Physics

             Sigh.... double sigh... sigh again.  I knew this week was going too well.  It's not too hot.   The nights have been cool and sleepable.  (Shut up -that is too a word.)  Our only appointment this week was canceled. No one threw up.  Nothing broke down. Nothing burst into flames that wasn't supposed to burst into flames.  We got some bike rides in.  We got a few chores done.  We even started to catch up on paperwork.  We only had to deal with one state agency and the person at said agency was pleasant, prompt and efficient.  I've only had one nagging computer issue. (This paragraph will be in a smaller font for no reason I can fathom, at least on my machine.)   All this good stuff of nothing new should have been my clue.    Of course Feisty Pants would develop some new tic that makes us all nervous.

             When you are a special needs parent, you get very, very good at the big things.  The oh my god the helicopter's coming things.  The call 911 and get the oxygen going things.   The she's been transferred to Timbuktu where's my suitcase things.   You get really good at the tiny things.  Paint in her hair?  Clap for her- it meant she actively participated in school.  Coughed ick all her shirt at the store?  Hit the dollar store for a tee and change in the car.  We can always tie dye it later if it's ugly.  Said a new word clearly?  A new word that is NOT um, err, mother superior?  Calmly explain that swear words are for saying to speech therapists.  They'll appreciate the effort it took.

                    What you are not good (at least what we are not good at) at are all the weird, in between things.   Is it a minor cold or the start of pnuemonia?  Is she crying due to allergies or is she about to have a medical crisis?  Is she hiccuping because occasionally human beings do that or because her stomach meds need to be changed?  In this case, is she getting sporadic low grade fevers because she is working on molars (happened before)? Or is she getting them due to microaspirations due to not swallowing well (happens occasionally)? Or is she reacting systemically to an allergen in her environment (yup, we do that one too)?  Is she just been physically stressed due to her last illness and is what one doctor called "temporarily temporally instable" (seriously)?   OR, since she just got off antibiotics, have we gotten into a superbug and the antibiotic didn't work and she is about to get really sick (been there too, dammit)?    We cannot tell right now.  And will not know until she either gets better or gets worse.  Sigh.

                      So here we go again.  It's time for special needs parent physics.  You'll sit around and stare at your kid and do math at five gazillion miles an hour in your head.  Do I have cab fare on me?  Is the cell phone charged?  Where's the med list? Is it up to date? Is that a cough? What's her sat rate? What's her temp? Is she cranky because she's sick or because I'm annoying her every five seconds?  Do she look pale to you?  Do her eyes seem less bright? How about now?  Now?  Is she sleepy because she doesn't feel good or simply because it's nighttime and I've bugged her alllll day?  And Feisty Pants is feisty and eleven, so she will milk it.  "Don't feel good, need a donut"  "I'm sick, put on dizzy (disney)".  I'll be lucky this weekend if I'm not the thing bursting into flames.

Papercuts

                You ever have one of those days that feel like you did something very wrong in a past life?  A thousand things go wrong and you can't seem to keep your stride?   Nothing major - no, then you would have leave to complain.  Just all the little things. And if you bitch, you sound like a whiner. Yup, it's one of those days.  My friend, Celtic Pants, refers to them as "death by a thousand paper cuts".

                 We've had to switch our weekend around.  For a great reason- a party, for goodness sakes.  But originally, I thought it was on Saturday, so when a dear friend we don't get to see often invited us to his going away barbecue I bowed out.  Only to find the original party (a baby shower) was on Sunday.  So we did not get to say goodbye to our friend and I feel really stupid.  Oh, and I thought the shower was coed.  So Goo and I tried to arrange our day so we could both be there. (We sleep in shifts- this means the time schedule is now like algebra.)  It's not coed.  So, Goo will get a real night's (day's) sleep but he doesn't know it's not coed so he may have a freak out if he wakes up and we are just gone.  And that means I am doing all the lifting and hauling with Feisty Pants- not normally a big deal here at home but can get tricky in a public place.  Baby changing tables are not meant to hold a 65 pound preteen.  Floors are dirty.  Wrestling her in and out of cars by myself is tricky when she is actively pulling a houdini on me.  Not taking her is not going to happen.  We already were evil and made her miss one event this week.  A second miss and she will definitely disown us due to our incorrigible boringness.  And it's hot.  And my head aches. And Feisty Pants has spent the morning whining because her head aches.  But don't worry, I am not gonna whine here at all. I would just put on my big girl panties and deal with it but this morning I could not find them at all.

