Tuesday, November 29, 2016

French Fries

          Soooo, here I sit in one of the Ronald  MacDonald Houses of Philadelphia.  There are four in the greater Philly area.  We have stayed in three so far.   They are truly a hallmark of civilized society.  Being sent to a far away hospital is never fun, even when it's merely for testing like this. It is an amazing comfort to find a real bed in a quiet, safe place after a chaotic, stress filled hospital day. Every time I think Micky D's  is an awful fat filled institution, I remember the RM Houses and stick a damn french fry in my mouth and shut my fry hole. Anytime you want to feel truly noble, donate your time or even some money to a such a place. Even if you never hear it,  I guarantee some tired, stressed out family will be singing your praises.
          Goo and I brought Feisty Pants down to St Christopher's to see a pulmonologist and get pulmonary clearance for her upcoming scoliosis surgery. (We have several clearance hurdles to cross.) Getting said clearance involves getting a sleep study done.  We have been down this road three times before.  It's a twelve hour test. We are lucky if we make to hour eight because Feisty Pants is called Feisty Pants for a reason. She is very. well, feisty .  She usually spends her time during a sleep study by continually ripping off all  the leads and throwing them at us.  While proclaiming to all and sundry how much she disapproves of sleep studies.   I did the last three.  This time it's Goo's turn.  (They usually only let one parent stay for the test.)  So here I sit by myself in RMH.  It's weird to be myself, ever.   Goo suspects I am partying it up, reveling in the aloneness.  In truth, I find myself  at a loose end and bored with my own company.  If I were at home, I could clean and finish my gazillion emails, or at least play with the dog and pretend to clean, but here I guess I will write a few posts and, I hope, catch up on my sleep. But the enforced idleness makes me a bit anxious.  In truth, I spend so much time being Feisty Pants' mom first and foremost, that I don't really know how to deal with myself when I am not.



Sent via the Samsung GALAXY S® 5, an AT&T 4G LTE smartphone

Wednesday, November 9, 2016

W. T. F.

                    I wanted to make this post about the loveliness of November.  I even had it half written. I wrote about how the end of daylight savings makes me happy.  I wrote about how wet, windy, dismal weather is one of my happy places.  I wrote about how November is one the Universe's grand in between times that gives solace and refreshes the spirit of a tired, busy soul.  I wanted to wax rhapsodic about how the closing in of cold weather makes us all appreciate our loved ones more and naturally draws us all closer together.   But I can't, because somehow there is a CANCER IN THE AMERICAN SOUL AND WTF IS WRONG WITH US?!?!? 
                      Why the hell did we go and elect Mussolini 2.0?!?    This isn't a conservative/liberal argument.   There were plenty of conservatives to pick from.  We could have gone with any of them.   They had experience and education and all the hard ass bonafides (defund Planned Parenthood, no to the Dream act, lower taxes, etc. ) that any right wing pundit could love.   This isn't an antiestablishment argument.   Bernie Sanders was right there in the wings allowing any person with a populist bent to Feel the Bern and stick to the man- with grace and dignity and class.   Why the hell did we go for the a-hole who is a bully and anti-female, anti-immigrant, classist, and racist, and frankly, tacky besides?  At best, he is a bullying narcissist.   Quite possibly he is in the pay of foreign goverments. Quite definitely he is a thin skinned con artist.
                       And why, dear reader, you may ask am I harping on this in a blog about raising a disabled child??  Because of this- my child is among the most vulnerable in society.   People think that the disabled are not preyed upon by so called good people, but they are . EVERY DAY.  It happens when some jerk acts like my kid doesn't need the accommodations that he refers to as"special privileges".  It happens when some supposedly respectable citizen complains that they shouldn't have to pay taxes to "take care of her" as if they don't benefit from taxes I pay every day.   It happens when some bureaucrat tells me they cannot pay for necessary medications or doctors because there is not enough money in the budget meanwhile cutting taxes AGAIN for some wealthy a-hole.  
                       Most of all, it happens when the evil starts creeping in, slowly at first, when those in charge start muttering about the "takers" in society.   When supposedly decent human beings talk about "those people who just aren't like us".  When people continually confuse obedience with morals or ethics.  Or confuse flag waving with real honest patriotism.    If it is not stopped, it ends with discrimination becoming legal.  With those in need first starved financially of needed services.  Then just starved period.  All while supposedly "good citizens" turn a blind eye and a cold heart.

