Might I Suggest

   So, NBC news put out a request for people to send in caregiver stories and suggestions for caregivers for the holidays.   Which got me thinking. (You're welcome!)  Since a lot of what I ponder ends up on this blog- eventually, sort of, in weird and wacky ways, I thought I would make my own list of suggestions for the holidays both for caregivers and those who are stuck dealing with, um er, I mean care for the caregivers in their lives.  In no real discernible order but numbered 'cause it looks organized (fake it til you make it) here goes:

For Caregivers-

1) DO. WHAT. MAKES. YOU. SANE.    NOW, REPEAT AFTER ME-  DO. WHAT. MAKES. YOU. SANE.  (I even submitted this one to the nice news lady.) It's your damn holiday and caregiving is hard.   Love, love, love the holidays? Put up your tree- or four- sing carols, hang ALL the lights-  in July.   Make all the foods.  Or not.  Have a potluck so you only have to cook a little. Turn off all the lights and pretend it's not a holiday.  Have pizza or Chinese food. You do you and don't apologize one bit to anybody looking in from the outside.  Are they getting up and helping do meds or clean messes at three am? Are they helping you schlepp Grandma to the yet another doctor appointment? No? Then they don't get to make the rules.  We're obnoxious about holidays in Feisty Pants Land.   Our Dear Leader likes twinkling lights and holiday specials.    Halloween starts on Labor Day.   Christmas Carols begin at midnight November first by royal fiat.  Our tree is up usually by Veteran's Day.  Complain and we will put up one MORE string of lights and post a sign naming them in your honor.  Complain twice and it's off to holiday re-education camp for you with enforced jolliness and nonstop Hallmark movies.   

2) Say yes to the party- at least try to go. It will help to get out of the house once in a while. And make it a provisional yes. If it doesn't work- go back home and DO NOT FEEL GUILTY. You tried. It counts. (see number one) 

3) Find the easy way to do everything.  You are not Martha Stewart or whatever Food Network star you admire at the holidays. Buy the premade gingerbread house you just have to put together. Use premade cookie dough.  Go out to eat.   Buy the dinner premade. Order all your gifts online and let the post man deliver them.   Make the holiday fit your budget for both money and time. If anyone complains stick a store bought cookie in their cookie hole so fast their head spins.

4) Lighten up on yourself. You're dancing as fast as you can.  Anytime you're overwhelmed, eat a cookie and see rule number one.

  

For everybody else-

1) Ask before you buy.   Feisty Pants has about a trillion stuffed animals.  And probably should not have any. But here comes Christmas so she will get at least four more.  Sigh. I get it  She's fun sized and adorable and evokes soft, fuzzy feelings in people.  So they want to give her soft, fuzzy things.  But they are not good for people with lung issues.  I have given away hefty bags full of them. And she is first and foremost, a teenager who wants hair dye and movie tickets and make up and to go bowling and to hold hands with cute boys.   Ask me what she (or what any disabled person) could use.  We will tell you. 

2) Invite us to the parties.  We will probably say no.  But not being included feels like being forgotten to some folks. So ask anyway even if it's only a formality.

3) Really, really, really wanna help? Do something we never have time for. Sit in our living room and keep Grandma company so we can take a shower or a nap. Help shovel the walk or mow the lawn.  Drop by with cookies or help string lights on the porch. Stick a ready made meal that only needs to be popped in the oven in our freezer. 

So, there you go.  There's my suggestions.  I hope they help.   If all else fails, go back to rule one.

Kumbaya

                         So dear reader, as I imagine you know by now, I do try to be somewhat sensitive to Feisty Pants' (and everybody else's ) privacy.  I make up funny nicknames. I try to not give out too many embarrassing details about my teenage kid (What? I do too try!)   After all, I really only have the right to tell my story from my point of view. But right now, I am so frustrated I just want to name names, and dates, and let privacy go take a flying leap at itself.   Who am I kidding, I wanna grow fangs and howl at the moon because I feel stymied and angry and thwarted. 

