Magic Corn

         So my kids are nuts for Christmas.  I know all kids who celebrate Christmas go through that stage.  The difference is mine never grow out of it.  I blame my side of the family.  I would blame genetics, but I am an adoptee so no luck in finding a scapegoat there. hurrumph  It has to be nurture.  My mom's family is Pennsylvania Dutch. A big PD family.  (not kidding- I have over 40 first cousins- not second, not third, none of that removed stuff)  You've all seen  My  Big Fat Greek Wedding?  We have My Big Fat German Christmas.  My mother put a second oven in her house just for holiday dinners.   And now Feisty Pants has caught the fever.  So we have to get the lights lit BEFORE Dark.  We have to make cookies at least twice a week.  (C'mon Ummy, it's kismass)  And, she has informed us, we have to find "magic corn" for the reindeer, otherwise how will they fly to the next kid's house, hmmm???  And none of our carrots nonsense, thankyouverymuch, she saw Santa Claus is Coming to Town so she isn't fooled one bit.

          I must admit it's kinda fun, watching kids discover anything new and amazing to them.  And, it's even nice in Hippie Pants' case, to see them not become jaded and cynical about holidays.   It's cute watching FP get all excited about her new ugly sweater for her class' sweater parade and how she will get to wear pajamas to school her last day for the school-wide pajama party.   (Whoever thought that party up for Christmas is a genius!  The kids wear pjs, eat popcorn and watch movies for the party.  They are all excited and no parent has to lose their mind over making cookies.)  She is especially excited because she was afraid she was going to miss Christmas because she was in the hospital last week.  (She told us this after we came home.)

           So, I guess I have to admit I am looking forward to it too.  The kids are happy and chatty.  The house smells like it should (cookies and bread instead of our usual failed chemistry experiments)  It is cold and snowy ( That always cheers me right the hell up)I am sure by the end of the week, I'll be crazed with trying to finish baking, and pack to go to my folks, finally be done with gifts, not to mention wrapping and cards and relatives and phone calls.  And usually something really nutty that makes for an amazing story years later when its finally funny.  (Not kidding, I have dozens. )  But right now, it's quiet.  And there is snow on the ground.  And the big kid has left to go home after watching Christmas specials while cuddling with her sister.  And the little one is asleep.  And Christmas music is playing.  And the house smells like the bread Goo is baking.  And it's ten degrees outside, so no mildew to make Feisty wheeze. It's a grand in between moment.   And I am going to make some tea and savor it. And try to figure out some magic corn.  Before my mother blows up something in her kitchen for the second time this week.  (I wasn't kidding about those wacky stories.)  I wish you a moment of calm in the chaos.  Peace.

Falling of the wagon

        So, we have fallen off the wagon, so to speak.  Feisty Pants has been in the hospital all week. Sigh... It always sucks.  I shouldn't bitch too much.  She wasn't transferred out of town.   She never stopped breathing. There were only two IV placements. It was simple in and out type of deal. A few days on an IV antibiotic and home to finish recuperating.  I am grateful.  We have some scary, scary episodes. This was NOT one of them.

        But, sigh, it never gets easier.   It never gets easier holding her hands while she cries as they stick with her needles.  It is never fun, hearing her beg to go home.  I hate not being able to pick her up or have her sit on my lap because there are too many tubes and wires tying my child to the hospital bed.  I can never get the sound of my youngest and more vulnerable child saying "please stop, please stop" to some medical procedure she hates out of my head or soul.  And, I don't even have the luxury of resenting those who do this to her.  They are, for the most part, dedicated professionals who take great pride and great care in giving top notch medical care to children.  And, trust me, nobody, not even the jackasses, goes into pediatrics for the money or their ego.  When we hit the ER this week, we had nurses, therapists and phlebotomists from all over the hospital swinging by to see "our girl"  and make sure she was getting good care. 

         And now we are home.  In time for my in-laws  early Christmas celebration this weekend.  In time to try to finish our gift making binge.  In time to try to run a marathon of finishing for the holiday.  And to let Fiesty Pants' bruises from the needles heal.  And to let her lungs finish healing (it was pneumonia, probably viral to start -viruses just kick her butt)  And mostly, in her mind, to give her one good day of snuggling on her father's lap watching whatever the hell she wants to because she has damn well earned the right to monopolize the tv tonight.  (It's apparently going to be a Cops, Bigfoot, Dr. Who kinda night.)

