Holidaze, take one

               Okies now, so I totally have not been pouting and worrying about the election (Fascism can be fun!) and I certainly have not been procrastinating, like, at all. I swear.   It's mostly that we have just been crazy busy.  Dragging Feisty Pants to sleep studies, and doctors appointments.  ( The latest cold has turned into three doctor's appointments and two rounds of antibiotics.)    Then there is Christmas gifts to make and buy.  Cookies and baking and all those fun chemistry accidents we like to call cooking around here.  And real live snow days with snow and everything. And planning a trip to my folks. And beginning arrangements for the next trip to Philly for the next round of tests for Feisty Pants' upcoming scoli surgery.  And Feisty Pants has discovered her no longer hidden talent for talking smack so we all have to drop everything and watch football so she describe the game to us.  ("Look at da score Goo- you LOSIN'!!!")  And a few Christmas parties already.  And, yes, right on cue someone did throw up and end up in an ER- so it is officially the holidays now!

               So, before we get too frenzied, or too fed up and actually start the revolution, I thought would take a moment and make a post or two about something normal like being a parent or fun things for kids to make for the holidays.  In no particular order- here a few fun crafts to make with the kids.  They are fun and cute and just might make good gifts for the grandparents or aunties or whoever is still left to cross off the list.

 

1) Sugar hand scrub-  you will need  a small fancy jar  about 8 oz (mason or otherwise), 3/4 cup (or so) sugar, 1/4 cup olive oil, enough liquid soap to fill jar (I would use liquid castile -think Dr. Bronners, but really any would do) Essential oil in any scent you like (optional)

Pour the sugar into the jar. Add the olive oil. Stir carefully.  Top off with liquid soap. Add 15 to 20 drops essential oil.   Stir again.   Add a cute tag and ribbon.  Easy peasy- and very charming.

 

2) Peppermint ornaments-  you will need peppermint candies, alumnium foil,  ornament hooks or paperclips, ribbon or twine.  (This one needs adult supervision- or a dad- either way)

    Line a cookie sheet with foil.  Unwrap candies and place close together in a design you like (stars, flowers, wreath, homunculus glob, whatevs).

Bake at 325 degrees for about five minutes (maybe longer but start checking on them then)  When the candies have melted together but still mostly retain their shape., it's time to take them out.   Allow to cool.  While still soft (here comes the really adult part) insert the hook partially into the candy to form a hook or loop from which to hang.  Hang with the ribbon or twine when totally cooled.  Looks adorable.  Smells like Christmas!

 

3)Bubble bath paint- you will need an empty paint container (like the kind you get in a kids art set) or small empty jars (baby food jars might work),castile soap (or clear baby shampoo), cornstarch, food coloring.

  Note- there's not a lot measuring here.  It all depends on much you make, so start slow and eyeball it.

         Place the soap in a mixing dish- (enough for all the colors) Add cornstarch about a TBS at a time and stir very well.  When it feels like the right texture for paint(think craft paint) you're done.  Place into individual containers and stir in food coloring until you get the color you want.  

         

         Happy crafting!

 

French Fries

          Soooo, here I sit in one of the Ronald  MacDonald Houses of Philadelphia.  There are four in the greater Philly area.  We have stayed in three so far.   They are truly a hallmark of civilized society.  Being sent to a far away hospital is never fun, even when it's merely for testing like this. It is an amazing comfort to find a real bed in a quiet, safe place after a chaotic, stress filled hospital day. Every time I think Micky D's  is an awful fat filled institution, I remember the RM Houses and stick a damn french fry in my mouth and shut my fry hole. Anytime you want to feel truly noble, donate your time or even some money to a such a place. Even if you never hear it,  I guarantee some tired, stressed out family will be singing your praises.