                        It may not come to this.  I hope it doesn't.  But it so easily could.  I am scared.  I am very angry.  And make no mistake.  To quote the Texas republican, "There is no honor in being a good Nazi." I am scared that not only is my child's way of life at stake. I am scared her very life could be at stake.   This is my CHILD. I will go down swinging.  The zombies are rising. I am tripping everybody.

Thursday, October 27, 2016

For Hot Pants on her birthday

        Originally, I wanted to make this post another fun Nerdoween craft post.  That one will be next time, I promise. I think.  (It's totally adorable if you believe me.)  Instead, I have decided to make this about Feisty Pants' nurse, Hot Pants.  It's her, umm, er,  29th birthday, give or take a few years, and I thought I would say what she means to us. So, Hot Pants, this is for you.
        Thank you, for all you do for her.  For taking Feisty Pants to school so she can get an education.  Thank you for taking her to school so she can get her therapies.  For taking her to school so she can make friends.  And scheme to hold a boy's hand.  And flirt with all the older boys.  Thank you for helping her to get her hair done so she can show us what a bad ass 13 year old she is with her multicolored mohawk.   Thank you for helping her paint her nails and go the salt sanctuary at the spa so she can enjoy being totally high maintenance. And taking her to the circus. And letting her get eaten by a dinosaur.  Thank you for  being a good nurse so I don't worry while you two are off gallivanting around doing all these things and so much more besides.
           I know, you're going to laugh this off and say, "Hey, it's cool. I'm getting paid."    But what you do isn't just getting Feisty Pants to school or getting her some much needed social enrichment.   What you are doing is showing my severely disabled child that having a rich, full, socially active life isn't just possible for her, it's downright normal.    I grew up with disabled siblings back when parents still had to sue just to get them into school.  You are showing my child that Monday means spa day.  And that school's are not just for education, but also girl talk and boyfriends and hairdos.   Just like every other frigging thirteen year old girl on the planet.  That is more precious than rubies and all the money in the world.  I would wish for you to win the lottery but then I am afraid you would retire.  So instead I will wish that you always find working with Feisty Pants fulfilling and working with her parents not too much of a pain in the ass. Thank you so much.
Happy 29th birthday!


Wednesday, October 19, 2016

Nerdoween, take one

                               Around here, we adore Halloween.   It really is the perfect holiday. There are no obligatory gifts or enforced closeness.  Don't get me wrong, I actually like giving gifts and seeing my favorite characters at the lunatic asylum, um er, I mean my family.  I just don't relish being told I have to.   You can be as social, or not, as you like for Halloween.  And we seem almost like a normal family. (Mwahaha)  Plus the Universe has seen fit to go ahead and do most of the decorating for you.  The leaves are beautiful.  The air smells fantastic.  There is the right amount of spooky chilliness in the air. Plus, chocolate, duh.  And pumpkins.  And cider. And every Halloween that Feisty Pants is not hospitalized is like Christmas and my birthday, anyway.   Then just when it cannot get any better, throw in ghost stories and nerdy cosplay.  
                      So, before Goo finds me passed out in the yard due to sugar intoxication, wearing one knock off ugg boot and a chunky sweater I stole from him and surrounded by empty psl cups from Starbucks, I figured FP and I ought throw a few posts together  about fun Halloween type crafts.   Hopefully I'll detox and be out of nerdoween rehab in time for the Christmas cookie binge.  In the meantime, have fun doing these crafts with your kiddos and pretending you're only doing it to be a good parent and not because its fun.
            
