Monday, July 18, 2016

Monday Monday Monday

               Oh, today been has the Monday-est of Mondays. Sigh... The cat peed on Feisty Pants' bed.  And her crash pad.   For the uninitiated, a crash pad is a large foam filled seat/mattress thingy.  Like a really big bean bag.  In our case, a futon cover filled with blocks of industrial foam. (Disabled kids often have seating and positioning issues and you have to get really creative, or rich.)   Notice I said industrial FOAM, you know like a sponge. Great for soaking up liquids. Took almost half a gallon of white vinegar to clean it. The cover is still in my dryer as I type this.  (Damn dryer is temperamental and old and cranky. I think it's balking at the heat and humidity.)
                Cheweverything Pants has decided we pay too much attention  to the cats and has taken to clawing her ear open randomly.  Just enough to make the house look like an episode of CSI:Veterinarian's Office.  (She has allergies and her ear itches.) We have now taken to buying veterinary superglue.  (Don't bitch at me, we tried EVERYTHING else- bandages, ear wraps, a homemade doggy babushka.  She MacGuyvered her way out of all of it.) 
                 Last week, my elderly mother fell down the stairs and literally broke her neck and is currently balking at the needed surgery.  I don't think she realizes that what she is risking isn't pain or life and limb but her independence that she values so highly.  She may have changed her mind by now.  I don't know.  No one has called me and my dad is certainly with her in the ICU where no cell phones are allowed.  (C'mon Facebook, don't fail me now.  Surely one of my gazillion relatives will post soon.)
                We did a small favor for FP's nurse and she did us a HUMONGOUS solid by giving us a gift card to a restaurant so we would not have to cook in this stifling humidity today.  So I promptly celebrated by dumping guacamole down my bra in public.  Go me.

               So dear reader, I don't mean to bitch or whine at you.   But Feisty Pants is a lot of work and anytime you have a disabled kid, EVERYTHING becomes more time consuming.  I live in awe of how anybody ever deals with more than one feisty kid at a time.  Or becomes a member of the sandwich generation and cares for a feisty one AND an elderly parent at the same time.   Those people deserve chocolate and lottery wins and big ass halos.   But if I am gonna be honest about this journey, I have to portray the good crazy and the bad crazy.  You gotta know some days will be effing MONDAY all effing day.   Don't worry though, it passes, it really does.  Fridays and bedtimes will come back again.  I promise.  I wish you all peace.

Thursday, July 7, 2016

In which Feisty Pants finally does something fun finally

                So I haven't posted in week or two.  Feisty Pants is out on break right now.  Usually that means we have a little more time to get things done, but not this break for some reason.   Which of course just means Feisty Pants is oh so bored to tears with her horrible, no good, old fart family.    I don't she how she manages.  It must be like being a prisoner in the boring wars.  Just ask her.  She will tell you. (Last week, she told her nurse we keep her locked in the basement just to be evil to her.)
                Not that I blame her.  We are just so totally evil.   First we managed to commit germ warfare and give her a mild summer cold last week.   I don't know how- she and her sister were the only ones to have it.  But she is sure it was us.  Just to keep her "tuck at home" (stuck at home) .  Forget that she actually was only mildly ill for a couple of days and still got to go on a train ride to Cooperstown with cute boys.  Or, as Feisty Pants gleefully told her sister, she went on the Hogwarts Express and her sister didn't.  But still didn't count 'cause we are EBIL EBIL EBIL (that's how FP pronounces evil).   
                 And forget the Fourth of July.  We cheaped out by deciding to have a sundae bar with cake and ice cream and then setting off an official crap ton of fireworks.  Why did we not have a full party?  And she has seen real fireworks on tv- these were not it. They didn't go into the air like real ones. Sheesh. And forget that she was giggling and laughing the whole time, Feisty Pants was just being nice.
                Do not even bring up yesterday at all.  We dragged her to Syracuse and got her salivary glands botoxed.  For which we should be raked over hot coals.  If it works and means she does not get pneumonia well fine, but that is not the point.  The point is we are mean and made her go see the local torturer to get her face stuck with the world's biggest needle. The sadist was quick too.  He kept jumping out the way when FP was trying to kick him right in his Ph.D.