         So, in case you ever wonder why we spoil our feisty ones.  In case you ever wonder why we seem to be raising little Bond villains.  In case you wonder why we let them get away with some crap we would not tolerate from anybody else for even one moment.  It is because we watch our very vulnerable children go through a million little hellish moments of one kind or another.  Often, one right after the other.  And when we finally get to leave, they look their torturers right in the eye and say "thank you" for their help.  It all just seems so damn unfair, you want something to go their way for a change.   

For that moment when they tell you...

      So, the universe has decided that you have the parental skills (or least the potential) for raising a disabled child and has handed one to you.  After the first reaction of "Wait, what?!? Who, me?!?", what do you actually do?  Some advice if you don't mind.

               First, take a really deep breath.  Get used to feeling of having the rug pulled out from under you.  It's gonna happen a lot- in both bad and good ways.  You will learn to ride it out. You will find a new normal.  Try yoga or meditation, if you need to.  (Although any exercise will help.)

               Next, go ahead- mourn the death of your expectations.  We all have them for our kids.  Disabled or not.  The child you thought you had either did not exist or no longer does.  Acknowledge it, and then let it go.   What you have instead, is something different and much more precious.  If you allow yourself time to grieve for a little while, you will be able to see the beautiful unique child you actually have.  I have two daughters, the youngest one is disabled.  I am actually much more relaxed with the disabled child and I suspect that makes me a better parent to her. Seriously, Hippie Pants is a genius but artsy and flighty.  I wish I had allowed her to be herself instead of ALWAYS stressing about her grades which were never a true reflection of who she is. (Sorry Hippie Pants, but you were my learning curve.  Think of it as the good karma you earned for your little sister, if it helps.)

               Now, go get some different expectations, not the ones you thought you needed like  crawling at x number of months, piano lessons at x years.  GET BIGGER, BADDER, BETTER ONES. SERIOUSLY.  Think happy, healthy, moral adult.   You are not raising a disabled child.  You are raising an independent bad ass adult.   Disabled child is simply the raw material you were handed to do this with.  Make bad ass grownup your mantra.  You're gonna need it when dealing the well meaning morons who you will be trying not to smack all the time.

                  Next, understand that people come in three catergories when dealing with the disabled.  This is most obvious when dealing with the medical profession or education.   They are the following:

1) "OMG that child is disabled. Freak out now. This is not a drill"  -  These are well meaning idiots.  They are the doctors who want to immediately jump to the most dire procedure.  The social worker who wants to help you find a boarding school when your kid is a few months old.  The other kid's parent who doesn't allow their child to ask questions. Sometimes its the drama queen parent of another feisty child who wants you to participate in their anxiety.  Learn to have patience, but call them on it.  They need an education in not being timid.  Most, of all don't let them freak you out.  Their fear can be contagious.

2) "What do you expect?!?  She is disabled after all." - There is a special place in hell for these complacent bastards.  These are doctors who say stupid things like "I'm sure you are okay with anything that stunts her growth"  (No, Dr Mengele, I am not okay with ANYTHING that could limit my child's potential.)  Or, the supposed learned educator who decides because she cannot reach your child, there is nothing to reach for. (Threatened to go to court over that one.)   Always nail these jerks straight to the nearest wall.  Better yet, take their proverbial heads home and mount them on pikes in your front yard as a warning to next jerk who is willing to do a half assed job with, for, or around your kid.Worst of all, sometimes its YOU.  ("I'm sure you tried your best, honey" you say when you kinda know they didn't but are too tired to argue.)  NEVER drop your guard on this one.  Complacency is not your friend.  Disabled people have to over come barriers we don't even normally see.  They are gonna need  strength for that fight not crippling sympathy.  You do NO child, special needs or typical, any favors by not teaching them to shoot for the stars.  So what if they fail?  They'll learn to pick themselves up, dust themselves off, and try again.  It's called being a person. 

3) "Umm, hi, I don't know what to do here..." - This is everybody else not in the two above catergories.  They are actually kind of ok.  Really.  I am more surprised by the number of people who turn out be decent human beings when given the chance, then the number who don't.  We are, at our most basic level, simply banding primates.  And that's actually a pretty cool thing.  People who simply roll up their sleeves and try to help out.  And be cool and inclusive.  The ones who get we are all trying to muddle through together.  They may say silly things or step on your toes occasionally, but for the most part they are helpful and kind.  Be patient and kind back.   You owe your kid a chance to get to know and be part of this crazy world.  And these are the ones who will let them in.

                  Oh, and a few last words on this.   We are all freaks in some way.  Not one of us is perfect.  Your child's not perfect is no better or worse in the long run than anyone else's not perfect.  Learn to dance to your own damn rhythm and let them dance to theirs.  Also, get one healthy vice; (notice I said HEALTHY) coffee, crossword puzzles, knitting, yoga, blogging, competitive ironing, underwater basket weaving, whatever.   Something that is all yours.  Something you can do anywhere you are.  It will let you not get swallowed up when things get crazy.  Good luck and remember to have fun with the weirdness. 

