Sixteen

           Originally I wanted to entitle this post Out of Exile.   I have been absent from this blog since November. Not by choice, or necessity, but by some damn interwebs glitch wherein Google wasn't speaking to me.  That's a whole geological epoch in internet time.  Civilizations have risen and died. Species have been wiped out. Insert some sort of ice age/comet/second coming of various saviors joke here.    But now I'm back- cue the Eminem song, please.   Google in it's weird, infinite wisdom has allowed me to recover my account and here we all go again.   No need to thank me.  You're welcome, citizen of the interwebs. 

           So what have I been doing these long winter's evenings?   Other than banging my head off the keyboard in frustration? Hmmm, lessee.  There was Turkey Day and Christmas tree trimming (not in that order)  Christmas in Brigadoon.  New Year's Eve consisting of being happily boring at home.  Second Christmas at the in-laws. (We're like Hobbits that way.) One more surgery scheduled for Feisty Pants- wisdom teeth.   One more test she will have to be sedated for. (Hip scan to check her hardware from the last surgery.)   Almost weekly out of town trips to various specialists. Is this Tuesday? It must be Philadelphia.  Friday? Oh, yeah, Rochester.

           But, mostly I wanna talk about two AHMAZING things that have happened.   Last fall, Feisty Pants' pulmonologist pulled her cpap machine declaring she did not have sleep apnea and did not need it. Simply put her back on nasal cannula and o2 at night.  FP has been on oxygen at night since she was born. I was told she will never come off. She did so well without the cpap, they tried to pull the o2. It worked. She is no longer on oxygen unless she is sick or having an asthma attack.  And today is her sixteenth birthday. 

           When Feisty Pants was born, she spent six weeks in our local NICU.  One of the last things the neonatalogist said to me was, "You need to know you are probably taking her home to die." So far, she has not bothered to do so. Today she turned SIXTEEN. Sixteen years of work and worry and hospital stays and specialists and meetings and medications.  Sixteen years of roller coaster highs and lows. Of the hubby and I holding each other back so we didn't punch doctors who forgot how to be people. Or reminding each other not to hug strangers who made a huge difference without realizing it. Of yelling and typing and yelling some more at bureaucrats and insurance people and politicians. School teachers who made us howl at the moon. School teachers who made us shout with joy. Of high fiving FP for swearing.  Of early Christmas trees so we never miss them. Dinners at 3pm or midnight.  Easter and Thanksgivings at Chinese restaurants. Some days this journey can be really hard.  Needle sticks and medication regimens and sleeping and working in shifts to care for a disabled kid can be tough.  Today is NOT one those days. Today my baby who was supposed to not make it got a bracelet from her boyfriend that says" Warrior". It was a sweet gift.  But we already knew.

Happy Sixteenth Birthday, Feisty Pants. 

Just effing VOTE already.

         I wanted to make this a witty piece about Feisty Pants' future. I wanted to be funny and convince you to happily do your civic duty for my kid's sake. Then I wanted to grow fangs and howl at the moon because I don't know anyone with a disabled kid or any disabled American, really, who is not a little scared right now. Women feel demoralized and frustrated. Minorities are frightened. Immigrants are directly being targeted. The LBGTQ community is being treated like they should pretend they do not exist.  Meanwhile we have alleged leaders who intentionally lie and act as if it's immoral not to go along and believe them. Who openly use neo nazi lingo in public rallies.  Who equate obedience with morality.
         And we have a lot of otherwise good, decent people who don't want to see this because no human ever really wants to acknowledge the monster in our own midst.  It's like we are all collectively the mother in those old crime dramas.  "But your honor, my son is really just a good boy."  And this is all because, as Trae Crowder put it, "We fell asleep at the wheel."
         Agree with me? Then freaking vote.
         Disagree with me?  Still vote.
       
But agree or disagree with me, chances are today's vote will decide whether or not human beings with pre-existing conditions are protected or thrown to the wolves.  Whatever else you do today, for the love of all you hold good and holy, VOTE.

My kid's very life may just depend upon it.

The back to school crazies

                                       So I did not get anything posted last month.  I feel like somehow I let myself down.  (I have adhd so self discipline is a work in progress for me.)  In my defense, when it hasn't been crazy busy with Feisty Pants, it has been just plain crazy.   It is one of things that bothers me about this journey with her.  You never seem to get a chance to catch your breath and remember to enjoy the ride. It's never all beer and skittles with a special needs kid but it's also not the Bataan Death March.   Feisty Pants is back in school.  Her class is properly composed of mostly boys and her bestest girlfriend and her.   Boyfriend Pants is indeed in her class this year.  All is well in FeistyPanstadu, at least as far as Her Most Gracious Highness is concerned.