          Goo and I brought Feisty Pants down to St Christopher's to see a pulmonologist and get pulmonary clearance for her upcoming scoliosis surgery. (We have several clearance hurdles to cross.) Getting said clearance involves getting a sleep study done.  We have been down this road three times before.  It's a twelve hour test. We are lucky if we make to hour eight because Feisty Pants is called Feisty Pants for a reason. She is very. well, feisty .  She usually spends her time during a sleep study by continually ripping off all  the leads and throwing them at us.  While proclaiming to all and sundry how much she disapproves of sleep studies.   I did the last three.  This time it's Goo's turn.  (They usually only let one parent stay for the test.)  So here I sit by myself in RMH.  It's weird to be myself, ever.   Goo suspects I am partying it up, reveling in the aloneness.  In truth, I find myself  at a loose end and bored with my own company.  If I were at home, I could clean and finish my gazillion emails, or at least play with the dog and pretend to clean, but here I guess I will write a few posts and, I hope, catch up on my sleep. But the enforced idleness makes me a bit anxious.  In truth, I spend so much time being Feisty Pants' mom first and foremost, that I don't really know how to deal with myself when I am not.

Sent via the Samsung GALAXY S® 5, an AT&T 4G LTE smartphone

W. T. F.

                    I wanted to make this post about the loveliness of November.  I even had it half written. I wrote about how the end of daylight savings makes me happy.  I wrote about how wet, windy, dismal weather is one of my happy places.  I wrote about how November is one the Universe's grand in between times that gives solace and refreshes the spirit of a tired, busy soul.  I wanted to wax rhapsodic about how the closing in of cold weather makes us all appreciate our loved ones more and naturally draws us all closer together.   But I can't, because somehow there is a CANCER IN THE AMERICAN SOUL AND WTF IS WRONG WITH US?!?!? 

                      Why the hell did we go and elect Mussolini 2.0?!?    This isn't a conservative/liberal argument.   There were plenty of conservatives to pick from.  We could have gone with any of them.   They had experience and education and all the hard ass bonafides (defund Planned Parenthood, no to the Dream act, lower taxes, etc. ) that any right wing pundit could love.   This isn't an antiestablishment argument.   Bernie Sanders was right there in the wings allowing any person with a populist bent to Feel the Bern and stick to the man- with grace and dignity and class.   Why the hell did we go for the a-hole who is a bully and anti-female, anti-immigrant, classist, and racist, and frankly, tacky besides?  At best, he is a bullying narcissist.   Quite possibly he is in the pay of foreign goverments. Quite definitely he is a thin skinned con artist.

                       And why, dear reader, you may ask am I harping on this in a blog about raising a disabled child??  Because of this- my child is among the most vulnerable in society.   People think that the disabled are not preyed upon by so called good people, but they are . EVERY DAY.  It happens when some jerk acts like my kid doesn't need the accommodations that he refers to as"special privileges".  It happens when some supposedly respectable citizen complains that they shouldn't have to pay taxes to "take care of her" as if they don't benefit from taxes I pay every day.   It happens when some bureaucrat tells me they cannot pay for necessary medications or doctors because there is not enough money in the budget meanwhile cutting taxes AGAIN for some wealthy a-hole.  

                       Most of all, it happens when the evil starts creeping in, slowly at first, when those in charge start muttering about the "takers" in society.   When supposedly decent human beings talk about "those people who just aren't like us".  When people continually confuse obedience with morals or ethics.  Or confuse flag waving with real honest patriotism.    If it is not stopped, it ends with discrimination becoming legal.  With those in need first starved financially of needed services.  Then just starved period.  All while supposedly "good citizens" turn a blind eye and a cold heart.

                        It may not come to this.  I hope it doesn't.  But it so easily could.  I am scared.  I am very angry.  And make no mistake.  To quote the Texas republican, "There is no honor in being a good Nazi." I am scared that not only is my child's way of life at stake. I am scared her very life could be at stake.   This is my CHILD. I will go down swinging.  The zombies are rising. I am tripping everybody.

For Hot Pants on her birthday

        Originally, I wanted to make this post another fun Nerdoween craft post.  That one will be next time, I promise. I think.  (It's totally adorable if you believe me.)  Instead, I have decided to make this about Feisty Pants' nurse, Hot Pants.  It's her, umm, er,  29th birthday, give or take a few years, and I thought I would say what she means to us. So, Hot Pants, this is for you.