                                          

Gifted

          So this year, we are trying to have a different sort of Christmas.  And so far, to my surprise, I think we are managing it.  Money's tight.  (If you have a disabled kid and aren't actually a robber baron, money is always tight.)  And not just for us. It seems tight everywhere this year.  And I for one, am sick to death of rich greedy people trying to equate spending our money with patriotism or caring.   Especially since it only seems to be about those things when flowing into their coffers. Jacob Marley, where are you when we need you?  Anywhoo, all those stores being open and making their employees miss Thanksgiving is kinda the impetus I needed to opt OUT of the annual feeding frenzy/hunger games of shopping.  So me and Bob Cratchit and Tiny Tim  (HP and FP) are making as many of the gifts as we can this year.

        We usually try to make some of them.  Usually with results straight out of some wacky sit-com.    There were the fudge pops that were supposed to melt into your coffee but melted at room temperature.  Candles that smelled like rotting crayons.  (Is zombie a yuletide scent or is it more autumnal?)  Body oils that smelled like flowers and feet.  (My friend Celtic Pants took to calling me the mad alchemist that year.)  The six dozen peppermint and vanilla candy cane shaped cookies that took FOREVER to make and actually came out great- until my dog ate them.  The earrings with posts that were actually not made out of sterling silver as promised by the craft store clerk and gave the wearers a rash.  Really, other families have carols and hymns, we have a laugh track and slide whistle noises.

         But, so far so good.  Two of our projects have been successes.  We have high hopes for the third and fourth ones.  The gremlins must have gotten a little lost.  We're about 3/4 done with our gift list and not had to scrap anything and start over or call 911. I am calling it a success.  Eff perfection. God and the Universe are gonna have to grade me on a curve.  If they wanted perfect, they wouldn't have given me children AND adhd.  Besides Fiesty Pants is in love with cooking (amazing for kid who doesn't even really eat normally) and some of what we are doing is mix of cooking and chemistry.  So if I blow up the kitchen, I'm just gonna tell people we were trying to provide brain stim instead of shopping.  And if it works, I will never tell a soul that I simply learned to type EASY in big capital letters when I googled diy and homemade gifts.  Shhhh... it'll be our little secret.  

 Okies, so Goo (the hubby) is a genius. And so is my dad. Seriously.  For months now, I have wasted an awful lot of time  cleaning out and hating on Fiesty Pants' food pump.  The bags cannot be cleaned properly without wasting a lot of my day. And then lo and behold, they figured out how to bypass the safety feature.  (Don't lecture me on why we should not bypass a safety feature.  This stupid feature caused me to lose sleep and that's WAAAYY more dangerous, trust me.  My friends were starting a bail fund for me just in case.)

         So, I am gonna try to post pictures on how to do it.  My dad gets the credit on figuring out how we should be able to do it.  Goo figured it out from there.  So, for all of you stuck with this model (let's again call it  Schmangaroo Schmoey) here is how its done.

  When the pump is done and you want to clean the bag. Remove it from the pump. Rinse the bag itself several times with hot water. Then refill partially with hot water.  Find a place to hang like this:

       
Note- the end needs to drain into a sink. Otherwise you're back to wasting time.

Take the round part of the tubing.  I call it the safety doohickey.  But Goo is a computer tech and therefore anal about correct terms and says it is a safety valve.  Turn it around to see the safety valve.    Carefully with the tip of a butter knife (NOT NOT NOT a sharp knife), turn it 1/4 turn (90degrees)      

from this:

to this:

Allow the water to drain out completely.  Then simply reverse the turn back to the original position- like the second picture shows.

Easy peasy.  And  I didn't have to kill any nerdy tech types over it.  Just kiss the one holding a butter knife.  Huzzah!!!

Whew...

             So, after the craziness that was last week I thought perhaps we should take a breath and pause for a moment as it were.  From Turkey Day to Black Friday to Cyber Monday.  What an orgy of consumption. Whew.  Glad that's done.  It seems to bring out the worst in us.  I feel like we all need a good shower and to go to bed and think about how we all behave.  So, what's the emotional equivalent of alka-seltzer?

Seriously, anyone?

             Hmm, well barring anything better, perhaps the good old  standby of some gratitude for the universe.  So here's my latest round of much too belated thank yous.

