Tuesday, August 16, 2016

Torn

                    You know, when you have a special needs child you spend your life torn.  Torn between anxiety and joy.  Torn between fear and hope.   Torn between wanting to wrap them in cotton wool and bubble wrap and protect them from the mean, ugly Universe and wanting to wrap the whole damn beautiful Universe up as a birthday present and hand it to them on a platter -pain, happiness, fear, hate, love, disappointment, exhilaration -all of it.   To be honest, you are like that with any child but a feisty one seems to up the intensity exponentially.
                     And, so today, I am really torn. To be more precise, Goo and I are now torn. One of Feisty Pants' pets has died.   He was a cat that we had found as a kitten under our back porch, starving and bedraggled, too neglected to run, too scared to come in.  Goo coaxed him in.  (The cat wouldn't come near me for weeks on account of my apparently being the Devil.)  When we took him to the vet for shots and neutering, she told us that he had developmental disabilities due to his neglect.  So I suppose his shortened life span (eight years) was nothing to sneeze at. Originally we were not going to keep him and looked to find him a good home, but Feisty Pants took a liking to him so he stayed put.  And now Goo has no idea what to tell her.  And he kind of doesn't want to tell her at all.  (Hell, he didn't even want to tell Hippie Pants and she's almost a real live grown up.) 
                      But this is where I differ.  I want Feisty Pants to have the whole damn world.  I want her to live and love and learn and share.  But sometimes living is messy.  And sometimes learning is hard.  And sometimes sharing seems difficult.  And sometimes loving means letting go or getting your feelings hurt.  And sometimes your beloved cat who knew how to rub his head just right against your hand and help you pet him goes and betrays you by dying.  And then I want to change my mind and wrap her up in cotton wool away from the Universe because maybe I am mean by expecting my children to ever face the world and we should all just give up and stay children in our blanket forts, coloring, for the rest of time.
                      Or maybe, the lesson pets teach us is that you never really know how long love -real, honest love for any fellow creature can last until they go away and you find you still love them and that is exquisitely beautiful in it's own way.   That love is caring and learning to let what you love grow and learn to dance away from you.  Maybe what is making me feel torn is knowing that I may need that lesson more than my feisty one.

                                  For Casper, wherever you are dancing, right now...

Tuesday, August 9, 2016

Trekking the Himalayas

            So here we sit in an E.R. sigh..... And our day started our so normally.  Feisty Pants seemed fine as she went off to school.   But within an hour or so, the nurse had texted that she seemed warm.  Then within an hour of that she texted that FP was pale and her sat rates were dropping. So home she came.  I didn't think she looked toooo sick. But I called the pediatrician to get her seen to be sure.  When told about her symptoms, he requested we take her the E.R.  annnnndd off we went.
          Not that I am  totally opposed to this place.  It's a good place.  It was nice to see some people who have taken very good care of Feisty Pants in the past.  But everything  takes effing forever here.  And I had to wake Goo after three hours of sleep.  And dinner in a hospital is never exactly a fine dining experience.  (Note to entrepreneurs -you could make a mint with a food truck parked outside any hospital, anywhere.)
            But here we sit over 5 hours later. We are on the second shift of nurses. We had the x-rays.  Her lungs are clear.  Had the urine test.  That's clear too.  Had the blood work.  It does show a slight increase in her white blood cell count.  There's an illness in that little bundle of awesome somewhere.   So I am hopeful we will be sprung from this hoosgow soon.   It's just that it takes forever.  We really could have done this in a doctor's office.  I do realize that the doctor would rather be safe than sorry.  But oy why does anything medical take so long?  Feisty Pants passed feisty and has achieved bitchy pants about an hour ago. If it weren't for the free wifi, I would be bitchy too.
            So, now it has been seven hours.  We have escaped.  The final verdict was a virus and a bronchial spasm.  No biggie.  Just bring her home.  Give tylenol as necessary.  Up her asthma meds for the night.  Keep her home from school tomorrow and check in with her regular doc to see if he wants to change or add anything.  Not a biggie.  But seven hours of non stop bitching, some of even from Feisty Pants (Gives that look to Goo...) has me feeling like we trekked across the Himalayas.  Barefoot.  Uphill. Both ways.  