        Thank you, for all you do for her.  For taking Feisty Pants to school so she can get an education.  Thank you for taking her to school so she can get her therapies.  For taking her to school so she can make friends.  And scheme to hold a boy's hand.  And flirt with all the older boys.  Thank you for helping her to get her hair done so she can show us what a bad ass 13 year old she is with her multicolored mohawk.   Thank you for helping her paint her nails and go the salt sanctuary at the spa so she can enjoy being totally high maintenance. And taking her to the circus. And letting her get eaten by a dinosaur.  Thank you for  being a good nurse so I don't worry while you two are off gallivanting around doing all these things and so much more besides.

           I know, you're going to laugh this off and say, "Hey, it's cool. I'm getting paid."    But what you do isn't just getting Feisty Pants to school or getting her some much needed social enrichment.   What you are doing is showing my severely disabled child that having a rich, full, socially active life isn't just possible for her, it's downright normal.    I grew up with disabled siblings back when parents still had to sue just to get them into school.  You are showing my child that Monday means spa day.  And that school's are not just for education, but also girl talk and boyfriends and hairdos.   Just like every other frigging thirteen year old girl on the planet.  That is more precious than rubies and all the money in the world.  I would wish for you to win the lottery but then I am afraid you would retire.  So instead I will wish that you always find working with Feisty Pants fulfilling and working with her parents not too much of a pain in the ass. Thank you so much.

Happy 29th birthday!

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:

Pumpkin Templates

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.

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.   

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.

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...

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.  

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.

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.

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.

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.

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.)

NYS 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.

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!

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.

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??? 

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.

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.

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. 

               

Happy Belated Earth Day!

        Ok, so I meant to post this on Earth Day.  But,since I already gave the world an amazing earth day gift on the twentieth anniversary of the first Earth Day, I was babysitting so the gift could go out for her birthday. (I gave you Hippie Pants.  She is very green and wants to save allllll of you.  You're welcome!)  And, since both Dinky Pants and Mellow Pants are both under two, they spent the evening taking turns shrieking and throwing up and/or spreading mucus everywhere, so I got nothing written  We were busy being very earthy here. 

        Oh well.  It really doesn't make a huge difference as I am always at least a day late and a dollar short.  Everyday should be earth day, anyways. We should already be reducing, reusing, and recycling.  It's not just better for the earth.  It's also better (and cheaper!) for us. So with that thought in mind, here are a few upcycled and green toy ideas.  They are easy, fab, and definitely green.  (Bonus, doing this with your kid counts as good parenting.  You're welcome again.)

 

1) This my favorite- got a big cardboard box?  Got crayons and/or markers?  Got a kid?  Put the kid in the box with the crayons.   Tidy house or surf net or sip lattes while he is busy. Admire artistic endeavors afterwards.

 

2) This is a great link to a slideshow of easy diy toys made from cardboard  boxes and tubes from the DIY network.  There are a few really clever playhouse ideas if you have a BIG box.

 DIY Network Fun with cardboard

3) Water painting- great for little ones and very zen.  All you need is a container of water (a sand pail or bowl) and a brush.  Some colored paper if you want to be all fancy.  Just let the kid take his "paint" and brush outside and go to town.  Best of all  -no clean up. If your kid is really clever, you could teach him the idea of "art as an exploration of impermanence", because if they don't learn pretentious nonsense at home they will only pick it up in the streets and then where will they end up?

 

4)Diy Cd hovercraft- this one is a great for older kids to make. Everyone will have fun playing with it.  You will need the flip top from a dish soap bottle, a cd, a balloon, and a glue gun.  Instructions are here from the Chocolate Muffin tree.

CD Hovercraft

  

           So there ya go.  Hope you have fun.  And please, do reduce, reuse, and recycle.  There is only one Earth and we do have to share it.

Sh*t special needs moms say

        The great saint Erma of Bombeck once defined mother tongue as the only one that ever has to say, "Did you flush?" Since she and the Blessed Mother Rosanne are two of my favorite holy women, I thought I would make this post about all crazy, funny stuff I never thought I would say (or overhear) I hope this garners a few laughs and not phone calls to CPS. 