               Thank you.   Thanks to  all those people whose jobs make them have to be available on holidays- nurse, doctors, waiters in restaurants open on holidays, kitchen staff in nursing homes, policeman and fireman and all those who sign up for the job knowing they will be at work or on call on Christmas and New Years and every other weekend and holiday. It's often not fair, but you never show it and often make other families holidays possible at all.   And especially thank you to those who should not have ever been asked to work on a holiday.  To all the retail workers and shift workers who have to not spend a holiday with their families because of someone else's greed.  It is DEFINITELY not fair and you deserve better.  (Personally, I am boycotting any store that was open on Thanksgiving until waaayy after the holidays perhaps permanently.  I don't want you to do well, you bunch of Scrooges.  My dollar may not count for much, but I sure as hell am gonna vote with it)  And to those stores who did choose to stay closed on Thanksgiving, THANKS, it's nice to see businesses act with some class. 

              And speaking of class, thank you to all those who work paid and unpaid for non-profits.  Whether anyone agrees or disagrees with your cause or charity, you are working with your heart and soul to try to make things better and that says something good about your intentions and soul.  I especially want to thank those who work for organizations who do e-activism.  You guys work really hard, for free or smaller salaries than a corporation would offer, all so annoying nags like me can try to do our part and make the world a better place.  With every petition I sign or link I post, I think of you guys who made it possible for me to have it so easy.  I don't even get out of my pjs or put down my coffee, to do my part.  Thank you so much.

                 And thanks to all those people in government service who work really hard and never get thanks from anyone.  When you mess up, everyone rides you forever and never lets anyone forget.  But when you do well, things run so smoothly , we don't even notice you are there. Meanwhile, the legislators, who work way less than you and get paid more, act like you are incompetent to make each other look bad.   I don't why you are all not bitter.  But time and again, you simply do your damn job without asking for thanks.  Thank you for making civilization run smoothly.

                  Most especially, thank you to volunteers who work in soup kitchens and homeless shelters and hospitals and places like Ronald McDonald House.  Thankfully, I don't know what it's like to be on the streets, but I do know what its like to be suddenly hours away from home with no real place to stay or idea of where to go for a meal or a shower or a bed.  Leaving a hospital after a reallllly long day of watching your kid be seriously ill and then finding a quiet room with a bed is like finding Shangri-La. 

                   More than anything though, thank you Universe.  Thank you for being wild and wacky and awesome.  And most of all, thank you Universe, for the fact that we were not in a hospital or Ronald McDonald House or crazy mall or ambulance or any of those places that have to stay open on holidays.   Thank you for arranging it that I got to stay at home and whine about cooking and the loud cats and my nutty family.  It was a good holiday.  And thank you for reading this. 

Morality

              Well, now, had an interesting conversation with Feisty Pants the other week.  She was happily sitting and watching tv when she burst into tears.  A cry /whine when she is upset or angry is typical, actual tears are not.  FP is one tough little kid. So we went running to see what was wrong.  When asked she said she was awful. Actually, what she said was "awful. ooooey oooey oooey."   That's her word for ouch.  We said "what's wrong?".  She said, " 'mergency.  Need a donut".  Both my kids are Daddy's girls, but this is getting ludicrous.  Especially since, because she made her father laugh really hard, she got an emergency donut.  And now gets an emergency donut every week at the grocery store.  Well, until this week, when FP informed her father that she needed an emergency cupcake.  Her sister, however might need an emergency donut so we should pick one of those too.  What is it about ten year olds that they are all such cunning little buggers?

                  I do worry with FP that we are not giving her enough of a moral foundation.  Her sister was easy.  Hippie Pants was born trying to save the world.  She was bringing home strays by the time she was two.(ANY strays- people, frogs, kittens, anything that stood still long enough.  And she always said the same thing.  "Mommy, he looks hungry. Let's feed him") HP stopped eating meat at age six- the day she found out where it comes from. ("That's just MEAN!!!")  Feisty Pants, however, is well, mostly feisty.  She doesn't like what she thinks is rude.  ("How ROOO") But that's not quite the same as empathy.

                And, it's hard you see.  It's really hard not to applaud  no matter what she does.  She's little. She's adorable.  She's feisty as hell.  And having watched her go through everything she has been through, it's really hard not to do cartwheels for any evidence of self determination or action at all. Or to get angry or stern when she quickly grows snarky and defiant to some adult who is treating her like an imbecile or an infant.  I want to smack them too.  So, this post is in a sense, an apology for whatever type of junior Bond villain she is quickly becoming.  I'll work on her empathy and manners.  You'll work treating her like an equal.  And hopefully, her father will only get her an emergency donut, and not that dynamite she has been asking for.