                Ah well, c'est la guerre. I really am just whiny.  The caffeine and ibuprofen should kick in any minute now. (Really, any minute NOW, Universe, thank you.)  FP will get to see her cousins and have some fun just being one the gang. There will be good food and yummy cake and lots of relatives. And since it is family, the hosts, who are big mushballs, will make sure all the kids who show get some prize from the games, so FP will come home with some trinket clutched like a trophy to show off for the rest of night.  And Goo will get some sleep and happily forage a sandwich so I will even get of out cooking for the evening.  And all it really costs me is little bit of juggling our crazy schedule around.  Really, though, Universe, if you are going to see fit to give me a complicated kid and adhd, couldn't you have given me patience too? 

Guilt Trip

         So, today I am the worstest,most borrring mom EVER.  Just ask Feisty Pants, she will happily tell you how her father and I are abusing her with boredom today.  We suck.  We are terrible, awful, no good, miserable monsters masquerading as pathetic excuses for parents in particular, and human beings in general.  We have ruined her life forever.   We kept her home on the bestest, most awesomest field trip of the year and we shall surely rot in the fires of perdition for it. We did not let her go to the fair.

           She goes every year. Her whole class goes. Her whole school goes.  The whole world goes today.  And we made her stay home.  Why?  Because we are evil that's why.  Her class made matching tie dye t-shirts to wear today.  She was gonna get to ride a pony.  There would be cotton candy and smelly chickens.  There would be rides.  But she is missing alllll of that just because we are obviously mean.  Forget the fact that she cannot get on any of the rides.  Forget the fact that actually gets bored by noon and complains the rest of the day.  Forget the fact that the sawdust and fried foods and random animals seem to set off her asthma. If it's hot, she comes home with a headache.  Especially pay no attention to the fact that Feisty Pants has been antibiotics for 8 days now and is having what I shall euphemistically call digestive issues (because "Dear God, what is that coming out of her now?!?" seems melodramatic).  We are simply keeping her home to day to ruin her life because we are miserable and want her to be sad too.  Just ask her.  She will tell you.

           Actually, she is not quite that bad.  She has refused to get dressed today.  ("No go? No clothes!")  She did tell me to "Get outta da way! and "chhhhhh" (she cannot say shh) every time I got near the tv.  We did try to explain this morning and apologize.  When we asked if she understood why, she nodded and said, "Uh-huh, you're EBIL (evil)" but no one got kicked so I'll call it a fair trade. I really do feel bad.  It always seems to happen this way.  There is always some event she is missing out on because she gets sick at the last minute or (like in this instance) the cure has become as bad the illness itself.    If she's smart, she will try to leverage this guilt trip into a real trip like a day at the local splash pad or a shopping excursion.  Just don't tell her I said so, she is tough enough negotiator without any encouragement.

             

May I see a whine list?