1) "If you pull that out of your shin, the doctor will just have pull out his drill and put another hole in your shinbone." (Said with a really exasperated tone.) Didn't work, she pulled out the IO anyway. Doctor did, indeed, pull out the drill again.

2) "Please stop trying to feed your g-tube to the dog."  The sad thing is, I have this sentence on repeat in my playlist. 

3)"Sweetie, can you go get me your sister's k-y jelly out of the medicine chest? Can you hurry? " In a million years, I'd have never thought I would say that once. EVER. Now I have said it about a hundred times. (See above.)  It's what we use to put her g-tube back in when Feisty Pants yanks it out.  You should see the looks on the faces of people over that one.

4)"Did you just say motherf@##=¥?  I'll give you a hundred bucks to say that to your speech therapist! "  Not sorry. No regrets on this one.

5) "Please don't punch the dentist this time. You know it upsets him."  This one wasn't me. I'm fine if Feisty Pants ONLY punches him.

6)"OH DEAR GOD WHAT HAVE YOU HEARD?!?" Said to me by another mom whose feisty one ran up and introduced herself as one of FP'S friends. Upon hearing her name, I mentioned that I had heard about her.

7)"Listen, it's fine if you don't want to wear your underwear, but you will not wear it for a hat."  Again, this one was not me. I overheard it in a locker room after aquatherapy.  And I'd probably let her wear it as a hat.

8)"Nahhhh, but my sister's got a femur of titanium."  This was said to me not by a mom but by a special needs kid.  His mom (who had two kids with brittle bone disease.) and I were chatting about holidays missed due to hospitalizations. This was his response when I told the mom she must have an iron spine.

9)"For a doctor, you're an idiot."  I overheard this one in a pediatric ER.  I am not sure what prompted it, but that mom is my hero.

 

So, what's the funniest thing you've ever heard come out of your mouth?

 

 

A blessed moment of boring

       Hallelujah, we are back at school.  Which means Feisty Pants is back in her therapies. Back to physical, occupational, visual, and speech therapies. YAY. Plus gym. Plus regular classes. Plus friends. Plus cute boys. She even came home on Friday and told me she had been kicked off the bus for two days for swearing.  I was shocked- just SHOCKED,  to find out she was pranking me because it was April Fool's day.  I didn't stop to think at all that the two days were Saturday and Sunday so no school anyway.  (Don't tell her.  It will break her heart to think she didn't fool everybody. She laughed for an hour at her own cleverness.  After all, we adults are old and stupid.)

        Best of all, she is finally sleeping (cue angels singing and harps strumming) so maybe, just maybe we old farts will catch up on some sleep too.  (What did I ever do to you, anyway, Morpheus? Why do you mock me so?)   It's going to cold here for the next week too. YAY!   (Listen, all you warm weather lovers can bite me.  I watch you all swanning about all summer as if we weren't stuck in the first level of Hades while I lay on the floor and melt into the floorboards.  You can all give me one week of bliss and sleep.) Here's to hoping the cold kills off the mildew and Feisty Pants allergies are beaten back into submission a little bit too.

           So, here we are in a glorious little in between time.  No holidays, no birthdays, no parties to throw for a few weeks yet.  (The grandparentspalooza will roll into town in a few weeks or so. I apologize  in advance for Feisty Pants attitude afterwards.) No major doctor issues.  Just a routine g-tube change. Too cold for yard work yet.  No major medical procedures scheduled until the summer. So we will just try to catch up on sleep.  Figure what paperwork we are surely behind on. (There is ALWAYS paperwork with a feisty one.)  Argue over what TV show to watch.  We may even get to pretend to be normal for a change. Heck, I may pretend to do a craft or too.  I haven't sent Feisty Pants in with blue dye on her fingertips in while.  It's always fun to make the staff at school freak out because she looks cyanotic.

          So, here's to a little moment of blissful nothingness.  May your hectic times be brief. May you catch up on sleep.  May your messes have been worth it.