Tuesday, August 2, 2016

A Day in the Life

        Typical summer's day in Feisty Pants Land.  FP goes to school year round. So tonight's a school night.  Feisty Pants is watching Karate Kid because cute boys, duh.
She sees a commercial for the next movie (on immediately after), The Amazing Spiderman 2.
Feisty Pants: SPIDERMAN!!!
Goo:  Well, it's shower night so you have to take a shower.  Do you want to take it now before Spiderman comes on?
FP: NO
Goo:  Well then, do you want finish this movie then take your shower and miss the beginning of Spiderman?
FP: NO
Goo:Well. Sweetie, pick one. Either way is ok, but you have to pick one.
FP: NO. Watch Both.
Goo: Sweetie, you have to take a shower tonight before 8 (She gets fed at 8 which involves being hooked to a machine.)
FP: Karate!
Goo: Ok, then we will go after Karate Kid.
FP: NO!!!!! SPIDERMAN!!!!!!!!!!
Goo: (in best patient dad tone) You gotta pick one or the other.
FP: NO! BOTH! (emphasized with kick)
Goo:  I don't know what to tell you sweetie.
FP: NO! BOTH! wash hair morning.
Goo (thinking he's calling in reinforcements):  Well, you would have to ask your mom. I don't know....
FP: MOOOOOOOOOOMMMMM.  SPIDERMAN!!!!!!
Me (because eff it, it is summer...): I suppose it would be ok.
FP: (Big smile to her father ) WIN!
Goo: You don't win this.  How do you win this?

FP: SPIDERMAN!!!  and funny.
Goo: How is this funny?!?
FP:I WIN.

Friday, July 29, 2016

Whew...

                   Whewwwww.  What difference a week makes.  The past ten days have been hot and crazy but incredibly productive.  My mother had surgery on her very broken neck and has been transferred to a rehab hospital.  Goo and I took Amara to Shriner's  Childrens Hospital in Philadelphia and they have agreed to do her scoli surgery.  So, since I spent the last post whining and bitching, I guess I ought to make this post about what I am grateful for.  So, in no particular order I am very thankful  for the following.
                    1) I am very grateful that my incredibly stubborn mother gave in and had her surgery.  I do not know what force of nature changed her mind, but may the heavens bless them.  She is doing very well for a spinal injury patient with bones of an ancient hummingbird.  The whole family is breathing a collective sigh of relief right now.
                   2)FP is REALLY happy with school this summer.  Her nurse is, as usual, awesome. We knew she would have a different teacher. So far they have all been great but I worry. (She had progressed/aged out of her last class.) She got a teacher she had before that she adored so the atmosphere for her is relaxed and comforting.  And she is really digging the summer's curriculum.
                   3) The trip to Philly went really well.  We were a little scared because of the traffic.  Coughcough DNfreakinC cough.   But the drive went swimmingly.  In fact, we  were early.  And then they took us in early instead of making us wait. YAYYYY  And then they agreed to do her surgery (sometime after Christmas) double YAYYY.
                  
                 So now, we have a ton of stuff to do to make arrangements.  And it's still  effing hot (are all you winter whiner's happy??) but but but, the major crises and obstacles are done and over with, and turned out remarkably well. I am so very thankful. You will have to excuse if I'm psychologically whistling while I work right now. Thanks for reading.

Monday, July 18, 2016

Monday Monday Monday

               Oh, today been has the Monday-est of Mondays. Sigh... The cat peed on Feisty Pants' bed.  And her crash pad.   For the uninitiated, a crash pad is a large foam filled seat/mattress thingy.  Like a really big bean bag.  In our case, a futon cover filled with blocks of industrial foam. (Disabled kids often have seating and positioning issues and you have to get really creative, or rich.)   Notice I said industrial FOAM, you know like a sponge. Great for soaking up liquids. Took almost half a gallon of white vinegar to clean it. The cover is still in my dryer as I type this.  (Damn dryer is temperamental and old and cranky. I think it's balking at the heat and humidity.)
                Cheweverything Pants has decided we pay too much attention  to the cats and has taken to clawing her ear open randomly.  Just enough to make the house look like an episode of CSI:Veterinarian's Office.  (She has allergies and her ear itches.) We have now taken to buying veterinary superglue.  (Don't bitch at me, we tried EVERYTHING else- bandages, ear wraps, a homemade doggy babushka.  She MacGuyvered her way out of all of it.) 
                 Last week, my elderly mother fell down the stairs and literally broke her neck and is currently balking at the needed surgery.  I don't think she realizes that what she is risking isn't pain or life and limb but her independence that she values so highly.  She may have changed her mind by now.  I don't know.  No one has called me and my dad is certainly with her in the ICU where no cell phones are allowed.  (C'mon Facebook, don't fail me now.  Surely one of my gazillion relatives will post soon.)
                We did a small favor for FP's nurse and she did us a HUMONGOUS solid by giving us a gift card to a restaurant so we would not have to cook in this stifling humidity today.  So I promptly celebrated by dumping guacamole down my bra in public.  Go me.

               So dear reader, I don't mean to bitch or whine at you.   But Feisty Pants is a lot of work and anytime you have a disabled kid, EVERYTHING becomes more time consuming.  I live in awe of how anybody ever deals with more than one feisty kid at a time.  Or becomes a member of the sandwich generation and cares for a feisty one AND an elderly parent at the same time.   Those people deserve chocolate and lottery wins and big ass halos.   But if I am gonna be honest about this journey, I have to portray the good crazy and the bad crazy.  You gotta know some days will be effing MONDAY all effing day.   Don't worry though, it passes, it really does.  Fridays and bedtimes will come back again.  I promise.  I wish you all peace.