         Well, it's been a bit of an eventful weekend.  At least at the start,  the microwave died in a horrible icky smelling way.  (What on earth is in those things?!? It burned out and said goodbye via a horrible rotting burning tire odor.  Honestly, I didn't know whether it was broken or possessed by demons.)  Feisty Pants' allergies finally did catch up with her and now she is on antibiotics.  Not a huge deal but she had a sinus headache and literally cried for eight hours straight.  Then in the wee hours of Friday morning, Goo went to hook up Feisty Pants for a feeding and found her g-tube had fallen out and was broken.  Which means an ER trip.  At 1 am.  Where the on call doctor did NOT really know how to replace one in real life -just kinda on paper.  I am not sure if he appreciated Goo's slightly sarcastic tone as he explained it, either.  (But the intern sure seemed to like it.) And then, we sent FP into school,  feeling like Mommy and Daddy Dearest, because the orthotocist is supposed to be getting her new knee immobilizers and he only goes to her school on Fridays.  She didn't even get them. sigh.....              
        I realize I'm basically whining here.  Nothing insurmountable or truly awful has happened.  My daughter is home and basically fine, if very whiny from the heat and her headache.   The microwave has been replaced and no one had to die of cold coffee or from being forced to cook at the stove (the horrors!).  Cheweverything Pants hasn't even demolished anything new this week.   We even managed to get some things done around here. I should call it a win.   But is seems like it's been a long hard struggle to get everything done.  And it has all been accomplished to soundtrack of a very bitchy whiny nonstop complaint as only a preteen girl can do in her best dolphin speech. (Good or bad, anything that agitates/excites a preteen girl makes them instantly revert to their former life as a really loud dolphin.)  Goo, the dear oh so foolish adult male that he is, thinks that talking logically to her will somehow help.  Really, he should know better, this is daughter number two.  He's just throwing gasoline on that fire.  If he tells her to "calm down" we will all have to beat him to death with sticks.  For his own good of course.
         Nothing to do really, but batten down the hatches and wait for the storm to pass.  The tylenol will kick in and lessen the little one's headache.  Eventually, she will whine herself to sleep.  Then, hopefully, the tylenol will lessen my headache.I cannot just throw choclate at her but noting says I can't lob some in my own direction.  A few days and this will all pass.  Probably just in time for the antibiotics to really do a number on her tummy and upset the other end of the apple cart.

'Fraid Not

        So, we have made through the paperwork blizzard.  Well, most of it anyway.  Feisty Pants is happily ensconced back in school and therapy. Well, most of that anyway. Things are humming along nicely.  So, of course, something has to come around with a monkey wrench to gum up the works. 

        In this case, it's a combination of weather and someone's fear.  This wet, humid, warm weather is terrible for Feisty Pants.  Wet and warm equals mildew in the air.  Add to that a high pollen count season. Mulitply that by a disabled kid with allergies and mildew sensitivities. All that adds up to Feisty Pants having a wheezy, sneezy, snotty summer.  To the uninitiated, FP seems like a sick kid.  But she's not.  Her sat rates (oxygen saturation rates - a measure of how well she's breathing) are fine, considering.  She has no fever. Her vision is "on".  (Kid's with a cortical visual impairment can "shut off" their vision when tired or ill or overwhelmed)  She does not have the raccoon eyes she gets when ill. In short, she is not showing any of the signs that Goo and I have come to get nervous over. But if you do not know what her normal is, she looks like a kid with a bad head cold.

          But, someone with some medical training who deals with Feisty Pants is having a panic attack.  And, kinda wants us to panic a bit too and rush to the doctor rightthisverysecond darn it.  Sigh.  I get why.  When you do ANYTHING in the medical profession, the training involves, in part, scaring the hell out of the student.   You want to impress on them the weight of import of everyday decisions and how quickly things can go wrong.  We all want them to take their job seriously because it is our health and survival they deal with.  They see my beautiful, vulnerable, very disabled daughter and instantly see how she does not fit their molds.  They instantly see all the things that have gone wrong and can easily go wrong again. She scares the hell out of them for a damn good reason and frankly, she should.

            But, she's a kid, first and foremost.  Not a delicate piece of china.  Not an elderly person whose body no longer bounces back the way it used to.  She's tough as nails and has survived things that leave us mere mortals in shock and awe in the dust. Wrapping her in cotton wool and hiding her from the world only cuts down her actually being a kid and having a childhood and a life.  Not going to happen on my watch.  She deserves what every kid deserves, a childhood and a chance.  I am not a fool, thankyouverymuch, I have and will continue to schlep her cute tushy to doctors and hospitals up and down the Mid-Atlantic seaboard for as long as it is necessary.  But I have seen too much, been inside too many ambulances during real emergencies, slept too little and held my breath far too long to care about someone else's fear.  Your fear is YOUR problem.  I've got enough of my own baggage to carry. I don't need any of yours.  Just please, don't act like I don't care because I am calm when you are not.  

