Tuesday, May 17, 2016


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

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

Wednesday, May 11, 2016

Into the Sunset

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

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

Sunday, May 1, 2016

An Apology in Advance

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


Tuesday, April 26, 2016

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.

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.
           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.

Sunday, April 17, 2016

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?


Sunday, April 3, 2016

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.

Sunday, March 27, 2016

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.