                                     She also only had one illness. (It took several doctor visits and two different antibiotics, but that simply is nothing for October)  We got her g-tube switched and it lasted a whole two weeks before it malfunctioned and turned into the Bellagio fountains and had to be replaced.  And I only have to had to call a drug manufacturer EVERY FRIGGING DAY, wasting hours of time, to try to figure out why no drugstore in my area can fill a simple prescription for a scopalomine patch.  (Usually a motion sickness drug, but in FP's case , it's an important medication to help stave off pneumonia)  I don't hear of any little old ladies on cruises going without, the FDA's website does not list a shortage, so why can't a disabled kid get some, hmmmmmm??  Funny, still no answers beyond a "We are aware and are working it" from the factory.   Why yes, I am the kind of mom who will hunt the factory's phone number and call them.   And then bitch on their facebook page.  Why do you ask?

                                     And it's not even that Betsy DeVos is a joke. (I say "joke" because it's the only four letter word I can use and not ban my mom from reading this. Feel free to insert your favorite word there. I know I am.)  The alleged Secretary of Education (I say alleged because I have yet to see her act like one) is ignoring anything pertaining to the disabled when she is not outright discriminating against them.  Filthy, rotten "joke." Seriously, she has, among other things, told the Dept of Education to IGNORE complaints if they are made by someone who has ever made a complaint before. Parents of special needs children tend to think and act like, well,  activists.  You simply have to be to get anything done.  Now, she has issued instructions saying we are to intentionally be ignored. Has the woman never read a book?  Specifically has she never read A Tale of Two Cities or Les Miserables?   Does she want a revolution?  Because this is how you get one.  

                                 Sigh, I'm whining and I know I shouldn't be.  Feisty Pants is doing well on the new antibiotic.  She has been named student of the month in her class for hard she works.  We have FINALLY gotten aquatherapy and massage therapy back and it's been WONDERFUL. (Hollalujah!) It's October (even if the weather doesn't realize it) and soon it will be Halloween.  (We LOOOOOVVVVEEEE Halloween. It's the only day of the year we seem to not be freaks. mwahahaha)  I am actually acutely aware of how grateful I should be right here, right now, in THIS moment. I truly believe that the Universe hands us lessons and circumstances for a reason.  So why can't I catch my breath and feel the gratitude I know is lurking beneath the surface?

                                You know, I recently read of something the article's writer entitled "school restraint syndrome".  It's when a kid spends too much effort and energy being good and sitting still for school that they then come home and totally act out.  I totally get that.  I, too, have only so much restraint and maturity to offer the world.  So I'm gonna label this "special needs mom restraint syndrome".   I have been spending all my grown up currency dealing with people who are semi polite but yet uncooperative  (look away NOW Mom) dicks. I only have so much currency left before I too act out.

                                    

No clever title here

           So, I have been writing this and rewriting this post for a week or so now.  A state agency has been doing what I consider to be some shady work (involving cutting back on social workers). I wanted to write some clever screw you post.  But I cannot quite get on paper the words and tone I wish to convey.  And, no, it's not because I simply devolve into swearing and banging my head off the keyboard. (What?!?  I swear it's not, honest.)  I have been worrying a lot about where we are heading as a nation lately. So let's get out a few facts first.   When any culture devolves into authoritarianism, several things always happen.   There is a cultural buzz all about law and order.  Political opponents are turned from rivals into enemies or criminals. (Chants of lock her up anyone?)   Any criticism is marked as a criminal and treasonous. ("Lying media" and "gotcha journalism" anyone?) Certain segments of society are singled out as "vermin" and "free loaders" and a criminal class.  (Can any of you tell me exactly what sort of crime an illegal alien has committed? Hint it's not a felony- it's more like a traffic infraction. And seeking asylum is not a crime at all.)  Crimes against this segment now marginalized now become frequent and then commonplace.

          AND THEN THEY GO AFTER THE PHYSICALLY VULNERABLE.  You know, like the elderly and the disabled.   It always happens.  DO NOT KID YOURSELF. Look at orphanages and nursing homes behind the iron curtain.  Read the reports of forced euthanasia and torture of the disabled in Nazi Germany. Hell, google Willowbrook or Pennhurst right here in the US.   Go ahead, I'll wait right here.  Then come back and read the next few paragraphs.  After you're done gargling holy water and giving your soul a bath. 

