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.

                

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.

Summer

              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.