Belated Thank You's

            So, I want to make this post be about all the people I need to thank for all they have done while Feisty Pants was in the hospital.  A little belated I know, but better late than never.  In my defense, it always knocks us off our perch a bit when she is in patient.   It seems to take us forevvvvvvvvver to find our stride again.  It's like stumbling when you are trying to dance.  Other people seem to trip or miss a step or two.  I end up ass over teakettle in the orchestra.  But I digress...

           So, thank you everyone at Lourdes Hospital, your diligence and dedication are beyond compare.  We always bring our beautiful, vulnerable child to you first, and we are never disappointed.  Everyone, from the doctors and nurse to respiratory therapists and X-ray techs to phlebotomists to kitchen staff and housekeeping , everyone is professional and kind.  Not everyone deals with kids well, but even when Feisty Pants is screaming and swinging (or even dropping a f-bomb) not one of you ever bats an eye or even say a cross word.  That takes a lot of patience.  Thank you.

            And thank you, friends and family, for rides to and from the hospital.  It's hard enough to tag team parent in shifts at home.  It's nigh on impossible to walk an hour each way (we have no car) and still get anything done.  People like you rarely get the recognition they deserve,  so, THANK YOU.  It was kind and amazing and awesome.  You all kept saying it wasn't a big deal. Yes, yes it was.  You are big souls for helping.

            Hippie Pants, you didn't feel good all week and a new puppy while fun, is a heck of a lot of work.   Yet you dropped everything and shlepped you and Dinky Pants over here to clean up puddles and keep the puppy from chewing up/peeing on everything.  And you did it without bitching even though you were tired and felt like hell yourself.  Even when I was bitchy.  Thank You.

            Oh, and thank you all the various people who are a part of Feisty Pants' regular routine.  You all have to learn to keep on your toes around FP because we cancel and shift your schedules around often with little or no notice and yet you are always gracious about it.  A special thank you to those people we called two or three times and to those we forgot to call at all, because we forgot where we were on our list of phone calls and tried to just wing it.  None of you called us on it.  That was really nice of you.

             Thank you to the woman who runs the Starbucks kiosk at the hospital, too.   You are always kind and extremely sweet and friendly, no matter how cranky we are (or the bitchy person ahead of me in line is).  That takes a generous spirit to always be that sweet.  If no else noticed, we did. 

             And to anyone else I am forgetting.  Thank you.  I've probably left all sorts of people off this list.  It's not on purpose. I just run out of attention span sometimes.  How about we all just pretend the oscar music started playing and my mic cut off??

           

Things that make you go Hmmm

               So, we have noticed something odd here in FeistyPantsland.   Since Feisty Pants has been home from the hospital, the new puppy, Cheweverything Pants, and she have been inseparable.  That's not unusual.  After all, human or canine, puppies love puppies.  The puppy insists on sleeping at FP's feet.  Again, not unusual.  She is even very gentle with Feisty Pants.  STILL not unusual.  What is unusual is that FP stops snoring the minute Cheweverything Pants climbs into her bed.   And breathes quietly all night.  As long as the puppy is with her.  THAT'S unusual.  There's no reason for that that we can think of.

                   Not that we mind, heck no.   Easier, more quiet breathing is AWESOME with a capital AWE.  There is simply no logical reason we could think of.   We even mentioned it to FP's pediatrician this morning at her follow up visit.  His answer- "There is no medical reason for that at all."   He scratched his head, literally.  He did surmise that maybe the puppy's presence was relaxing for Feisty Pants.  So that's as close to an answer as we have right now.  Although as he left, he looked at the resident he had with him and said, "Sometimes medicine has no logical answers for everything." 

                    But that's part of the miracle of pets, isn't it?  That for simply giving some room in your home and some room in your heart, you get paid back about a gazillion times over.  A bowl of kibble and a few pats on the head and in return you get better health, lower blood pressure, less loneliness, lessons on empathy and happiness and living in the moment.  Forget cathedrals or temples or saints or intelligent design, if there is an eloquent argument for the existence of a deity, it lies in the quiet heart of a contented dog nestled at your feet while you sleep.