And the party continues

         Ain't no party like a Feisty Pants party cause a Feisty Pants party don't stop.  Until five o'clock in the effing morning.  Sigh. Can you tell there is a vacation this week?  If you ask most parents of school age children, they will admit it's just easier when they are in school.  Sure, everybody's got to get up the morning but you trade off that for getting stuff done.  I wasn't normally like that.  Hippie Pants has always been part vampire/bohemian/nightwalker and would sleep until noon if you let her.  Summers and vacations were a breeze.  I always got up before she did and had time for a cup of coffee before having to deal with another human being.  And she woke up like me.  So there was a gradual acknowledgement of any others and it gives you time to acclimatize to the fact that other people exist and one might have to deal with them occasionally.

            Feisty Pants, however, is NOT like that at all.  I blame her father.  When left to his own devices, he wakes up early and cheerful.  Honestly, he should be in a zoo.  Or at least in a cage, safely away from normal people.  He might inflict his cheeriness upon them. Feisty Pants is the same way.  Early to bed and early to rise is her motto.  And get out of her way, she has things to do.  And she does, indeed insist on being quite chipper in the am, just to be spiteful.  Except when she is on break.  You see, when you cannot move or see properly, you brain does not get the everyday workout it naturally craves.  (That's why blind people tend to rock and sway.  The brain is craving input.)  When Feisty Pants is on break there is no physically therapy, no occupational therapy, no visual therapy, no speech therapy, no gym.   And right now- no aqua therapy or massage.  All we have this week is music therapy. So even when we try to entertain her, her little grey cells are bored to tears.  In the past week, she has been to two parties, gone shopping three times, cooked with me, and watched a gazillion movies.  And today is Easter.  Yet, she is still so craving brain stimulation that she is now staying up until the wee hours of the morning. Seriously, we have seen 1 am every night.  And three and five am are not unheard of.  The only people who should be awake at three am are vampires and cat burglars.  I could sort of see it (she is thirteen after all) if she then slept til noon.  But alas, no.  Seven am is her preferred wake up time and that is written in effing stone.  So now FP is bored and cranky.  I would kidnap her therapists and teachers if I knew where they lived.   I would not be convicted by a jury of my peers.  All I would have to do is get one parent of another feisty one on that jury. 

          I can do nothing but take solace in the fact that it is the last day of break.  Easter dinner is over and everyone is pleasantly stuffed full of yummy goodness. The dishes are done (thanks Goo!).  Feisty Pants has had her shower and is in her pj's.  Zombies are about to start shuffling across the tv screen.  Hopefully she will pass out before the cock crows.  If FP falls asleep at a reasonable hour, it will be a true Easter miracle.  Hope your holiday was lovely and chocolatey.

Party Time

        So Feisty Pants and I and the rest of the traveling circus are attending a benefit today.  So I am sitting here eating a veggie burrito and listening to a jam band called the Groovy Boys. I feel like I am just a few bad decisions away from college.  (I do not care what you all think, I loved my mohawk.) Feisty Pants is licking frosting off Goo's cake and bouncing to the music.  I am sitting in the corner and writing this.  Because I am just too cool that way and in no way a nerd or anything. (I am too cool. Shut up...)  

         Feisty Pants for her part was thrilled to find that a manicure is one the prizes being raffled off and stuffed the box for it after conning half the family into buying her raffle tickets.  Dinky Pants seems to think that cake and cookies magically appear in old people's hands because they keep handing them to him.  We have a second band taking the stage now (actually the third but we had to wait for Hippie Pants to finish work so we were late.) This new band's singer is a girl and that seems to have enraptured the mini rocker.  The person for whom the benefit is being thrown (a family member battling cancer) feels very loved right now, and perhaps a bit tipsy, so if that doesn't make this a big success nothing ever will no matter much money it's making. Or should, for what it's worth.