1) Handprint ghosts- you will need: Black paper, white paint, stick on googly eyes.
 Have the kids stick hands and/or feet in white paint and stamp onto black paper.  When dry, turn upside down (so toes or fingers are at bottom) and add googly eyes.  These are fun and adorable.  You could even make a bunch and clothespin to twine for a homemade spooky garland.
2) Pumpkin party favors- you will need: squares of orange tissue (or any thin) paper, green florist or washi tape, candy such as m and m's, candy corn, nuts, trail mix, etc.
Take a small(ish) square of orange paper (4 or 5 inches per side), place a handful of candy in center, gather up the corners and twist into a small ball  with a stem.  Wrap the tape around the top for a stem - this should hold it together.   You could even CAREFULLY draw a face on with a sharpie.
3) What would Halloween be without fun jack-o-lanterns???
 Find lots of amazing patterns here:

Saturday, October 8, 2016

Feisty Pants and the very bad, very long, no good week.

             Oy, so it has been a long, long week in here in Pantsadu (Feistyland? Feistypantsylvania? anywhoo...)  Feisty Pants is battling bronchitis, which has mostly run its course now. I think.  Fingers and toes crossed.   We are done with most of the extra meds and able to keep her sat rates where they should be so she is back to only on the oxygen while sleeping.   Which is lovely in theory, if she would only sleep this week.   We have a had a crazy few weeks and it has thrown her routines all off.   But two weeks of battling a nasty virus which meant two weeks of mostly being at home, and definitely missing school and therapies and life means not enough brain stimulation and therefore no more sleeping.   Which has meant we are not getting anything done.   Fair warning, if you show up to bitch about whatever it is we have forgotten to do, we are going to assume you are kindly volunteering to do said thing for us and will let you get right on it.
          Oh, and Hippie Pants is not helping. She took a tumble off her back stairs (perhaps that should get fixed finally, Mr. Landlord, hmmmm?) and gave herself a concussion.  Treatment for concussions around here seems to involve a SIX FRIGGING HOUR WAIT  at the medical establishment of choice followed by being given a list of symptoms to watch out for and a "Go get'em Tiger. You'll be fine." pat on the head.   Which is then followed by me throwing a temper tantrum on said medical establishment and respectfully suggesting they get off their asses and hire enough personnel to run their establishment properly.   I don't care if she is a grown up and has her own life and apartment.  That just makes me more determined to help. I hate when medical personnel act as if their time counts but ours does not.  Those six hours came out of our collective sleep and no one has the right to waste them but us.   That wait kept Feisty Pants up until 4 AM.  She is very sensitive to routines and any little bump will knock her off her perch, sleep wise.  So she had two hours of sleep on Thursday.  Which meant we all had about two hours of sleep on Thursday.
            We were able to finally get her out and about with her nurse yesterday.  (Of course the day FP is well enough to go back to school, the school goes on a four day weekend.) So Feisty Pants had a pretty good day yesterday.  Too bad that was NOT followed by a pretty good night.  She literally has had no sleep and is now cranky and moody as only a tired teenage girl can be.  But we are done with some of the extra meds, most of which can make kids jittery and antsy so I hope that and slipping back into a normal routine will just help us all just CTFD.  The Goo has finally managed to crash and will catch a few hours today.  I am hoping that this will just be a phase we are all going through.  Otherwise, I am just gonna say the hell with all of it and break into the Halloween chocolate and you will all have to look out for yourselves.