                   So whatever mojo or non magical phenomenon is going on, we're kinda thrilled. It's a small victory, really.  But anything that makes anything better for Feisty Pants is amazing and very welcome around here.  And if it's something Cheweverything Pants is doing by accident or design, well done Alfie.  (Who's the bestest puppy, ever??? )  Not frigging bad for someone nine weeks old who is still scared of heaters, large leaves, the dark and going down stairs.  If we can just lick house breaking, we are all set.

                 And thank you, Feisty Pants' aunt and uncle.  You simply wanted to get her a great birthday gift.  Everyone remembers their first puppy.  But Feisty Pants' energy and ability to do things is always connected to how well she is breathing at the moment.  You may have done so much more than you know.

Home Again, Home Again

           Huzzah.  Feisty Pants is home. She should have been home Saturday but instead was discharged Monday.   We had a doctor who didn't know FP very well covering for her pediatrician for the weekend.  New doctors are almost always scared silly by Feisty Pants.  Some take one look a her and want to immediately transfer her to a larger hospital.  Some, just want her to stay put where they can watch her sat rates and worry.  Which is why I want make this post about something people don't always tell you when you are first learning the ropes of raising a special needs child.

          So first things first- look in the mirror and repeat after me.  "I AM THE (insert title- mommy, daddy, guardian, whatever) AND I AM IN CHARGE."  Do that a lot.   Do it until you do it in your sleep. You are going to need to remind people of it.   A lot.   When dealing with schools, medical profession, insurance people, etc, you will have to gently point this out. Sometimes by shouting.  It's not that anyone is trying to ignore you.  But you will be dealing institutions and bureaucracy.  The problem with that is people who work within such frameworks get used to thinking along certain lines.  They are not paid to think outside the box, as it were.

             Next, find a central person within each framework that you trust and with whom you have good communication with.  In the case of dealing with the medical profession, get a good primary care doc and  a few good specialists.   If for any reason the fit is not right for you, get a new one.   We've gone through lots a specialists and hospitals with Feisty Pants. (Eight hospitals, I think.)  Some doctors were terrible. Some were good, but not a good fit personality wise.  These are working partners for you.  Don't settle if you are in any way not comfortable. Don't worry about replacing anyone. It's not personal- it's work.  Raising your kids is one of the jobs you do every day.    And with a special needs child, familiarity is important.  Especially in more complicated cases.  That was our problem this weekend.  The doctor, who was a good doctor and with whom we probably develop a good working relationship with, was new to Feisty Pants's care.  So, she didn't know her and she didn't know us.  We could have been terrible parents or simply really stupid ones.  FP is complicated.  So to err on the side of caution, the doctor kept her a little while longer.

               But nevermind.  What matters is she's home.  So, she is home and back to school.  Happily bossing us all around and creating havoc and mayhem with the new cohort.  And the new cohort is happily in love with Feisty Pants and only wants to be near her (until feeding time.)  I smell a conspiracy, but what the heck.  How much chaos can a combined weight of 75 lbs of adorable cause in the long run? 

Tips for hospital visits

              Well, as I type this, Feisty Pants is still in the joint.  (She is sooo sure it's a prison and we are just not admitting it.)  She is, however, very thankfully on the mend.  So since I do not have to stop every five minutes to suction her, I may actually get this written and posted.   I've decided to try to make this one about pointers about visiting a sick kid in the hospital.