                          Allow me to explain, my daughter attends a school program run by the county not our school district. It's a good program and a good fit for Feisty Pants but involves two different schools.   BOCES runs the actual school. Our local district pays for the program and is responsible for transportation.  The local district outsources the transportation to a for profit bus company.  When this works well, it all goes along swimmingly.  When it doesn't, it's a nightmare of buck passing and bullshit.  Which is exactly what it is right now.  You see the bus company provides transportation for the entire district. I suspect they don't have enough actual buses.  Which is not really my problem.   But it does mean they do things like DROP OFF FEISTY PANTS ALMOST HALF AN HOUR AFTER SCHOOL STARTS AND PICK HER UP ALMOST FORTY FIVE MINUTES BEFORE HER SCHOOL DAY ENDS.  They have always picked her up before the school day ends (which I hate), but  in earlier years they at least got her there on time. Now they don't bother with the pretense.  It is as my friend Awesome Pants puts it, blatant discrimination.  I prefer textbook violation of my daughter's civil rights. Especially as now she is dropped off just before 9am (her school day starts at 8:30) and is picked up at around 1:45-1:50 pm (her school day ends at 2:30).   In years before when I complained, I was told she was getting her state mandated five hours of instruction.   She is now 16, so it is five and half hours of mandated instruction.  Oh and by the way, typical students' lunchtimes do not count so why does hers???   If you do the math however, she is getting, at best, 4 hours and 45 minutes.

                         And so I complain.  First to Broome-Tioga Boces, where she goes to school. They brush me off by telling me that it is her home district's issue to fix because they provide the transportation. Then I go to Binghamton City School District. They claim it's up to the busing company, First Student.   Then I go to First Student. They claim it's all up to Binghamton and they are just doing what they are told to do.  Everyone is very polite. And NOT ONE DAMN THING CHANGES, even though this is ILLEGAL. Any one of these entities could fix this.  Boces could refuse to allow the students to leave the classroom  before school is over.   Binghamton could tell the bus company to provide enough buses so they didn't have to shorten the special education students' days. First Student could suck it up and do their job properly instead of maximizing their profits at the expense of the students' educations. But no one does anything and I am treated like the I am unreasonable, or worse, I just "don't understand" because I think my disabled child's education is more than just glorified daycare.  Or even more worse, that I am just shrill and complaining. 

                      Honestly,  I am not trying to be controlling. If Feisty Pants could get all her therapies and make it into college by going to school fifteen minutes a day I'd be totally fine with it. But I am so effing tired of being expected to act as I should be grateful for any little pittance society throws our way because being disabled means somebody might have to spend money. My child is no less deserving than any other human being on this planet of an education and necessary medical care and an equal chance at a full, autonomous life.   And I will do what it takes to get that for her because that is my job.  If you, random bureaucrat, at the end of the day  wanna hold my hand and sing Kumbaya, cool.  If at the end of the day, you give an involuntary shudder every time I ring your phone or hit up your inbox, I'm still cool because making you happy is NOT my job, especially if Feisty Pants is the one giving something up because you don't want to do your job properly.

Skip to my Lou

                  So Goo and I have decided to let Feisty Pants skip a day of school.   We really debated it back and forth. She probably misses about 30 days a year an average.  That average used to be 45 days a year- so yayyy progress!  Illness, doctor's appointments,  more illnesses, days we couldn't quite get her off the oxygen after an illness, even more doctors appointments. You get the picture. I hate to have her miss extra school days but...   But, But, But,  I hate even more for my kid, who misses out on so much of everyday life we take for granted, to miss out on any of the day to day stuff that makes a life.   In this case, skipping a day of school and hanging with Boyfriend Pants.  

                 There are circumstances. Her school is having a field trip that day. One which she only partially takes part in. They go to the county fair- but my kid can't ride the rides or eat the foods   She loves the animals -but they do sometimes set off her allergies.  It has been particularly hot and humid this summer. Which she does not handle well. At. All. And in Feisty Pants' mind, Boyfriend Pants won't be going so what is the point anyway???  (Can you tell she is sixteen?) She could be one of the kids who goes to school but does not go on the field trip that day but that leaves a terrible taste in my mouth and soul. It's like being the kid who watches all the other kids play baseball while they are stuck practicing the oboe inside.  I don't know what they do that day- I hope it's have a pizza party but I have horrible, boring versions of the Breakfast Club running through my head as I type this.  Normally we would watch the weather and pray for the best (C'mon, overcast and no heatstroke)

                 But this year, when Boyfriend Pants' mom messaged me on FB and extended an invite for FP and Hot Pants to go sit an air conditioned theater and watch movies, we decided to throw parental sternness (sternity? sternition? what's the nicest word for we decided to take the parental stick out of our asses?) to the winds and revel in her chance to be an obnoxious sixteen year old.  Feisty Pants is utterly enthralled at the idea of being totally bad ass and skipping school, going to movies, and "making out in the back row"  Don't make comments- her version of making out is putting kissing noises on her ipad and pushing a button to make the noise at Boyfriend Pants while he smiles and blushes.  It's a remarkably pg rated version of rebellion on her part, so ctfd people.   My only real concern is what I say if she's busted for truancy. I can't claim ignorance- the child is in a wheelchair she cannot operate alone so how can I claim I am sure she was in school all day?   I guess I better come up with a good excuse by the day in question or buy a harmonica for Feisty Pants and I to use the pass the time in detention together.   If you can't reach me, that's where we will be. Smack dab in High School Joliet. 