Sunday, October 2, 2016

October Blues

             Damn.  It's October again.  Don't get me wrong, I love October.  I love it almost as much as I love November.   October looks like it's dressed up for a dance, all beautiful colors and alluring scents.   The nights are cooling off and the days do not act as if the earth has a fever.    The wind seems to be practicing for Halloween.  And don't even get me started on Halloween.  I adore it in ways beyond mere nerdy cosplay fanaticism. It's the one night of the year my crazy family doesn't stand out in some weird, Addam's Family meets Tim Burton meets nerd kind of way.    I just wish we had a different way to celebrate the Autumn harvest. 
                    Most families do some or all of those cutesy, wholesome, family values kind of things.  They go apple picking.  They go to a pumpkin farm.  They have annual cider and donut nights.  They may even don comfy sweaters and roast marshmallows over their backyard firepits.  They rake their leaves and clean up their yards and get ready for winter. And I envy all of them.  The self righteous bastards.  
                    We celebrate fall differently.  Oh sure, we argue over football. (I'm in a mixed marriage- Steelers versus Giants) We try to get to a pumpkin farm and feed one of the kids to a goat.  We argue over yardwork until its done, usually after I threaten to go on strike and  make everyone eat pb and J sandwiches for dinner for an entire week. But mostly we get sick. Every frigging year.  Like clockwork.  It goes a little like this-  Hippie Pants (yes, Hippie Pants)  gets good and sick and then gives it to EVERYBODY else.   This is because Hippie Pants, in spite of all my best efforts to raise her properly, insists on being one those weird people who actually likes, and is affectionate towards, others.  I blame her father.  Lord knows I did the best I could.  But still, there that child goes, tripping across the Universe, hugging all and sundry until OF COURSE she gets whatever virus brews right when kids go back to school.   Which she then shares with everybody.  Including, naturally, Feisty Pants.   So we then celebrate October with doctor visits and ER visits and, sometimes, hospital stays. So this years flavor of yuck is a cold, followed by an after hours clinic visit (to get an antibiotic) for the secondary sinus infection.  Not a big deal I thought.  HA HA HA.

                    This years cold is the gift that keeps on giving.  So it has turned into bronchitis.  And an asthma attack. On a Saturday, thus precipitating the annual ER dash.  So three needle pokes, one iv, two x-rays later, we were sent home (at least, that went ok...) with prednisone, and another inhaler, and instructions to stay on the O2 until  we decide to cut our nonsense out and get better already. So we are now stuck at home for the time being.   Just when we figured out how decide which kid to feed to the goat.   

Saturday, September 24, 2016

Speak for yourself

               So, Feisty Pants, Goo and I checked out Speechless the other night.  For those of you who haven't seen it, Speechless is a comedy on ABC that is about a disabled teen and his family.  It's awesome, btw, mostly because it  doesn't try to be syrupy or "inspiring" or any of a thousand things that, as the parent of a disabled child, would make me want to hurl.  I highly recommend it and the first five minutes of the first episode (the car ride) is the most honest portrayal of what it's like I have ever seen.
               I think what I like best, besides the fact that the actor portraying the disabled teen IS a disabled person, is that the fact that he is a slightly obnoxious, mischievous, smart alecky teen.  Just like every other teen on the planet. Of all the ways the world is prejudiced against the disabled, the one I hate, hate, motherloving HATE the most is the quiet, smug, demeaning lowering of expectations of the disabled.  It drives me crazy.  I honestly wonder how many doctors, lawyers, teachers, actors,artists, or (insert every effing other profession on the planet here) we have lost because we could not really expect so much of "the poor dears".  So we did not have to educate them.  Or equip them with what they needed to interact with the world at large.  Or let them leave a segregated setting.   Or let them decide what to do with their lives or even decide what to do with their own damn day to day existence.  I hate when people don't automatically take the desires of the disabled into account along with their needs.  It's rude at best, and frankly, just one more form of abuse in my opinion.
                Feisty Pants, for her part seems to take in stride.  In a smart alecky, slightly obnoxious teenager kind of way.  Her speech is garbled so, instead she has perfected her side eye to let you know she is annoyed.  If you talk down to her, she is very polite.  While she signs completely obnoxious answers she knows you won't understand.  She is perfectly capable of looking like she is about to burst into tears until you give whatever she has decided she wants, and then, when you have given it to her and left, look at me, smile , and say "see?" like she hopes I'm taking notes about how to get what you want.  In fact today the little Moriarty figured out a way to hook her food pump with her foot and bring it (AND THE METAL IV POLE IT WAS ATTACHED TO) down on to my head while I was  trying to pick her up and move her.  And I'm sure once she has succeeded in offing me, she will smile politely at the jury and they will let her off because "of course that poor dear could not have done such a thing.  She wouldn't be able to figure out how to do it."   You have all been warned.