                 But, today, oh today, we finally got things right.  We let her out of her tiger cage in the basement.  She went shopping with the nurse and found a new bathing suit.  ("All red, white and cute without peachy."  I think she means red, white and blue- cute without being preachy.) Then the nurse met us at a county park with a BEACH and SWIMMING and best all- CUTE LIFEGUARDS.  Hell, it might have made up all the torture we put her through on a daily basis.   She only had wait thirteen years for it.

Sunday, June 26, 2016

Beat the Heat

          Well now, it is well and truly summer.  Officially second level of Hades here.   In other words, we are miserable.  No one is getting enough sleep.  The heat seems to sap the energy right from your bones.  Feisty Pants has declared a moratorium on pants.  And I am too hot and crabby to fight her.  Our world has sunk to the two rooms we can keep cool with the air conditioner.  Our grill has become our kitchen.  Dinner has become ice cream and fruit.   Are all you weenies who whined about the cold spring happy now?   This is why we can't have nice things. 
          So, anywhoo, before I get too cranky and pull this whole damn house over, I'd thought I would list some beat the heat type tips.  (You're welcome!)
1)  If you have a feisty one or elderly relative or medical reason for needing cooling assistance AND your/their income meets the requirements, you can receive a fan or air conditioner through HEAP (Home Energy Assistance Program)   You will need to meet the income requirements and provide a doctor's note to prove eligibility.   The link for New York State info for that is here.  (Scroll down to cooling assistance.)
Don't live in NY? Google "cooling assistance, heap, + name of your state here".
2) Your freezer is your friend.  Freeze cut up fruit and use in water, teas, diy sorbets. Stick your top sheet in there for thirty minutes before you go to bed.  Throw your t-shirt in there before getting dressed.  Stick a bowl of ice in front of a fan .   Shove a popsicle stick into individual sized yogurt cups and freeze for diy fro-yo.   Let the kids have that for breakfast. (Ice cream -it's not just for dinner anymore.)
3)Water loves you too.  Get a cheap kiddie pool and use the hell out of it.  Let the kiddos splash morning noon and night.  Let the dog in the pool too.  Sit it there with them.  Let the neighbors laugh- you will cool off and you can claim it's good parenting.  Host a water balloon fight.  All the neighborhood kids will sing your praises. Teach those whippersnappers of yours that grown ups can win a watergun fight too. Definitely don't forget to water your insides too. Kids can dehydrate really quickly.  Make everyone drink a lot.
4)Do the heavy duty stuff first. Or last.   Do the heavy hard work first thing in morning or after the sun sets.  It's hot and miserable.  Don't make it worse by doing your life's heavy lifting under the merciless sun.

             So, there you go.  Try to stay cool. If you need us, we will be laying on our living room floor saying mean things about all you freaks who love summer and praying for the Pumpkin Spice Fairy of Autumn to come and save us from you all.