No Slacking Here

                      Anndddd now it's summer vacation.   Ahhhh summer, that time of bugs and weather that feels like God's armpit.  Of brain drain and sticky popsicle fingers and kids who are so looking forward to yelling "I'm BORED!" at their parents. Hot, sweaty nights and whiny, cranky days.  I totally get why everyone loves it so much.  (Only 133 days til Halloween!!!) Sigh, at least with lawn mowing, it smells good.  With Feisty Pants, it's really only summer vacay lite.  She goes to school year round.  She has about two and half weeks off now until the summer session starts .  Afterwards, she will have another two and half, three-ish weeks at the end.   We can totally handle this.

                      So, no brain drain for my kid.  I swear. It's only two and half weeks.  We can hit up parks, go to the library, watch only educational youtube videos. I mean she won't have all her therapies (Her therapies are the reason her school has a summer session.)  but we can at least keep her little noggin occupied. We got books on tape for her.  I am sure I can download some Shakespeare or maybe Narnia or even the Dealing with Dragons series.  I also absolutely certain we can youtube some crafty or science experiment ideas on the interwebs.  She has a tie dye kit she got for birthday floating around here too.  It's been a while since I scared the nurse with her having blue and purple dyed fingertips.

                     I mean, c'mon. This isn't my first teenager or my first rodeo.  We have free carousels in the area and places to swim.  Parks with the occasional festival and concert and free movie. Maybe hit the local Y. I'm sure we got summer in the bag. Suck on that all you "good parents" with your silly STEM camps and Disney trips and oh so wholesome summer activities. We'll be home learning circles around your pretty little Instagram posts.  There will be no brain drain.  No lying on the floor in the ac staring at the tv or binging on videogames.  Not for my feisty little Einstein.

                     I mean, it's only the first day and we are off to such a great start.  A breakfast of tater tots and popsicles followed by a home screening of Attack of the Killer Donuts.   Watch in awe, other parents, watch in awe.

                    

My Apologies

              Sigh, so Feisty Pants is having botox shots tomorrow. For the uninitiated, botox is not just about making starlets and trophy wives look like unemotional Vulcans.   It is actually a godsend for those with migraines or spasticity issues like Feisty Pants.   FP actually gets two kinds of botox treatments, one set of shots for her salivary glands (to dry her mouth and control secretions) and one set of shots for the general spasticity in her arms, hands, and legs.   Botox is a very important tool in our arsenal of things to keep Feisty Pants on the straight and narrow, health wise.

              And since they are two sets of shots by two different specialists, we have to stagger having them done.  CAREFULLY stagger, since we don't really want her to go with out the botox in her system doing its job AND you cannot get too much botox all at once. (When she was younger it was done all at once. I am unsure of the reasoning behind the change other than we lost the genius doctor who could do so. Insurance companies can all suck my  #$@%. Vampiric b@#A$%s making money off of the pain and suffering of others.  There is a special place in hell for anyone who sees a human being who is ill or injured and thinks, "Oh Boy!  I can make some effing money there, yessirree!  They'll pay through the nose. " Effing soulless leeches.   Ummmm, what were talking about? oh, right.)

              Anywhooo, the darn botox is very important so usually I am right on top these appointments.   Which we have about every three months.  First, the ENT for salivary shots.  Three months later, the physiatrist for extremities done under anesthesia.  Three months after that the ENT again. Repeat ad infinitum. It's just one of our rhythms of having a feisty one in our lives.  So how the eff did I forget to schedule the clearance for anesthesia appointment with her primary doc?   Thank heavens, the doc (or his office staff, at least) is very accommodating to us and is graciously squeezing us in for the appointment.  And thank heavens, for the secretary of the physiatrist for noticing we had not sent the paperwork and nicely calling to ask. And thank heavens for whoever invented the fax machine so we can just have the paperwork sent and it will get there in time.

              So my apologies to the massage therapist, who I cancelled at the last minute because I am, occasionally, an idiot.   And my apologies to Feisty Pants' nurse, Hotpants, who probably had plans with FP this afternoon and I just commandeered her services for the afternoon rather than wake Goo. And definitely my apologies to new guy Zack, at the doctor's office who had the misfortune of answering the phone to a half crazed parent going, "listen, this is what you're gonna do for me.." because when it comes to Feisty Pants I have no scruples or tact.  Or phone manners, if I'm being honest.