Thursday, July 7, 2016

In which Feisty Pants finally does something fun finally

                So I haven't posted in week or two.  Feisty Pants is out on break right now.  Usually that means we have a little more time to get things done, but not this break for some reason.   Which of course just means Feisty Pants is oh so bored to tears with her horrible, no good, old fart family.    I don't she how she manages.  It must be like being a prisoner in the boring wars.  Just ask her.  She will tell you. (Last week, she told her nurse we keep her locked in the basement just to be evil to her.)
                Not that I blame her.  We are just so totally evil.   First we managed to commit germ warfare and give her a mild summer cold last week.   I don't know how- she and her sister were the only ones to have it.  But she is sure it was us.  Just to keep her "tuck at home" (stuck at home) .  Forget that she actually was only mildly ill for a couple of days and still got to go on a train ride to Cooperstown with cute boys.  Or, as Feisty Pants gleefully told her sister, she went on the Hogwarts Express and her sister didn't.  But still didn't count 'cause we are EBIL EBIL EBIL (that's how FP pronounces evil).   
                 And forget the Fourth of July.  We cheaped out by deciding to have a sundae bar with cake and ice cream and then setting off an official crap ton of fireworks.  Why did we not have a full party?  And she has seen real fireworks on tv- these were not it. They didn't go into the air like real ones. Sheesh. And forget that she was giggling and laughing the whole time, Feisty Pants was just being nice.
                Do not even bring up yesterday at all.  We dragged her to Syracuse and got her salivary glands botoxed.  For which we should be raked over hot coals.  If it works and means she does not get pneumonia well fine, but that is not the point.  The point is we are mean and made her go see the local torturer to get her face stuck with the world's biggest needle. The sadist was quick too.  He kept jumping out the way when FP was trying to kick him right in his Ph.D.

                 But, today, oh today, we finally got things right.  We let her out of her tiger cage in the basement.  She went shopping with the nurse and found a new bathing suit.  ("All red, white and cute without peachy."  I think she means red, white and blue- cute without being preachy.) Then the nurse met us at a county park with a BEACH and SWIMMING and best all- CUTE LIFEGUARDS.  Hell, it might have made up all the torture we put her through on a daily basis.   She only had wait thirteen years for it.

Sunday, June 26, 2016

Beat the Heat

          Well now, it is well and truly summer.  Officially second level of Hades here.   In other words, we are miserable.  No one is getting enough sleep.  The heat seems to sap the energy right from your bones.  Feisty Pants has declared a moratorium on pants.  And I am too hot and crabby to fight her.  Our world has sunk to the two rooms we can keep cool with the air conditioner.  Our grill has become our kitchen.  Dinner has become ice cream and fruit.   Are all you weenies who whined about the cold spring happy now?   This is why we can't have nice things. 
          So, anywhoo, before I get too cranky and pull this whole damn house over, I'd thought I would list some beat the heat type tips.  (You're welcome!)
1)  If you have a feisty one or elderly relative or medical reason for needing cooling assistance AND your/their income meets the requirements, you can receive a fan or air conditioner through HEAP (Home Energy Assistance Program)   You will need to meet the income requirements and provide a doctor's note to prove eligibility.   The link for New York State info for that is here.  (Scroll down to cooling assistance.)
Don't live in NY? Google "cooling assistance, heap, + name of your state here".
2) Your freezer is your friend.  Freeze cut up fruit and use in water, teas, diy sorbets. Stick your top sheet in there for thirty minutes before you go to bed.  Throw your t-shirt in there before getting dressed.  Stick a bowl of ice in front of a fan .   Shove a popsicle stick into individual sized yogurt cups and freeze for diy fro-yo.   Let the kids have that for breakfast. (Ice cream -it's not just for dinner anymore.)
3)Water loves you too.  Get a cheap kiddie pool and use the hell out of it.  Let the kiddos splash morning noon and night.  Let the dog in the pool too.  Sit it there with them.  Let the neighbors laugh- you will cool off and you can claim it's good parenting.  Host a water balloon fight.  All the neighborhood kids will sing your praises. Teach those whippersnappers of yours that grown ups can win a watergun fight too. Definitely don't forget to water your insides too. Kids can dehydrate really quickly.  Make everyone drink a lot.
4)Do the heavy duty stuff first. Or last.   Do the heavy hard work first thing in morning or after the sun sets.  It's hot and miserable.  Don't make it worse by doing your life's heavy lifting under the merciless sun.

             So, there you go.  Try to stay cool. If you need us, we will be laying on our living room floor saying mean things about all you freaks who love summer and praying for the Pumpkin Spice Fairy of Autumn to come and save us from you all.