               So.... First things first.  DON'T COME VISIT IF YOU'RE SICK.  We all like to see ourselves as tough and grown up, so we muddle through our days even when we are under the weather.  We go to work and do our daily errands as if spreading our germs was ok.  Working hard is a virtue.  Working sick is frankly, selfish.  I've had people show up to see FP with a cold. Really, people?!?  She is an immunocompromised kid in a hospital.  Why don't you just come to my house and lick the silverware?  One more well meaning idiot shows up sneezing and wheezing in a hospital room with FP and I am going to need bail money. I don't believe you when you say it's just allergies.  Until  I see a note from your doctor, it's the plague and you should be under quarantine. What is a cold to you was a helicopter ride to Philadelphia and a ten day stay on a ventilator for Feisty Pants.  What seems like a mild flu to you can be a death sentence to the disabled or elderly.  If you really must see FP's radiant countenance, we can skype.

              Next, before you bring things, find out if they're ok.  Cookies and candies and goodies are a lovely thoughtful gift, unless you can't have them.  And if you are a little kid, it may make you feel worse to not be allowed your favorite cookies because you're npo right now. (NPO is the abbreviation for some fancy-shmancy latin meaning nothing by mouth.) And some noisy toys are annoying to other patients.  And some kids can't have the flowers due to allergies or lung issues.  And stuffed animals are dust collectors that are not good for kids with lung issues. (By the way, skip wearing perfume when you come, for the exact same reasons.)  Toy and books and bubbles and arts and crafts stuff are almost always safe and awesome.  A small cheap handheld video game (the kind you find for about 5 to 10 bucks) are a great toy.  They keep kids occupied while stuck in bed, and usually don't get too loud.

              Also, when you do come, try not to overstay.  Kids seem to have tons of energy.  But healing takes tons of energy.  A very sweet person once brought Feisty Pants a paint set.  They spent a long time helping find a position to paint. Set up all the paints and paper and water.  Helped her hold the brush and get all set.  Only to have FP burst in heart breaking sobs because it was simply too exhausting to her to even try to sit up straight at that point.  Which almost made the grown up cry too.  So let's just give ourselves a break, shall we?  You don't have to entertain her.  Just hug her and let her complain about the horrid IV she is stuck with.  She can do that for hours on end.

                So, there's my advice.  If the tone is a little bitchy, you'll have to forgive me.  I've been Feisty Pants' cell mate all week and she's a tad cranky, to say the least.  I actually hope this post helps next time you have a young friend in the hospital.  Oh, and one last thing, no matter what Feisty Pants tells you, we are really her actual parents and you don't need to help her escape her captivity.

sigh...

                  This post was meant to be about Feisty Pants'  birthday present.  Her new puppy arrived yesterday. (Yayyy!)  A literally bouncing baby girl named Stormegeddon, Dark Lord of All or Alfie for short.  If that last sentence didn't make sense to you, it's because you are not nerdy enough.  Feisty Pants is a second generation whovian, so she approves.  She was thrilled -for about three hours.  That's when her sat rate (oxygen saturation rate) took a dive and we shlepped her off to the ER.  What started as a simple cold has turned into bronchitis and possibly pneumonia.  And admission into the hospital.  And an IV. And Feisty Pants saying the f-bomb at a nurse several times.  She didn't slug anyone though, so that is progress.

                    So, as I sit here typing, FP is finally sleeping.  And seems to breathing pretty comfortably for a cranky kid with lung issues and probably a virus/secondary infection.  I'm just sitting here trying to catch up on e-mail and type this post.  Thank heavens for free wi-fi in hospitals.  This hospital also gives the parents of minors who are in-patients meals so you don't go scrounging about. These two things may not seem like much, but, trust me, it's a hallmark of a truly civilized society.  Tedium and hunger make you edgy and that's not fun for anybody.  Not the cranky parent or anyone who has to deal with them.  As a bonus, you can easily google any medication, procedure, or medical term that you are unfamiliar with.

                    So this hospital stay so far is not the worst news with Feisty Pants.  She will not likely be transferred -read that as not likely to go into respiratory arrest so no sending her somewhere  far and wide that has a pediatric ventilator.  Hippie Pants, who is under the weather herself, has gone above and beyond the call of family duty to puppy sit during the day so Goo can sleep and at least keep the new member from chewing or pooping on EVERYTHING while we are here on enforced down time.  I guess we will just have to consider this an in-between time. Slow down and hold her until she heals.  Washing all the stuff the puppy has peed on will just have to wait til we get home.