          It has not been very long - only in my lifetime has the treatment of the disabled by society begun to change.   My older sister had Down Syndrome and my older brother has spina bifida. My parents were originally turned down for adoption (I'm an adoptee) because they refused to put their children into an institution. They had to sue a state to get my sister an education.  It has only been in Feisty Pants' lifetime that she was not automatically doomed to live in poverty.   Her birth injury is an automatic pre-existing condition. It is only because of the Affordable Care Act that she has the opportunity to grow up and be a tax payer and get a real job like everybody else.  Otherwise she has to live under the poverty line in order to qualify for medicaid. 

           So you'll have to forgive me if I look upon ANY cutback with skepticism.  On any step backwards with horror.  It has been a long, dark slog through bureaucracy and intolerance and outright fear and bullying and hate to get this far.   Not even on just a governmental level.   It hasn't been too long since society itself expected the disabled to hide away as if they were somehow contagious and unclean.  The disabled are still often treated as expensive nuisances who just ought to be grateful for any pittance society deigns to throw their way.  If I had a dollar for every time someone (who usually was making a buck off my kid's disability) acted like I was just such a utter shocking bitch for demanding quality and service like Feisty Pants was a regular person, I would be having my secretary transcribe this whilst my servants fed us chocolate bonbons.  

        We are living on the precipice of tyranny.  We will not go quietly back into the dark ages and dungeons of disability rights.   In other words, do not expect us to be grateful for what we are paying dearly for.  Do not expect quiet obedience.  Do not expect us to not question your morals and motives. Do not expect us to not push back and push back hard on any perceived set back.   Disabled kids are notoriously stubborn.  The only thing more stubborn are their mothers.

            

    

Once More for the Cheap Seats in the Back

                               So, summer seems to be going pretty well. No major illnesses, although I suspect Feisty Pants is brewing another sinus infection.  It seems to alternate between raining and raining pollen here is the Southern Tier. (sigh)  Summer school is going REALLY well in FP's  not so humble opinion. Her summer class consists of BOYS, including Boyfriend Pants (!!!) and one other girl, whom Feisty Pants considers "a true friend" and henceforth to be known as BestFriend Pants.  Feisty Pants was happy to report this is the proper ratio for all classes.   This will probably be her fall class too. 

                             I am definitely glad school is humming along since society appears to goosestepping towards hell.  Seriously, what is with government trying to turn back the clock on pre-existing conditions?   For those who haven't thought this through allow me to explain why this an awful and awfully stupid idea. 

                              First of all, wtf is wrong with anyone who thinks ANYONE should not have decent health care. (Don't even spout that nonsense that we have the best medical care on the planet.   We are talking about ACCESS to it.  The tastiest gourmet meal does NOTHING for a starving person if they are not allowed to sit at the table and eat.)   We ALL deserve good health care. If you don't think so, you are evil or sick in the head. Either way some part of you needs healing and I hope you get it.   Pricing health care for anyone out of all true reach is just plain evil and we all know it. 

                              Secondly, do you even really understand what a pre-existing condition is?   We are not just talking about  a disability like Feisty Pants has.  The list is ridiculous.  Heart attacks, car accidents, RAPE, being above a certain age, having survived cancer, pregnancy, being FEMALE have all been on pre-existing condition lists before.  It's simply an excuse to raise rates to make OBSCENE amounts of profit.  It's legalized extortion.

                               Lastly, and here's the part I wish people would think about. Without the ban on pre-existing conditions, certain swaths of the country's population are doomed to poverty for life. For example, Feisty Pants is disabled through no fault of her own. (It's a frigging birth injury for goodness sakes) Without regular, expensive (in the US) healthcare she will DIE and die quickly- even her main FOOD is prescription only.  Without the ban on pre-existing conditions, she will NEVER be able to afford insurance on her own. That means she will have to have medicaid in order to live. That in turn means she will have to live under the poverty line. No career, no real gainful employment, no paying taxes.  No reason for the schools to educate her, for society include her, to not segregate her.

                            If you are ok with that, you are a Nazi and an asshole. Please get your soul checked.  If your NOT ok with that, please get off your ass and vote. Either way, the life you change will be my kid's.

