Saturday, May 28, 2016

Day One Million of Captivity (or day three of a five day weekend)

       So, it has been a bit of a crazy week here in Feisty Pants Land. (FeistyPantsLandia? Pantsadu? First People's Republic of Feist?  Anywhooo....) The week started out routine but as it got hotter and hotter this week it got crazier.  (Someone needs to turn off the summer oven, we are preheated already.)  People aren't sleeping well because of the heat. Everybody except me (I'm a ball of flaming sunshine. Shut up. I am too, dammit) is really cranky.   The school thought Feisty Pants had a seizure on Thursday and so she was sent home early from school.  She does not have a seizure disorder -we've had the EEG's to prove it. But she does have weird tics and fluctuating muscle tone and something a neurologist once described as random brain activity that can sure as hell scare every adult with in a mile of her.  And since technically any TBI patient will always have the risk of developing a seizure issue, home she came. We will now spend the next couple of weeks staring at her to make sure it was not a seizure.  So she was now hot and bored and tired of us grown ups "NOYING " her.  (Annoying her, said with her best adolescent sneer.)  Worst of all, she was supposed to get her hair done and now she has missed the appointment because adults are all so uptight.   The weekend is just turning into the Bataan death march if you ask her.
              Feisty Pants is simply a tortured soul.  She never gets to do anything ever.  She was punished by being sent home early to her boring house where there are no cute boys.  She has a four day weekend  (five if you count Thursday)  and nothing to fill the long boring hours.   She went fishing on Friday- with one of those cute boys from school.  But that doesn't count because she had to return back to her parental prison.  She went to Chuck E. Cheese today for her cousin's birthday party.  She loved it but then her parents made her go home again.  (Honestly, why hasn't someone called Children's Protective  Services on these monsters?!?)   We are having a cook out on Monday.  But she has seen the guest list and there is NO way her sister and the kids are going to count as a fun party.   Besides that's a million years and two days away and how will she fill the long, lonely hours until then?  Besides her parents have been trying to do something with state secrets or so it seems.  It seems to involve them always being on the phone complaining about medical records being sent where they are supposed to go just at the exact moment FP wants or needs their attention.   Then, when they finally get off the phone, they must get bored because they just insist on wasting all the good tv/toy/music /movie time with infuriating questions like "what did you need?" and "what can I do for you?". If they REALLY meant it, they would have hung up the effing phone the first time she yelled instead of just trying her patience.

            I mean, really, exactly how much can one innocent, never complaining , tirelessly devoted, loving adolescent have to put up with around here anyway??? 

Tuesday, May 17, 2016

Dinosaurs

             Feisty Pants was eaten by dinosaur this weekend.  And I wouldn't have it any other way.  Allow me to explain. She has an amazing nurse who goes to school with her.  Now, due to unexpected luck (and a LOT of paperwork on the nurse's and FP's social worker's part), her insurance pays for some after school nursing too.  Her nurse and I talked and decided to have her occasionally take her out (you know, as if Feisty Pants were a real live girl or something). This is a really big deal in a severely disabled kid's life.
             In some ways, FP has seen so much other kids never get to see.   The inside of a medical helicopter.  Window washers on the outside of a hospital playing peek a boo with little kids inside.  Sixty-five thousand bikers hauling teddy bears and barbies for the world's largest toy run right up to the Children's Hospital doors.  But also nights of 45 needle sticks, dozens of hospital stays, scary faceless masked monsters who don't understand her garbled speech and do painful medical procedures, adults and kids who get scared by her disability and shy away.  Scary moments when she cannot breathe that terrify both her and me.  But also traveling troubadours who go from hospital room to hospital room singing to anyone who lets them.  Strange dogs with almost miraculous empathy who lie next to kids and let them forget their illness for a little bit.  Complete strangers whose compassion for others make them seem almost like family.  Her life has been nothing if not interesting in weird and wonderful ways.
              However, this was not the journey I would have chosen for her. I wanted to bless my daughter with a boring, humdrum life of friends and toys and boys and barbecues and birthday parties.  Feisty Pants has those but in sometimes limited ways that make me long for her independence and autonomy. I want her to slam doors and make messes and initiate movement and rebellion and harmony all on her own.  Instead, she has a life of therapy sessions and doctor visits and year round schools.  I don't think she cares.  She's never known differently.  She is an inherently happy kid. 

              But this weekend, she went to a dinosaur exhibit.  Without boring old me.  And the baby t-rex tried to "bite " her.  She was thrilled. Just like any science nerd would be. She even got the oh so important t-shirt.   This weekend Feisty Pants was eaten by a dinosaur, and I wouldn't have it any other way.