Sensiblility

             Feisty Pants has been working REALLY hard at being a better student, so among other things she has been rewarded with a hair appointment.  Unlike her sister and I, who have to be talked into a haircut and/or sedated and bound, FP loves getting her hair done.  She wanted a pixie cut , which she got and looks cute, except for one thing.  One thing which brings up a really big pet peeve of mine.  It's boring.  Seriously.  The haircut she originally picked was edgy- her father and I  talked about it before agreeing.  Not because it was edgy, but I was concerned she wouldn't like it afterwards.  But youth should be a time of daring and excitement and rebellion and mistakes and making adults roll their eyes.   So we said the heck with it, go for it.  If it's a mistake, it'll grow back in. (She gets this done at school, which has a cosmetology class.)  But somehow it got lost in translation and her haircut, while cute, is not the edgy one she wanted.  In fact, it would be perfectly acceptable on a 50 year old woman in sensible shoes. . It's not that the haircut is actually bad. It's not. It's cute. But it wasn't the one she picked.  It's less extreme than what she asked for.  It's a limit she didn't pick and I don't like seeing one imposed on her.

                     And now we come to my pet peeve.  Why oh why do we impose awful limits on the disabled? It's bad enough what we do to typical  girls.  Their toys are all frigging pink.  They are expected to be 20 pounds underweight and their dolls are all either infants or hypersexualized  anorexic teenagers (Can we say Madonna/whore syndrome, boys and girls?)  We bitch at strong girls by calling them "bossy" and lionize trophy wives as if that were a honorable profession.  We are sold plastic surgery as "empowerment" as if paying for the privilege of a limit on what we should look like is power.  And all of that is before we add disability to the mix.  

                      With the disabled, the problem is that everything is all so effing sensible.  Their shoes are sensible.  Their clothes are sensible.  Their equipment comes in sensible colors.  Where are the orthopedic versions of doc martin boots?  Where are the easily donned leather jackets and velcro closed studded collars?  Where are the Hello Kitty wheelchairs and Vampire Hunter D knee braces?  Where are the glittery, rhinestone studded scoli jackets?  It's like we all expect the disabled to fade into the background where we won't have to confront our fears and nervousness about them as if it's their problem instead of our hang up.   Why can't disabled children have equipment that looks like their parent's worst nightmare like any other child?  Where are the tie dyed orthotics, scooby doo eye patches, death metal apps for acc devices?  Children should be seen and heard and, when it comes right down to it, rebellious and annoying and loud. Even disabled children, ESPECIALLY disabled children. The disabled are not meant to be treated like hotel bathrooms.  They should never have to be sanitized for our emotional safety.  They will have plenty of time to enjoy boring later, when it actually seems so, well, sensible.

Muckuary

                   Sigh... So now that the snow is melting it's becoming a wonderful time of year.  As my friend Celtic Pants puts it, it's now Muckuary.   You know, that fun time of year between winter's icy beauty and spring's  Vivaldiesque lush awakening.  Everything is gray and muddy and best of all, coated in mildew.  I actually like the gray and the rain.  (I prefer the term unique to weird, thank you.) But the mildew is not a friend to Feisty Pants. She wheezes and sneezes and we end up sitting around watching and waiting for her to get sick.

                        In fact, if you are the parent of a special needs child, that is something that will forever feel like a huge gulf between you and the rest of the parents in the world.  Hyper-vigilence.  Once you been through a few crises with your feisty one, whether medical or emotional or whatever differentiates your kid, you will always be on the look out for it.  Its never quite as bad or as big a gulf between us and them as it feels like.  But, boy does it sure feel like it.  I've heard it its same with social workers too.  No wonder they have so much burn out.  As a parent, I at least have the right to ignore somebody else's rules. I am the mommy after all. 

