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.


Monday, September 12, 2016

Have Mercy

                 In case you were ever wondering why you should have mercy on strangers, especially strangers with feisty ones in their family, let me tell you about last Thursday. So, Feisty Pants has a severe scoliosis, most likely due to years of spasticity due to the CP.   We are fortunate in that Shriner's Hospital for Children has agreed to do her spinal surgery.  It's going to be a major surgery with a capital M and so there are several clearances we need to get beforehand.  Cardiology, pulmonology and primary care, to be exact.   Unfortunately, the Greater Binghamton Area is not known for its medical subspecialties (read that as not enough pediatric specialists) Syracuse is the closest area with any amount of pediatrics, but frankly, with a few exceptions, I am NOT impressed them on the whole. Especially for pulmonology.  (Read THAT as I almost punched the last pulmonologist who saw Feisty Pants there.) In the words of W.C. Fields, "on the whole, I'd rather be in Philadelphia."
                 Which brings me to last Thursday.   Shriner's, which has several hospitals across the country, has sent us to their Philly  location.  When we explained we had no cardiologist (FP never needed one) and no pulmonologist at the moment (I don't need an assault charge), they said they would send us to St. Christopher's Hospital for those specialties.   Last Thursday was the cardiology clearance appointment (ekg and cardiogram).  This involved, at best, a four hour trip down, a three hour appointment, and another four hours home.  We sleep in shifts, so this meant I was giving up some sleep by getting up early to leave on time.  This also meant Goo was giving up MOST of his sleep because he would be driving when he should be in bed.  We did not get the best circumstances.  Forget the minor traffic jam that made us half an hour late to leave Binghamton (accident on 17) where we got to sit on the overpass near our house and stare at our own neighborhood's rooftops for 30 minutes.   Forget the accident on the turnpike that added another 20 minutes to our trip south.  We got three quarters of the way down and the appointment coordinator was on the line to tell us the cardiologist had to cancel the appointment.  (Her husband had died.  We couldn't even be righteously indignant.) But since the coordinator is suberbly good at her job (and knew we had already driven almost four hours), she was arranging for us to be seen by another cardiologist so we were to drive to St. Christopher's and wait for her to finish arrangements. We which we did, after getting lost in Philly.  And no one wanted to give us directions.  I am sure they were all just deaf and it had nothing to do with my hubby's NY Giants tee shirt he was wearing. (Goo is one those rare men who will ask, mostly because otherwise I use gps and he has to take directions from me- which he hates)   But we made it.  Only to sit their hot cafeteria and wait for an hour and a half to get the call to be seen.  And then, when we went to register their computer system seemed to have a melt down over FP and her insurance and the Shriner's referral and that took an hour to fix.  And this is all before we saw the Doctor.   Who was lovely, and tried to make the appointment go as quickly and smoothly as possible.  But it did indeed, take all afternoon.   We never left the hospital until after six.  Just in time to hit rush hour on the way home.   Oh and it was a hundred degrees in Philly last Thursday, because why not be hot as hell when the day is long and hellish to begin with?

                  So dear reader, when you see a couple who look like crap and probably are sniping bitterly at each other, are carrying way too  much stuff and smell like coffee and angst, and have a feisty one in tow who is probably looking rather fed up too,  please have one of two things, mercy or bail money.   One or the other will definitely be needed.