          Which has got me thinking, of all the crazy, seemingly illogical ways we humans deal with illness and tragedy and disaster, this one is not the worst. We often pull back, not knowing what to say or do and fearing we will offend.  We sometimes cut off the ill or suffering person, instinctively fearing contagion that really is never forthcoming.  But, this, when we instead circle our wagons and embrace our tribesman or, amazingly, the stranger at our door, this is all of us at our best and brightest.  When we start to think of us instead of me.  When we help instead of harm.  And best of all, when we help with love and food and music and dancing. This is why we are having this physical experience called life people.  This is the kinda thing that gets my tired tushy out of bed in the morning. This is beautiful.  I wish you all love, peace, and when necessary, a tribe that brings the burritos, jam bands and raffle tickets 

Cerebral Palsy Awareness

       March is Cerebral Palsy Awareness Month.  For those of you, dear readers, who do not know, Feisty Pants' main diagnosis is Severe Spastic Tetraplegic Cerebral Palsy due to Hypoxic Ischemic Encephalopathy due to Traumatic Brain Injury at birth.  (It gets all those caps because I tread warily around mine enemies.) Since Cerebral Palsy is such an intimate part of our lives and thus the cause is near and dear to my heart, I thought I would make this post about spreading awareness of the condition and post some helpful links.

      Cerebral Palsy is the term used for several neurological disorders that appear in infancy or childhood and cause movement disorders and muscular issues. Basically, they are disorders of movement and posture caused by damage to or abnormal development of the cerebral cortex of the brain (the motor control area).  It is nonprogressive (will not get worse) and up to now, has no cure.  (C'mon Universe!!!) Unlike what is actually often believed, only 5 to 10% is caused by birth trauma.  (That is what happened in Feisty Pants' case.)  The other causes are possible abnormal brain development, premature birth, brain injuries in the first few years of life. You can also add seizures and serious infections to the list too.

       What happens in CP, and this is a very basic overview, is that the brain cannot lay down new patterns over the basic primitive infantile movement reflexes properly. The pathways have a harder time forming, if they do at all. It leaves one with rebellious muscles and reflexes that will not obey one's command and make normal movement difficult. I'm probably understating this.  There are two kinds that I know of personally (know more? add it in the comments) spastic and athetoid.  Spastic involves the muscles contorting and contracting when they shouldn't.  FP cannot, for example, lift an arm with out her head turning, due the strength of her infantile reflex that we are all born with.      Athetoid usually involves an overflow of information travelling the nerves- seen in people whose cp leaves the movements looking jerky or random like.   

        There is, so far, no cure but treatments and therapies are developing all the time. (C'mon stem cells!!!) The best hope right now is lots and LOTS of early intervention.   Therapy. Therapy. Therapy.  (Oh and btw, insurance people who are cutting back on therapies right now, there is a special place in hell for all of you.  EVERY SINGLE ONE OF YOU.)  If you need or want to know more  start with these links.  (Know any other links? Add them in the comments. Knowledge is power, people, share the wealth.)

National Instituteof Neurological Disorders and Stroke- the NIH page for CP

United Cerebral Palsy- national organization page

Handicapped Children's Association- serves as Greater Binghamton Area's local UCP chapter

Family Resource Network- a great source for kids with disabilities

Parent to Parent of New York State- great resource for networking  (Not in NY? google your state's version)

The Birthday Checklist

              Okies, it's Feisty Pants' birthday tomorrow so let's make sure we got all our ducks in a row, shall we?

1) A close relative with an awful and contagious virus sure to keep EVERYBODY on their toes.

    Check! (actually we have two, no point in screwing around here.)

 2) Two children, ages two and under, who should be NOT contagious but preferably still really cranky by birthday dinner.

   Check! (see above)

 3) One Feisty Pants who, while not sick, is just slightly under the weather so we don't know if  it's allergies, or pms, or brewing an illness, or hell, just fed up with old farts who oh so obviously have no understanding of adolescence or the world or boys or fun or anything

       Check. Check check checkcheckcheck!!!

 4) Three dozen bizarre, free form, hippie cupcakes because mom has no muffin tins and is so unreasonable about making a Texas sheet cake for dinner for 6 because she's cheap so she had damn well better make those cupcakes!

      Check!