                      And, so because it is Muckuary, directly on cue, Feisty Pants came home from school, wheezing and sneezing and coughing all over the place.  She's not sick, just snotty and uncomfortable.   But we have spent so many springs in the hospital that her father and I go into worry overdrive. We'll jump at every cough (she does not swallow properly so she coughs a lot), instantly alert at every snneeze, wake for every noise that could mean trouble or wheezing.  It's the same for other feisty kids' parents too.  Their cues maybe different (Is that a stutter or a seizure?  Is that a frown or a meltdown about to start?) but the concern is the same.The ever present worry monster has moved in with you and is here to stay.  You really have to learn to adapt and cut him down to size.  Don't feed it too much and eventually you will see it as less significant.  Don't pay too much attention to it and eventually everyone else will lighten up too. Eventually, Muckuary (or the stressor or the whatever illness is going around) will pass and the sun will return.  You will finally figure out what is a big bad crisis and what's just a minor pain in the tush.  Just breathe and reboot and don't beat yourself up too badly for a few overzealous moments.  Your Muckuary will not last forever.

Feeling Artsy-fartsy

          So, we have another snow "event" heading our way.  I am not calling it a storm until it really is one.  Feisty Pants is convinced we are going to have another snow day.  Partially,  because she recently watched the movie Snow Day recently and now she wants one. Partially, because like any other kid, things are always much more exciting in the abstract than the reality.  Don't get me wrong, I LOVE the snow.  I could shack up with Santa, but a snow day means a bored Feisty Pants.  So I am  going try to be smart and organized (for once) and post a few ideas on how to not your kill your feisty one with boredom BEFORE the snow hits, or misses, as it were.  This time I think we'll go artsy fartsy instead of sciencey.  So three arts and crafts ideas for whiling away a snowy day.

               

1) Homemade air dry clay:

     1 part white flour

     1 part cornstarch

     1 part white glue (like Elmer's glue)

     Food coloring, if desired and rub well.  This will

     Baby oil

 

    Mix all ingredients in a bowl (except the baby oil) until the clay is formed.   It will be really STICKY at first but stick with it (pun intended).  Add food coloring until you like the results (optional).  Apply baby oil to the hands and rub well.  This keep the clay off your hands and help to soften it.   This dough would be great for hand imprint ornaments, too.

 

2) Homemade Face Paint:

     Lotion (any kind)

     Food coloring (or washable watercolors)

     Cornstarch

 

    Put desired amount of lotion in small containers (one for each color)  Add food coloring (or watercolor) until you get the color you want.  Slowly add cornstarch until you get the consistancy you want. You  can use brushes or q-tips for applying this.

 

  3)Homemade Lava Lamp:

      1 tall thin empty plastic bottle (with lid) like a thin water bottle.

      cheap vegetable oil

      food coloring

      alka selzter tablets

 

     Fill bottle 3/4 of the way with vegetable oil.   Add water until almost full (about an inch from the top.)Add 10 drops food coloring. Let settle to the bottom.  Break tablets into four pieces and add one at a time to bottle.  Sit back and watch kids be impressed.

 

So, there ya go.  Hope it keeps the evil spirits of boring away from your door.

Happy Birthday Feisty Pants!

                   Feisty Pants is celebrating her birthday at school today.  Her actual birthday is tomorrow but they wouldn't open the school and make all the kids go just for her and besides then she would miss Scooby Doo. ( 'Cause awesome retro cartoons are her thing right now.)   So she will have to do it today.  So yesterday afternoon we made three dozen cupcakes.  She chose funfetti because it says Happy Birthday right on the box- I did not even realize happy birthday was a flavor.  It is, reminds me of vanilla , though.   She chose yellow frosting.  (Yellow tastes better this week.)  Half will go to school.  Someone made off with my muffin tins years ago and I am too cheap to replace them.  So half of our obnoxiously fantastic free form cupcakes will go to school.  The half that's least obnoxious looking. And her nurse and teachers and therapists are awesome so they will make a big fuss over her.  That's what she loves most anyway.