Thursday, September 1, 2016


              Oh boy,  it has been a long, looooooonnnnngg hot summer.    I officially wilted in the humidity about a month ago.  It's hot enough at night that I have gone through all the books currently on my kindle app on my phone.   Feisty Pants has gleefully informed me that on top of being cheap and boring, I have now hit the icky parent trifecta of being smelly too.   She is only willing to be seen with me in public because she is a nice person.   Add to that several couples I know having problems, my mother literally falling down the stairs and breaking her neck, and a handful of long distance doctors appointments that involve Goo and I getting even less sleep.  Don't even get me started on the craziness that is this election cycle.  (Really, who nominates an angry Oompa Loompa?) What is it about summer that brings out the crazy of the Universe?
               So, anywhoo, in order to stave off the existentialist crisis that is the end of a long, hot summer, I am try to fill this post with gratitude and maybe make my world a brighter place.  So here goes -my list in no particular order.
1)  I am so grateful again to my amazing neighbors.  They are kind and awesome.  They help mow our lawn and shovel snow in the winter.  They even invite us to impromptu barbecues.  MORE THAN ONCE.  On purpose.  We are boring at best and annoying most of the time.  These people need beatification.
2) Feisty Pants' service coordinator has a thankless (and I am sure often tedious) job but yet is always kind, professional, effective , and cheerful.  I don't know how any social worker keeps their sanity but thank the gods that made them.  This woman can fill out paperwork in her sleep and jump tall insurance executives in a single bound.  Thanks for all you do.
3)  Goo pulled a magic trick out his hat and found some extension bars in order to "grow" Feisty Pants' portable wheelchair (the real one is not portable and no longer fits in a minivan) so we can get another year out of it and give the above mentioned ten foot tall and bulletproof service coordinator the year it will take to get the next portable one.
4)Feisty Pants' nurse (that's right, I'm talking about you, Hot Pants)  has done an amazing job with her.  Especially this summer. Whether she's making sure Feisty Pants gets all her services and therapies at school or finding a way to take FP swimming without me, Hot Pants has found some amazing ways to be there for my kid without making it seem like she's just a nurse doing a job.  This gives Feisty Pants a sense of enrichment and independence that FP adores.  And I adore Hot Pants for that.

           So there.  Done. Thank you Universe, for all of that.  I do feel better now.  And as for you, Feisty Pants, you know I smell like roses and unicorn glitter and awesomeness so just admit it or I will take a well deserved nap in your bed and make you smell me all night while you sleep.

Tuesday, August 16, 2016


                    You know, when you have a special needs child you spend your life torn.  Torn between anxiety and joy.  Torn between fear and hope.   Torn between wanting to wrap them in cotton wool and bubble wrap and protect them from the mean, ugly Universe and wanting to wrap the whole damn beautiful Universe up as a birthday present and hand it to them on a platter -pain, happiness, fear, hate, love, disappointment, exhilaration -all of it.   To be honest, you are like that with any child but a feisty one seems to up the intensity exponentially.
                     And, so today, I am really torn. To be more precise, Goo and I are now torn. One of Feisty Pants' pets has died.   He was a cat that we had found as a kitten under our back porch, starving and bedraggled, too neglected to run, too scared to come in.  Goo coaxed him in.  (The cat wouldn't come near me for weeks on account of my apparently being the Devil.)  When we took him to the vet for shots and neutering, she told us that he had developmental disabilities due to his neglect.  So I suppose his shortened life span (eight years) was nothing to sneeze at. Originally we were not going to keep him and looked to find him a good home, but Feisty Pants took a liking to him so he stayed put.  And now Goo has no idea what to tell her.  And he kind of doesn't want to tell her at all.  (Hell, he didn't even want to tell Hippie Pants and she's almost a real live grown up.) 
                      But this is where I differ.  I want Feisty Pants to have the whole damn world.  I want her to live and love and learn and share.  But sometimes living is messy.  And sometimes learning is hard.  And sometimes sharing seems difficult.  And sometimes loving means letting go or getting your feelings hurt.  And sometimes your beloved cat who knew how to rub his head just right against your hand and help you pet him goes and betrays you by dying.  And then I want to change my mind and wrap her up in cotton wool away from the Universe because maybe I am mean by expecting my children to ever face the world and we should all just give up and stay children in our blanket forts, coloring, for the rest of time.
                      Or maybe, the lesson pets teach us is that you never really know how long love -real, honest love for any fellow creature can last until they go away and you find you still love them and that is exquisitely beautiful in it's own way.   That love is caring and learning to let what you love grow and learn to dance away from you.  Maybe what is making me feel torn is knowing that I may need that lesson more than my feisty one.

                                  For Casper, wherever you are dancing, right now...