Wednesday, May 11, 2016

Into the Sunset

            Well now, the circus is over for now. My parents have been and gone. It was a whirlwind week of lo mein and pizza, cinnamon rolls and donuts, birthday cake and scotcheroos. We all went out.  We all went shopping. We had a gazillion people come for pizza and ice cream cake.  Children were spoiled.  Toddlers showed off.  Faces were alternately kissed and stuffed. Awesome Pants pointed out to me that my sentence of the week appeared to be, "Umm, I have no idea what we are doing right now." A fine time was had by all.   But like any great circus, it's only temporary.  The show must go on.
           And sooo, the circus train has pulled out.  Packed up the elephant, took off the greasepaint, pulled down the big top.  In other words, the grandparents have returned to the hinterlands.  Back to Mayberry and houses that are NOT full of cookie crumbs (from the cookies they brought) or tantruming toddlers (who are angry that the ONLY people who truly get them have left) or a nauseous dog (because they kept feeding her pizza).  Feisty Pants was sad to see them go.  She has no choice now but to return to her fall back position of terminal teenage ennui.  She has sooo been there, done that, has the Hello Kitty tee shirt to prove it.
               It was a great show while it lasted.  There were clowns and a couple of clown cars. (It took two minivans to go out for Chinese.  We didn't go out so much as we invaded.)  There was a roaring lion (who was pissed off because her sister dared to suggest a dfferent store than she wanted.) There were daredevil  acrobats. (You try weaving through a living room full of almost twenty people, two toddlers, a baby and a dog to get to the only bathroom.)  There were funny clowns with blue noses.   (Fine, it was blue icing on the noses but it was still funny.)   There was even a properly mystified audience. (Me- I still have no idea how it all happened.)
                Feisty Pants has not been too terrible either.  She did tell us we were awful people because we made her grandparents go home.  But she has had no fits so I'll count this as a win.  

               So, Now it's back to the grind.  I'm not complaining, mind you. You don't appreciate boring until after the chaos hits. A few quiet weeks might be lovely.  I will miss them. We have even invited them to live with us, and they very nicely don't laugh in my face.  (It's probably elder abuse anyway...)   But for now, they ride off into the sunset where they have many miles to go and children to spoil before their journeys' end.

Sunday, May 1, 2016

An Apology in Advance

                So, whoop whoop whoop.  This is not a drill. Repeat- this is not a drill.   Grandparents are due in two days.  Repeat, grandparents arrival imminent. 
                Seriously, I apologize in advance.  The grandparentspalooza tour is incoming.  My parents will be here this week.  (What?  This week not this weekend, you say?  Yes.  But why?  Because school night bedtimes and rules are for squares, Narc, that's why.)  Feisty Pants is properly thrilled.  First, she got to run away and join the circus this weekend which she loved. They had clowns and elephants and peta protestors and everything!    Now she will get to go out for Chinese and go shopping and invite people over for pizza.  It's like she gets to pretend she is a real live girl and not some horrible prisoner of the most boring people on the planet.
                 And, so, I apologize.  My parents are coming to swoop in and behave like a cross between Tante Kringle and  smart alecky toddlers with credit cards and driver's licenses.  (What? It's three am and you want ice cream? Of COURSE, let's go!! Coffee flavored ice cream in a monster float? Why, yes you can! Your parents can sleep when they're dead. giggle giggle giggle )  They will not settle for being just a small party either.  They will get here and start calling my in-laws and invite them along. Feisty Pants for her part will adore this and get right into the spirit of things.  Staying up until the wee hours of the morning. (We cannot afford to miss a thing, now can we?)  Getting into the spirit of the party chaos. (Last year, she pulled out her g-tube in the middle of the Chinese restaurant and threw it.   Fun fact, they have a koi pond there.)  She cannot wait to show her new hair do with the pink streaks.  I hate pink and gender stereotyping- so my mother will give her money for doing it I am sure.  Life is no fun without a co-conspirator.   FP may have to share the squees with her niece and nephew, so we will see how she handles that.
               I am hopeful that she will not be obnoxious once they go.  Usually she is not tooooooo bad.  Not overtly rude but completely befuddled if things don't automatically go her way.  A week of being told you are made of rainbows and unicorn glitter and that the sun rises when you do and sets on your bellybutton does have its effects.  My mother once told me before I had kids that she "considered grandchildren revenge".  She was not kidding around.  You have all been warned.