 5)Three dozen cupcake papers, half of which will say trick or treat, and the first person who bitches gets to wear a cupcake shaped unicorn horn.

       Check!

 6) Two containers of cream cheese frosting because that homemade crap Mom slaves over is gross and icky and she only makes it to annoy Feisty Pants with her cheap, inferior, homemade imitations.

      Check!

7) Two annoying last minute doctors appointments that are necessary but oh so inconvenient.  One needs to preferably involve big ass needles that mom does not like.

     Check! (and a giggle from Feisty Pants who thinks it's swell that someone else got poked for a change.)

8) What seems like a gazillion presents to wrap and will take Feisty Pants approximately a minute and half flat to unwrap and smile at and then get bored and want to watch tv.

     Check!

9) One thirteen year old girl who giggles and kvetches and makes us crazy but who was prophesied to not make it out of infancy, then not to be "in there", and then about a million other dire predictions that were total bullshit and so every birthday is a damn triumph and worth all the other hassles combined and multiplied a billion times over.  CHECK!

Happy Birthday, Feisty Pants!

RSV (aka WHAT?!? ACK!!!!)

              Ok, so this post was supposed to be about March being CP awareness month.  And I have that post half written, so maybe I will get around to finishing it for my next post.  BUT this post is going to be my version of written panic attack.  RSV is going around.   I saw a few cases of it mentioned on facebook, but they were physically far away (like two states away) so other than feeling bad for the kids and parents involved I was calm as could be.  HA. HAHAHA.  That virus is a nasty bitch and has reared its ugly head here at home.  Dinkypants has got it now (and is in exile) and I am halfway to freak out mode. 

               So, in order to NOT be one those melodramatic parents we all know and love, I have decided to whistle past the graveyard as it were and try to write to something sensible and help spread information instead of panic and flop sweat and germs.  Notice I said TRY.  Be kind, people.  Anywhooo....

                RSV- respiratory syncytial virus is a sometimes nasty respiratory infection whose symptoms usually mimic a cold. When Feisty Pants had it, the pulmonologist  at CHOP referred to it as the "nastiest chest cold". It is very prevalent and most people have had it before they were five. (Some doctors estimate by two years old.)  It's a virus -so no antibiotics and the only treatment is supportive care.  Think chicken soup, humidifier, tylenol, all the Mommy things you do when your kids are sick.   Most people have a miserable week or so and then it clears up. The problem comes when it causes a secondary infection OR when it hits the very small, the elderly, the disabled, or the immunocompromised.   Then it can be deadly.  For Feisty Pants, it meant a scary helicopter ride to Philadelphia, ten days on a ventilator, two IO's (that's when a doctor pops a hole in your bone because you're too sick or dehydrated for an IV) and one more holiday in a hospital.

                The symptoms to look out for are: fever (usually low grade), snotty or runny nose, dry cough, sore throat, mild headache.   In severe cases the symptoms to watch for are: fever, severe cough, wheezing, rapid or difficult breathing, the child may not want to lie down (especially on back), bluish tinge to skin or lips.   If you live in the Southern Tier (or anyplace you have heard it is going around) and see the first set of symptoms, go to the doctor.  They can test for it and rule it out.   If you live anywhere and see the second set GET TO AN ER STAT.  People at most risk for the severe form of the infection are the very young (under six months or under a year with an underlying health condition), the elderly, babies in crowded childcare settings, adults with an underlying lung disease (such as COPD), anyone who is immunocompromised.    

                The virus is a droplet contact virus that enters the body through the nose, eyes and mouth.  It can live on surfaces such as doorknobs, counters and toys for hours.  Now is the time to bathe in purell.   And wash your damn hands.  A lot.  A person with RSV is most contagious in the first few days but can spread it for a few weeks. (And THIS is why we need paid sick leave, people)    

                Most of time, RSV is mild and a minor bump in the road along life's journey, but when it gets nasty, it gets nasty very quickly.   If you have any reason to suspect you or your kid has it, do us all favor.  Get it checked. Stay home. (Seriously STAY HOME) Take care of it and help those little ones feel better.