The Dark Ages

                So, here we are in the dark ages.  Literally and figuratively.  Literally because Nazi ideology and a love affair with authoritarianism seems to be the public zeitgeist right now.   (Don't believe me? We are stealing the children of asylum seekers and locking them cages and calling them all criminals.  How on earth is that NOT Nazi bullshit?   That's like your neighbor banging on your door for help because of an emergency and our answer is to call them a criminal and kidnap their kids.  The detention centers even have "rules" about not even hugging them. If you are not appalled and ashamed then get your damn armband and goosestep proudly.)  Figuratively because Feisty Pants is on her first break of the summer. (She gets two- one for three weeks and one for two weeks) which means no therapy, no class, no Boyfriend Pants. Read that as one unfulfilled, grumpy, sweaty Feisty Pants who is bored stiff and craving brain stim like you wouldn't believe.  Ain't no party like a bored Feisty Pants party because a bored Feisty Pants does not stop. EVER. Or sleep. Or quit bitching because we are boring.   Her tv died last month. Thank the stars above I found a great sale on Amazon and got the new one in time for the break or she would've rolled away from home. Thank them even more for movies because she's fifteen and movies are the bomb diggity right now.   Steven Spielberg is worth every penny he ever made right now. 

             But fortunately, school starts the summer session next week. Feisty Pants is pretty sure Boyfriend Pants is in her summer class this year. She has her summer clothes, she has her new wheelchair (which would just be perfect if her uptight, stick in the mud mother relents and lets her put a Hello Kitty sticker with Hello Kitty wearing an anarchy shirt and giving everybody the middle finger on it) She has her new dye job - Mermaid! (all purples and teals and blue). She found out a new insurance may kick for her and allow her to have her old massage therapist back.  (OMG MIRACLES do occur!)  It may even stop being 100 degrees on my back porch every afternoon by then. (I wish I were exaggerating.)   She just might survive the horrible, terrible, mind numbing ennui of a barbecue with the family (horrors) with s'mores and sparklers. (Totally lame- honestly how is this not child abuse?!?)  The terror of a graduation party for (yawn) somebody else.  (At least there will be music and cake and relatives who fuss over her...) With a little bit of fortitude and pluck, she may just survive the the ordeal of school break. If not, she  is pretty sure she can figure out how feed us old farts to dinosaurs.

I'm Over(thinking) it

                If you are given a feisty one by the Universe to raise, you are gonna have to get used to constantly second guessing yourself.  Over weird sh*t too. There are decisions I have made in a split second and never regretted.  (Trach? No effing thank you    Shriner's? Yes, please.)  There are decisions I regret. (Why one earth did I wait until she was three to take her to CHOP?  Why, oh why, did it take me so long to find the right school placement for her?)  But the ones that make me crazy are the smaller ones with no clear cut right or wrong.  When I don't have the answer, it drives me nuts. And I do not know any parent of a special needs kid who doesn't have this happen.

               For example, Feisty Pants had a weird day on Friday.  She was drowsy all day. Her nurse texted me all day from school because she was worried.  The teacher and aide at school were concerned.  Her sat rates were good. No serious temp.. No obvious symptoms except for this tiredness. She fell asleep at five thirty in the afternoon. Then slept until seven thirty the next morning.  I thought she was getting sick perhaps and expected to get up Saturday morning and have to try to find a doctor who was in. I came downstairs that morning literally googling walk in pediatrics on my phone.   Only to find Feisty Pants bright eyed and bushy tailed like nothing ever happened.

               So what was it?  A virus?  Feisty Pants is pretty tough and has had a nissen procedure (a surgical procedure for GERD that makes it hard for her to throw up).  So was it a minor tummy bug?  Hormones? Her cycle is due so maybeeeeeee.  She is on a new seizure med that she only takes for one week out of month.  Could it have been that?  Hell, was it allergies?  The pollen levels are 1800% higher this year. Migraine? Her sister and father get them but she is so damn tough would she realize it wasn't a usual headache? (Don't make judgy comments either- she already lives with chronic pain and yet rarely complains.  I'm not making light of migraine pain but more trying to explain exactly how effing tough this kid is.) Or was it simply the ennui of being fifteen and bored with us all?  

               To be honest- in the end, does it matter? She woke up right as rain and raring to go.  Am I just borrowing trouble to worry over a minor bump in the road? Am I making myself crazy worrying over an illness that's not going to happen?  These are things that I will drive myself nuts over.  Cause, obviously I don't have enough things to worry about that I need to go borrow a cup of anxiety.

                Meanwhile, Feisty Pants is binging superhero movies and yelling "hells yeah!" when Hippie Pants told me I was boring.  Go figure.