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

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.

Tuesday, August 16, 2016

Torn

                    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...

Tuesday, August 9, 2016

Trekking the Himalayas

            So here we sit in an E.R. sigh..... And our day started our so normally.  Feisty Pants seemed fine as she went off to school.   But within an hour or so, the nurse had texted that she seemed warm.  Then within an hour of that she texted that FP was pale and her sat rates were dropping. So home she came.  I didn't think she looked toooo sick. But I called the pediatrician to get her seen to be sure.  When told about her symptoms, he requested we take her the E.R.  annnnndd off we went.
          Not that I am  totally opposed to this place.  It's a good place.  It was nice to see some people who have taken very good care of Feisty Pants in the past.  But everything  takes effing forever here.  And I had to wake Goo after three hours of sleep.  And dinner in a hospital is never exactly a fine dining experience.  (Note to entrepreneurs -you could make a mint with a food truck parked outside any hospital, anywhere.)
            But here we sit over 5 hours later. We are on the second shift of nurses. We had the x-rays.  Her lungs are clear.  Had the urine test.  That's clear too.  Had the blood work.  It does show a slight increase in her white blood cell count.  There's an illness in that little bundle of awesome somewhere.   So I am hopeful we will be sprung from this hoosgow soon.   It's just that it takes forever.  We really could have done this in a doctor's office.  I do realize that the doctor would rather be safe than sorry.  But oy why does anything medical take so long?  Feisty Pants passed feisty and has achieved bitchy pants about an hour ago. If it weren't for the free wifi, I would be bitchy too.
            So, now it has been seven hours.  We have escaped.  The final verdict was a virus and a bronchial spasm.  No biggie.  Just bring her home.  Give tylenol as necessary.  Up her asthma meds for the night.  Keep her home from school tomorrow and check in with her regular doc to see if he wants to change or add anything.  Not a biggie.  But seven hours of non stop bitching, some of even from Feisty Pants (Gives that look to Goo...) has me feeling like we trekked across the Himalayas.  Barefoot.  Uphill. Both ways.  


Tuesday, August 2, 2016

A Day in the Life

        Typical summer's day in Feisty Pants Land.  FP goes to school year round. So tonight's a school night.  Feisty Pants is watching Karate Kid because cute boys, duh.
She sees a commercial for the next movie (on immediately after), The Amazing Spiderman 2.
Feisty Pants: SPIDERMAN!!!
Goo:  Well, it's shower night so you have to take a shower.  Do you want to take it now before Spiderman comes on?
FP: NO
Goo:  Well then, do you want finish this movie then take your shower and miss the beginning of Spiderman?
FP: NO
Goo:Well. Sweetie, pick one. Either way is ok, but you have to pick one.
FP: NO. Watch Both.
Goo: Sweetie, you have to take a shower tonight before 8 (She gets fed at 8 which involves being hooked to a machine.)
FP: Karate!
Goo: Ok, then we will go after Karate Kid.
FP: NO!!!!! SPIDERMAN!!!!!!!!!!
Goo: (in best patient dad tone) You gotta pick one or the other.
FP: NO! BOTH! (emphasized with kick)
Goo:  I don't know what to tell you sweetie.
FP: NO! BOTH! wash hair morning.
Goo (thinking he's calling in reinforcements):  Well, you would have to ask your mom. I don't know....
FP: MOOOOOOOOOOMMMMM.  SPIDERMAN!!!!!!
Me (because eff it, it is summer...): I suppose it would be ok.
FP: (Big smile to her father ) WIN!
Goo: You don't win this.  How do you win this?

FP: SPIDERMAN!!!  and funny.
Goo: How is this funny?!?
FP:I WIN.

Friday, July 29, 2016

Whew...

                   Whewwwww.  What difference a week makes.  The past ten days have been hot and crazy but incredibly productive.  My mother had surgery on her very broken neck and has been transferred to a rehab hospital.  Goo and I took Amara to Shriner's  Childrens Hospital in Philadelphia and they have agreed to do her scoli surgery.  So, since I spent the last post whining and bitching, I guess I ought to make this post about what I am grateful for.  So, in no particular order I am very thankful  for the following.
                    1) I am very grateful that my incredibly stubborn mother gave in and had her surgery.  I do not know what force of nature changed her mind, but may the heavens bless them.  She is doing very well for a spinal injury patient with bones of an ancient hummingbird.  The whole family is breathing a collective sigh of relief right now.
                   2)FP is REALLY happy with school this summer.  Her nurse is, as usual, awesome. We knew she would have a different teacher. So far they have all been great but I worry. (She had progressed/aged out of her last class.) She got a teacher she had before that she adored so the atmosphere for her is relaxed and comforting.  And she is really digging the summer's curriculum.
                   3) The trip to Philly went really well.  We were a little scared because of the traffic.  Coughcough DNfreakinC cough.   But the drive went swimmingly.  In fact, we  were early.  And then they took us in early instead of making us wait. YAYYYY  And then they agreed to do her surgery (sometime after Christmas) double YAYYY.
                  
                 So now, we have a ton of stuff to do to make arrangements.  And it's still  effing hot (are all you winter whiner's happy??) but but but, the major crises and obstacles are done and over with, and turned out remarkably well. I am so very thankful. You will have to excuse if I'm psychologically whistling while I work right now. Thanks for reading.