                   And while she is off playing cupcake fairy/ belle of the ball at school, Goo and I will go to the grocery store to get supplies for dinner.   She has requested -and I am NOT kidding here- "fritteroni".   Go ahead, I'll wait while you try to suss that one out.  Took her father and I all night last night.    Turns out she wants apple fitters and pasta (macaronis, actually she means rotini but it's all macaronis to her because that's more fun to say).  We can blame my folks for the fritter obsession she has developed.  (That's the aforementioned "emergency doughnut.")  When my father is here, he always goes out and gets doughnuts for breakfast for everyone.  (Coffee and sweet rolls is the Pennsyvanis Dutch breakfast of champions.)  She has not told us what sauce she wants on the pasta but we will get the makings of several and let her pick.  Then, we will wrap presents and finalize dinner plans more than likely answer phones allllll night as relatives start calling to sing at her.  Her big present (the live barking, drooling one.) will not be until next week, and while she knows a present is late, we didn't tell her what it is.  So no finking, guys.   Her big party weekend with all the relatives will be later on.   She actually does not seem to mind.  She gets more parties and more fussing over her that way.  Feisty Pants is all sorts of things, but a fool is not one of them.  She knows a good deal when she sees it.  Two parties is more fun than one.

                   And finally, when the day ends and she is asleep, her father will probably catch our breath and watch her sleep for a few minutes.   We will probably ponder the journey thus far.  People call us the time and say, "Wow, she's that old?!? Where did the time go?".  People who have NOT worked 18 hour days or held her hands while she got stabbed and poked and prodded.  Or spent endless hours sitting beside a sedated kid on a ventilator in far flung PICUS. People who haven't spent eons in waiting rooms and arguing with insurance workers.   So, you will all have to forgive me if what I feel, what her father and I both feel, is not wistful and pensive but defiant and triumphant.   This is another side of being a parent of a special needs child you don't hear about often.  Getting my beautiful, vulnerable daughter to this point of fun, quirky feistiness was a hell of a lotta work.  Endless sleepless nights and often crazy decisions that you second guess for a long time.  Endless amounts of professionals from therapists and teachers and nurses and dcctors and respiratory therapists and paramedics who work really frigging hard alongside you with one astounding goal- to make your child's life better. Endless crazy nights that seem to never end as you rush to other states and other hospitals hoping she is not scared and in pain without someone who cares beside her until you can get there.  Endless moments when you hold your breath too scared to pray or breathe until she breathes just one more effing time.  So tonight as she drifts off to sleep, her father and will stop and watch her breathing for a moment in the quiet darkness.  And we will be silent, because what we will really be doing, on the inside,  is beating our chests and howling defiance at the universe, because dammit, we made it this far. 

                            Happy Birthday Feisty Pants.  We love you.

 

A Salute to Boring

                      Saturday is Feisty Pants'  birthday.  She'll turn eleven this year.  We'll have a small dinner with cupcakes.  (Cupcakes are the official food of celebrations according to Feisty Pants.)  The party will come later on when the grandparents come up from out of town.  We will celebrate both girls birthdays with a pizza and ice cream fueled family gabfest then.  We never were ones for those ginormous parties with clowns or ponies or anything.  First of all, all that crap is expensive and silly (and clowns are SCARY to children.  Whoever came up the cockamamie idea that kids like clowns in the first place???  That was some old fart who thought some kid would think it was cool.)  Secondly, it always seems to me that those elaborate parties are about the parents' egos and not the kids having a good time.  Kids will have a grand old time with some balloons and pizza.  We've never had a kids only party for FP.  When she was little, it was too difficult to arrange anything in advance. We simply never knew when she would be in a hospital.  I dreaded the thought having some other kid's parents change their crazy schedule around, only to call at the last minute and go "nevermind".  We did that enough with everybody else- therapists and doctors and our grown up friends.