Sunday, June 12, 2016

Mojo Rising

               So, I was going to do a post on more diy father's day gifts.  We think are we are crafty here and I like to spread the fun.   But when I discussed this with Feisty Pants, she did not think it was good idea.  At least that's how I am interpreting the rolled eyes and shouts of BORING.  When I asked what she thought we should do about Father's Day, she told me politely that she had it covered and I needn't worry.  At least, that's how I am interpreting, "Mind BIDNESS, Mommy!!"  Thirteen is such a sweet, genteel age for girls.   Between the purple punk hair do and the kicks to my head when I am doing yoga, I do worry that Feisty Pants is such a demure wall flower.   However will I bring her out of her shell?
               Anywhoooo, when I did ask what we should write about this week, she seemed to think hair dye and make up would be perfect topics, because she is thirteen and well, priorities.  After all, next year she will probably be in a new class and they will have (dramatic drum roll please) OLDER BOYS, so we had better get on the stick and get our mojo flowing now shouldn't we???  
               So.  To that end here are three diy make up/hair/mojo ideas to while away the summer while waiting to get into that amazing class with those amazing boys so you (or yours) can shine like the sweet, shy, little butterflies you all are.
Homemade lip gloss-
you will need : 2tsp aloe vera , 2 tsp coconut oil, flavoring (1/2 tsp extract like vanilla or almond or cherry OR a few drops peppermint oil -heck get all fancy and combine a few!)
Mix together. Place in roller bottle.
Homemade hair dye-   you can get all fancy and make serious ones (google it if you like)  This is not it.  This a fun, temporary color that mostly shows in sunlight unless your hair really light (or really lightened) This is temporary and will wash out in a week or so, so you don't have to sweat whatever crazy color your feisty diva wants this week.
You will need:  a few packets UNSWEETENED kool-aid  (FP suggests grape this week) , hair conditioner, applicator brush, shower cap.  Vaseline if you are picky.
Wet hair (slightly damp).  Place vaseline around hairline and nape of neck to protect skin. Mix kool-aid into conditioner to form a paste (enough to cover hair say 1/4 to 1/2 cup), blending until all lumps are gone.  Brush onto hair with applicator.  Place hair in shower cap.   Now wait, like forever.  A few hours or even overnight if you are patient.   Rinse out and style as usual.  Color too light?  Try again with extra kool-aid.  Just remember, unless you are very blond, this is a tint, not a permanent color.
Strawberry face mask-  A great toner full of vitamin C
you will need:  6 (or so) strawberries, 2 tsp plain yogurt, 2 tsp honey
Mash strawberries into a puree, add yogurt and honey and blend well.  Apply to face and have a nice lie down (say 10-15 minutes). Rinse off with warm water and pat dry.
There now, you are beautiful, rocking cool hair, and have fabulous skin. Go get'em!

Thursday, June 2, 2016

In Which Feisty Pants Proves She is a Bad Ass

              The school where Feisty Pants attends is a school within a school that is separate from her home district.  She is in a specialized program designed for  disabled children that places an emphasis on independence and mobility.  It's called the MOVE program. If you are fascinated, you can google it.  I am too hot and tired to remember what the initials stand for at the moment.  (It's 80 degrees and muggy this evening.  All you summer lovers can officially bite me.)   Since it is in a county wide educational setting, the vocational programs are also taught on her campus.   This means FP has access to the cosmetology class at her school.  (Cue dramatic music and sound of thunder.)
                Feisty Pants has always been obsessed with hair.  She would hang holding onto mine as a baby.  When she was a toddler, I once cut my long hair to a shoulder length bob.  When she figured out I had done so, she gave a dirty look and smacked me.   She LOVES getting her hair done (or even played with), unlike her sister who thinks anyone touching her hair is committing a violation of the Geneva Convention.   When FP was an infant in the NICU, I would often come in to find that they had shaved some new part of her head (for the IVs) so I have always been hesitant to have it cut.  But Feisty Pants- who can hang out looking in the window at the cosmetology class ALL day if they let her- had a few ideas of her own.   Something she can control on her own?  Pretty much when she wants?  And it involves HAIR?  /Insert favorite expression of maniacal glee here/ 
                So, when she has been good, she is allowed to go make a hair appointment.  First, it was chopping off the length to get a cute bob.  Then she wanted a pixie cut.  I think the school was hesitant to allow her to get too wild.  They probably didn't want anger a parent.   But I am probably not most parents.  So on her last permission form I wrote "think rock star -it is just hair".   So then she came home a with a slightly edgier pixie with pink streaks.  And a belly full of giggles.  Then, two weeks ago she came home with purple hair.  Today, she came home with a few more purple streaks and almost a mohawk.  She is happy.  Pleased with her 13 year old bad ass self.  Full of "dig my hair, you wish you were as cool as me" attitude.  

                 In fact, she is so happy that I don't have the heart to tell her I had pretty much the same hair cut when I was seventeen. (She looks a lot better in it, though.)  So any of you guys around from back then when dinosaurs roamed the earth, don't tell her.  It will be our little secret from my favorite rock star rebel.

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.