         

Good heavens, it has been a busy week. Feisty Pants is back in school. For the uninitiated, she goes to school year round. Many disabled kids do. She gets a few weeks at the end of the regular year. And a few weeks at the end of summer. Feisty Pants doesn't seem to mind. We are borrrrrrring, in her opinion.
And the summer session places an emphasis on fun. They have a lot of little field trips (such as to the fair and to local parks.) They even refer you to as summer camp. And I will thank all of you to NOT tell her otherwise, thankyouverymuch, as so far, she thinks it's a hoot and "better than regular school". First person to burst that bubble on me gets hit with the biggest stick I can find. You have all been warned.
But while I am happy to see her having fun (and more importantly, back in her therapies) and looking forward to getting ANYTHING done around this zoo, I forget what that first week of school is like for moms. You know all those annoying forms you fill out every September? Physicals, allergies, emergency contacts, permission slips. Square that number. I have to add permission to treat forms, permission to give medication forms (one for EACH med),medication lists, doctors (all of them) contact info, preferred ambulance/first responder/emergency room lists. Then add doctors orders for tube feedings, suctioning, cpr, nursing, emergency medications, instructions for oxygen delivery and when said O2 is necessary. Now multiply that times two- because one set is for summer, one for the regular school year. Oh and Feisty Pants has to have a private duty nurse with her in order to attend school. Which the school does not provide. So I have to fill a complete set of the above forms (plus some extra ones too) for the private duty nurse. (Plus copies of the private duty nurses forms for the school to keep on record =even though they have their own.) And prescriptions for each individual therapy. Plus any permission forms the therapist needs. Plus written permission for each individual involved so they can talk to each other. And just when I think we're done. Feisty Pants gets some additional therapy outside of school too. So they will all need their own set of forms. And permission to talk to all their above mentioned people. And every last molecule of all this blather has to be done before the work can start. Plus there is a social worker whose job is to help guide families through this like Virgil taking Dante through all nine levels of the inferno. And she has her own damn paperwork to oversee all the paperwork.
So you will have to forgive us if we are cranky and useless this week. You will have to be tolerant if we get nothing done. If the lawn is unmowed and the dog has eaten my homework. If the laundry and mail has piled up. If I smell like white out and coffee and angst. And Goo is running away from home for lack of dinner and human company. It's blizzard season in Feisty Pants Land and I have to shovel out before cabin fever sets in for good.

Eh, Walk it Off (booboos,take three)

Okies, so this post is about home remedies for all the assorted booboos and happenings that seem to come with all your summer fun. It is, btw, NEVER meant to replace real actual medical attention. If you think you need that, please go straight to your nearest doctor's office, walk-in clinic or ER. Broken bones, sunstroke, asthma attacks, or various accidental deaths really put a damper on holiday in the sun plans. Don't muck about with them. But for the simple and minor things, maybe these remedies can lower the misery factor and let everyone get back to the fun.

1)Banged your toe, hammered your thumb, minor bumps or bruises?- Ice and ibuprofen are your new best friends. Apply an ice pack (fifteen minutes at a time, three times a day)and take some ibuprofen (not aspirin). If the swelling gets bad, by all means, see someone with real medical expertise. Bump was to someone's head? Give the doc a call to see if it needs to be checked out.

2)Bee or wasp sting? -If allergic, like Hippie Pants, get your soon to be wheezy butt straight to the ER. If not, carefully remove stinger with tweezer or credit card (they work really well at scraping out a stinger.) Apply ice and a paste made of crushed aspirin and water. Personally, I also find a popsicle cheers up little ones immensely after a bee sting. I think the cold sensation takes their mind off the sting.

3)Overdid the yardwork,or horseshoes or general play?- rest, rest, rest, ice if you pulled a muscle and any painkiller. This a great excuse for loafing. Hang out in the yard with kids, read a book together and call it quality parenting.:)

4)Poison Ivy?- relax it's not catching or spreading ONCE you wash the oils from the affected area, especially your hands. Wash with soap and water, apply calamine lotion, and take a benedryl or other otc antihistamine.

So there you go. Remember to stay hydrated and use common sense. Hope your summer is relatively stress and booboo free.