                      Which is basically why we have come to like being boring.   Exciting is helicopters and CPR and paramedics and ambulances and policemen.  NO thank you.   I am truly grateful for every single contraption and procedure and awesome human being who played a part in rescuing and saving my youngest child over and over again.  I am grateful in depths that simply cannot be expressed in words or actions.  You all literally saved my baby and , in doing so, my very heart and soul. Repeatedly.  But if I never have an exciting moment again, I am okay with that. If you never have to come to my house and do it again. I am really ok with that.  My idea of a good time is sitting around at the end of a boring everday kind of day arguing over what to watch on netflix.  I crave those quiet in between moments where the most pressing work is finished and the next round hasn't started yet. Those moments when the daily chores are done, the kid is in her pjs and (in a perfect world) the animals are cuddled up to us and snoozing. That's heaven to a special needs kid's parent.

                       And, to the tell the truth, Feisty Pants, likes knowing things have a regular routine.  All kids do to some extent.  But if it was hard for us to never know when we would be calling the ambulance or packing to go to some out of town hospital, I cannot even really imagine what it must feel like to be her in those instances.  You feel like hell and can barely breathe- scary enough for someone who is just a little girl, but now there are sirens and strangers poking you with needles and sticking instruments in your face.  Worse still, they often take you away from your parents and don't understand you when you talk or cry.  Even more horrible, they wear masks and you can't even see their faces so maybe they are not even people after all.  (Ya know, I just think I figured out why she is obsessed with aliens.  A scary hospital stay must feel just like an abduction experience.)  So, I don't think she minds so much just sitting at home having people she knows and trusts come make a giant fuss over her.  Especially when they clap and sing and bring her cupcakes.  Although, now that she is older, she is much more interested in "stuff out ou Ummy".  (Stuff without YOU, Mom.)  So I should wait and see if she asks for a kid's only party.  If and when she does. she'll probably get it.  But no clowns.  Those creatures have got something WRONG with them

Question of the Day

                Today's post was going to be about Feisty Pant's triumph at school.  She has gone a month without a temper tantrum (She's an old pro at those -a lot of disabled kids spend much of their time simply frustrated and therefore are never quite far from a meltdown.)  She was named student of the month at her school and we all did the happy dance for her- literally.   Which got me thinking.   Are we weird and quirky because we have a special needs kid, or is it just more apparent because of Feisty Pants?  I like to think it's just more apparent, but I am probably fooling myself.  We'd be this obviously wacky and strange no matter what our situations was. ( I am so nerdy I have my own dice set.)  And that lead to things I wonder about now because I have a feisty one.  So this post is apparently going to be about questions I would love to have the answers to now that I see things a bit differently. Questions that I don't think I would have ever pondered before.  Like the following:

                  Why are hospital vending machines full of crap food?  It's a hospital for goodness sakes. I don't know how many nights we have spent looking for any source of real food in some far flung medical center at three am.  If your kid has been admitted and given a room on a regular floor, you can usually scrounge up a cup of coffee and some crackers and peanut butter.  But if you are all still sitting in an ER at 3 am- you will be lucky if the vending machine candy bars have peanuts in them.  A few ER's keep juice and crackers handy, but not enough of them.  It's like they are trying to drum up more business with all the HFCS.  Would it kill you guys to offer some fruit and veggies at 3 am?

                  And on the subject of hospitals, why isn't there a salvo or some other thrift shop in the hospital (or right next door)?  I have been thrown up, coughed or pooped on in eight different hospitals. A few have (or more to the point offer to patient's families) access to a washer and dryer but what do you wear while waiting?  If you are lucky you can scavenge a pair of scrubs, maybe.  Only one hospital (Strong Memorial in Rochester) had a small thrift shop.  It was GENIUS.  Just a small room with some clothes.   But it raised money for their cancer programs and made a big difference until my family could bring me clothes after Feisty Pants had been transferred in the middle of the night and all I had was what I had been wearing.

