my favorite, sleep deprivation.   Now, just to be thorough, throw in all those fears that come nag at you at three am.  What if she is getting worse?  What if they want to ship her out?  What if we have to skip Christmas this year?   How much snoring and farting can an 11 month old dog do at 3 am, anyway?  (Maybe that last one is just at our house.)
 
Wednesday:
                      So after trying to keep busy and get some holiday stuff done (What day can be a complete waste if it ends with washing chocolate out your hair?) I tried to get up early and rush in to stare at my kid and worry in person.  Only to find her looking normal.  Her sick version of normal, but normal nonetheless. Sat rates still suck, but holding on the O2.  Cranky as hell, but that won't change until the say the magic word (discharge).  Heart rate down a little bit.  Still a very sick kid.  But not dangerously so.  And still willing to argue a little bit with the doctor.  (Nuh-uh, she is too ready to go. Just that no one asked HER.   And btw, owowowowowow her IV site is just KILLING her, maybe they should take it out???)   So, now I can breathe. 
                      And, that's also the way it goes with a feisty one.  Just when you're ready to face whatever.  You've girded your loins and screwed your courage to it's sticking place.  Put on your best brave face and waited for someone in scrubs to ruin your day/week/year/life.  They don't.   You catch your breath and reboot.  And get a little break in the storm.  And the day seems blissfully uneventful. And my three am demons get a little smaller and less loud.  If only I could also dampen the sleeping noises (and smells ) of Cheweverything Pants.
                          

Monday, December 15, 2014

In which the Monster finally blinks

           Which philosopher was it who said, "if stare into the abyss long enough, the abyss stares back into you"?  Prolly Nietzsche or one those fun dour ones.  I get it's mostly a poetic way to say, " stop dwelling on the negative there, Debbie Downer."  But damn, it sure feels like we've been staring into the abyss alllll weekend long.  Sigh. Feisty Pants is actually doing much better.  Better enough that they are discussing paroling her soon.  Which means she is also now better enough to complain 24/7 about being tortured and imprisoned, umm, er,  I mean hospitalized.

          So, hopefully, we will be home in time to have a somewhat organized Christmas. And find the cat, who has escaped and is sulking under our back porch because the only two humans he likes haven't been home since last week. Maybe actually finish a cookie. Or wrap a gift. My in-laws will be doing the holiday after the holiday, thank heavens, so I might actually be prepared by then. (This is, at least, the lie I am telling myself.) My folks are used to me and will just roll their eyes and think, "We'd knew she be all hurry up and never done".  Everyone else will have to roll with it if we show up in dirty sweats with half made gifts,  looking like refugees from  some very smelly disaster.  

           I used to try to still be as close as possible  to whatever passes for normal when Feisty Pants was younger.  Foolish of me.  I was tired and over stressed and just made myself ( and everyone else around me) miserable when I never met an impossible illusion of what I thought was organization.  Now, eff it.  We try to show up.  On time. And be somewhat reasonably presentable. Preferably with no weird biological substances in our hair .  Doubly preferably with no one screaming. Triply preferably with none of the screaming being aimed at me. Anything else is a fun goal but we make no promises. And anyone who does not understand is just gonna have to deal with it and/or suck it. I don't care which.  This year my Christmas gift is having her home and anything else is simply details.  So if we are too messy, too loud, too chaotic, too casual, just consider us the embodiment of Christmas present.  The children who accompanied that spirit were poor homeless waifs so we already look the part.

Thursday, December 11, 2014

And the Monster looks right back...

           So I haven't posted in a week and half.  Mostly because I am Busy with a capital B, gifts and cards and baking,  but also because I was a bit lazy I think.  But today, sigh, oh today, I will have hours to post.  Mostly because I am sitting in an ER waiting for the ambulance to bring in Feisty Pants from school.  Ambulances seem quick, but there are forms to fill and sign and their top priority is getting the patient to the hospital safely, so it takes longer than you think.
            Feisty Pants seemed ok, but with a slightly runny nose, this morning.  Not unusual for her. But within an hour of getting there, her sat rate dropped and her temperature spiked.  To effing 105.  So the school called us, then 911.  We grabbed a taxi and are now sitting here in the ER waiting room doing just that. Waiting. I hate waiting. It's always so much worse in my head than in real life.  And Feisty Pants is adventure enough without my imagination/anxiety adding it's two cents. She can go from fine to omg call the paramedics in a few hours.  Today she beat that record.  Fine to oh shit in an hour  flat. I am sure she has scared the nurse and her teacher too.   They haven't seen her pull such a 180 turn before.              
            Well now it's hours later. I was interrupted by the arrival of the Feisty Pants express. And as I expected,  a very stunned nurse. She had never seen Feisty Pants pull the omg trick before.  Sigh. We have. Too many times.  Today's version was fine to fever of 105 in an hour. So far they have done the x-rays and the blood cultures.  They have filled the forms and started the IV.  Started the antibiotic and given something for pain and fever.   Then gave something to "help her relax and maybe sleep" HA. HAHAHA.  Not going to happen folks. FP hates ambulances and hospitals and medical personnel.  Right now she is not even too sure about Goo and I. And so we spent the morning listening to her complain.  About her pain. About the needles.  About the fact that we couldn't leave. Six hours later and she is still complaining.  I don't blame her one bit.  I'm ready to pull up a seat and help her sing the blues.  Her father has been awake 24 hours and is singing his own blues.  We are in a good place.  They are doing all the right things.  She will mend and the fact that she has strength to bitch nonstop is a great sign.  But I gotta be honest.  Today sucks. Watching your kid be sick and in pain never ever ever gets better.



Saturday, November 29, 2014

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.          

              

Monday, November 24, 2014

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.


Saturday, November 15, 2014

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?"

Monday, November 10, 2014

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.