Having Words

                                I mentioned in (on?)  this blog a while ago, that one day I would say why a dirty word is my favorite word.   For some reason, today I feel ready.  Probably because it's been hectic and a little busier than our version of normal. I find myself a little tired and overwhelmed. When you have a disabled kid, especially a complicated one like Feisty Pants, there's a sense of urgency about getting every damn thing done now, like right NOW,  because a part of you knows you will never get back to it.  My favorite word is in many ways about love and defiance and right now I feel the need for a shot of defiance much the way we want an extra shot of espresso to handle that afternoon energy slump. 

                               So, the story is actually Goo's.  It's from his perspective.  When I was in labor with Feisty Pants,  the placenta abrupted ( the placenta separated from the uterine wall before it was supposed to) and it got hectic quickly.  Feisty Pants stopped getting oxygen and her heart stopped.  I hemorrhaged and bled out. We both died, basically, in childbirth.  Goo, who had been shooed out of the operating room was watching through a small window as all hell broke loose.   He said the surgeon was working on me and the respiratory therapist was doing cpr on Feisty Pants.  After a while, the doctor looked at the rt and said, "Do you want to call it?" (Meaning call her time of death) 

                                The respiratory therapist says, "No" and keeps working.

                                Goo said after what seems like a million years, the doc looks at the rt again and says, "Do you want to call it?"

                                The rt says, "NO" and keeps working.

                                After yet another million years, the doc says, "I SAID, Do you want to call it?!?"

                                Goo says the rt whipped his head up, looked Goo right in the eye and says very clearly so all could hear, " You can fire me tomorrow but FUCK YOU, NO!"

                                And like that, Feisty Pants' heart started beating again.

                                                                                                                        

                               So you can all say what you want about swearing and manners and civility.   You can say all you want about goodness and light and love.  Sometimes love comes in weird and wild ways. Sometimes it's not the kind word or sweet gesture that makes the difference. Sometimes defiance is a form of love. Sometimes stubbornness is a form of caring for your fellow creatures. Sometimes, in the darkest of moments it's the human being who is willing to defy the odds and face the storm with you, even if only for a moment, that makes it possible to stand back up and put one foot in front of the other.  Sometimes "fuck you, no"  sounds an awful lot like love..

BTW for those who heard this and asked- we never even knew his name. Hubby hugged him later but forgot to ask.   Someone at the hospital did tell us he had moved away soon afterwards.   I like to think he is out there somewhere spreading love and f bombs like they're glitter. 

Also BTW- if you are reading this and it was you, thank you.

The Busy Season

                             Soooooooooo, it's been about a month since my last post. We've been crazy busy.  Feisty Pants had oral surgery. Four impacted wisdom teeth, One other molar attached to one of her wisdom teeth.  Two premolars that grew through the roof of her mouth because her mouth is small. Feisty Pants is fun sized- so everything about her is a little too, well, little.   The oral surgeon was an optimist. The office expected her to be in and out and on her way in one day.  After anesthesia. Oh, they were a hopeful bunch, those guys.   The anesthesia irritated her lungs and, coupled with a little more bleeding than expected, ended up causing a four day hospital stay.  Which Goo and I totally expected going in. Otherwise though, FP sailed right through.

                              And we are getting ready for more anesthesia.  Feisty Pants needs to have a CT scan to check her hardware. (She has had a complete spinal fusion and is robokid.)  She either cannot or will not sit still -it's kinda hard to tell which and a moot point anyway, so under anesthesia she goes. No biggie really, but this means paperwork and clearances and out of town trips again. I literally had a message from one doctor's office that said, "We want you to get the authorization first before we give the authorization so the authorization does not expire too early for the authorization."  The craziest part of that is that I understood it.

                              And it's IEP season- for uninitiated that means meetings and paperwork as the school plans her therapies and goals for next year.  Which will either be tense or simple based on whether or not the school is trying to cut back on therapies again. I fully plan on being a pain in the ass about that. This is NOT a kid who needs LESS therapy. Her school has a whole day they set aside for these meetings.  I just found out the day is tomorrow.  As far as I know I don't have a meeting- but someone might have just forgotten to notify me and I won't know before tomorrow anyway. 

                               And it's prom season.  Feisty Pants is over sixteen  and thus, eligible to go to her school's prom. EVERYTHING is about the prom for her right now. She got a pixie cut so she would be cute.  She insisted on dying said pixie cut lavender so she would look fab and "tand out". (Stand out)  She has two dresses already but just might want something else- she has not decided. She changes her mind daily on what adult she will allow to take her (someone has to suction if needed) because she doesn't really want any of us cramping her style on her big night. I love it when she is so excited about anything, but this is strange to me.   I was indifferent to such things as proms. But FP thinks she's frikking Cinderella. 

                              And we are losing our direct service person. Care giving is a hard job in a million different ways and she is moving along to another.  I wish her well. But this does mean we are going to be finding another member for our team- which is harder than it sounds.  You have to find the right fit or the chemistry of the team just goes all awry.   Plus it's spring.  That's the bi-polar season of snow one day, seventy degrees the next, and raining pollen and mildew spores all the while. Not normally her best time of year, but so far so good. It's almost like the kid has been too busy to remember to get sick.  I cannot really complain- it just seems like we don't stop to catch our breath anymore.

                             Originally, I had the idea of making this post about the importance of self care for caregivers.  That will probably be next time.  I just gotta remember what the heck that is again. 

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.