                  Oh, and what do you do with used medical goods?  I am not talking about wheelchairs or equipment.  There are a lot of ways to donate them.  (Got some old crutches, walkers, canes, etc?  Call your local Independence Center or Council on Aging. They will be glad to take them off your hands.)  But my house is crammed full of scoliosis jackets, dynamic ankle foot orthoses (ankle braces), hand and knee splints that Feisty Pants has grown out of.   I cannot recycle them ( medical goods are a no no) I don't want to put them into a landfill.  I have yet to figure out how to repurpose them.  So they sit around here collecting dust and mocking my lack of ingenuity.

                   And one last thing, I ponder a LOT...  What the heck is wrong with grown ups?  Seriously, kids aren't normally fazed by FP.  And if they are a little daunted by her, they simply ask questions.  Great questions, actually.  "Why are you in that wheelchair?"   "Why do you sound funny?"  "Does that hurt?"  They usually follow those up with even better questions.  "So, how fast can that go?"  "Can I ride, too?" (The answer to that is usually "get on!") Adults are either so afraid of saying the wrong thing that they say EXACTLY the wrong thing.( "So, um, er, um, what's wrong with her?" ) or they assume she's incapable of coherant thought and talk to her like she's two months old. ("How you doing, sweetie, baby, honey bun?" in a cooing sing song voice.)  I know you all mean well, but it's like you all immediately dither when you don't know what to say.  What gives?

                   Any Zen masters out there have these kind of answers?   I would love to hear them if you do.  Hit me up in the comment section.

Sliding into home plate...

          Whew... we have a had a seriously busy week. Some weeks feel like you've had to steal every base. So I am behind on my blog posts.  Sorry about that.  (I am sure you were just waiting breathlessly for this.  It must be the highlight of everyone's existence.  Why are you rolling your eyes???)   We had appointments every day this week.  From the typical (if it's Monday, it must be ot/massage) to the awful (Her dentist is lovely man, but you cannot really tell that by Feisty Pants' screaming during the whole appointment.) to the "this only happens to a special needs parent" (one teacher and four therapists sitting in my living room discussing astronaut training.)  But we made it through with only minor swearing and without having to cancel any of them.  (I want a medal for that trick.) 

                 But FINALLY it's Saturday, and no appointments.  (HA! Take that Busyness!)  So I'm gonna try to catch up on my housework and yoga and emails and this blog (dammit) -if only because I need the mental discipline. And if I get it, there is a lindor truffle bar with my (and only my) name on it.  And if I don't, after I finish swearing, I'll try to reboot and remember that life, like yoga, is a practice of intention not perfection.  And if I really get my fanny in gear and finish early, there is this thing I have heard of called umm what is it again?  Oh yeah, SLEEP.  Apparently what happens is, you lie down and time passes.  Then you get up and don't feel like smacking random people for existing.  I am not sure if it's real but I wanna check it out.  Feisty Pants says it's awesome.

                  I am hopeful, a few things are in my favor.  Goo got to bed on time so he's up now (by 6pm) so he can lend a hand so I can write and do laundry and fold clothes. (He is NOT allowed near laundry.  He shrinks things.)  There is a marathon of monster shows on, yay Jersey Devil and batsquatches and black eyed kids for thrilling FP.   And, she is not sick, so we are not stopping everything every five minutes to suction her.  Cross your fingers for me.

            I do realize too, how lucky I am. We only have Feisty Pants to be complicated. (I cannot even comprehend how parents of more than one feisty one do it.  They must have the strategic skills of Alexander the Great and the finesse of ballet dancers.)  I have add and caffeine- the Universe had better grade me on a curve.  But if you do end up with a special needs kid, it will get crazy a lot.  In ways that don't always show to the outside world.  And, you learn to adjust and roll with punches. You learn to reboot, wash whatever it is out of your hair, grab another cup of coffee and get back to work.