              If it helps any of you guys, I will be paying for my zeal tomorrow at 4:30 am when I crawl my tired, crabby ass outta bed to drive two hours to the appointment for the shots.  You know what they say. Sometimes, if you're really good, Karma lets you watch.

      

Having Words

                                I mentioned in (on?)  this blog a while ago, that one day I would say why a dirty word is my favorite word.   For some reason, today I feel ready.  Probably because it's been hectic and a little busier than our version of normal. I find myself a little tired and overwhelmed. When you have a disabled kid, especially a complicated one like Feisty Pants, there's a sense of urgency about getting every damn thing done now, like right NOW,  because a part of you knows you will never get back to it.  My favorite word is in many ways about love and defiance and right now I feel the need for a shot of defiance much the way we want an extra shot of espresso to handle that afternoon energy slump. 

                               So, the story is actually Goo's.  It's from his perspective.  When I was in labor with Feisty Pants,  the placenta abrupted ( the placenta separated from the uterine wall before it was supposed to) and it got hectic quickly.  Feisty Pants stopped getting oxygen and her heart stopped.  I hemorrhaged and bled out. We both died, basically, in childbirth.  Goo, who had been shooed out of the operating room was watching through a small window as all hell broke loose.   He said the surgeon was working on me and the respiratory therapist was doing cpr on Feisty Pants.  After a while, the doctor looked at the rt and said, "Do you want to call it?" (Meaning call her time of death) 

                                The respiratory therapist says, "No" and keeps working.

                                Goo said after what seems like a million years, the doc looks at the rt again and says, "Do you want to call it?"

                                The rt says, "NO" and keeps working.

                                After yet another million years, the doc says, "I SAID, Do you want to call it?!?"

                                Goo says the rt whipped his head up, looked Goo right in the eye and says very clearly so all could hear, " You can fire me tomorrow but FUCK YOU, NO!"

                                And like that, Feisty Pants' heart started beating again.

                                                                                                                        

                               So you can all say what you want about swearing and manners and civility.   You can say all you want about goodness and light and love.  Sometimes love comes in weird and wild ways. Sometimes it's not the kind word or sweet gesture that makes the difference. Sometimes defiance is a form of love. Sometimes stubbornness is a form of caring for your fellow creatures. Sometimes, in the darkest of moments it's the human being who is willing to defy the odds and face the storm with you, even if only for a moment, that makes it possible to stand back up and put one foot in front of the other.  Sometimes "fuck you, no"  sounds an awful lot like love..

BTW for those who heard this and asked- we never even knew his name. Hubby hugged him later but forgot to ask.   Someone at the hospital did tell us he had moved away soon afterwards.   I like to think he is out there somewhere spreading love and f bombs like they're glitter. 

Also BTW- if you are reading this and it was you, thank you.

The Busy Season

                             Soooooooooo, it's been about a month since my last post. We've been crazy busy.  Feisty Pants had oral surgery. Four impacted wisdom teeth, One other molar attached to one of her wisdom teeth.  Two premolars that grew through the roof of her mouth because her mouth is small. Feisty Pants is fun sized- so everything about her is a little too, well, little.   The oral surgeon was an optimist. The office expected her to be in and out and on her way in one day.  After anesthesia. Oh, they were a hopeful bunch, those guys.   The anesthesia irritated her lungs and, coupled with a little more bleeding than expected, ended up causing a four day hospital stay.  Which Goo and I totally expected going in. Otherwise though, FP sailed right through.

                              And we are getting ready for more anesthesia.  Feisty Pants needs to have a CT scan to check her hardware. (She has had a complete spinal fusion and is robokid.)  She either cannot or will not sit still -it's kinda hard to tell which and a moot point anyway, so under anesthesia she goes. No biggie really, but this means paperwork and clearances and out of town trips again. I literally had a message from one doctor's office that said, "We want you to get the authorization first before we give the authorization so the authorization does not expire too early for the authorization."  The craziest part of that is that I understood it.

                              And it's IEP season- for uninitiated that means meetings and paperwork as the school plans her therapies and goals for next year.  Which will either be tense or simple based on whether or not the school is trying to cut back on therapies again. I fully plan on being a pain in the ass about that. This is NOT a kid who needs LESS therapy. Her school has a whole day they set aside for these meetings.  I just found out the day is tomorrow.  As far as I know I don't have a meeting- but someone might have just forgotten to notify me and I won't know before tomorrow anyway. 

                               And it's prom season.  Feisty Pants is over sixteen  and thus, eligible to go to her school's prom. EVERYTHING is about the prom for her right now. She got a pixie cut so she would be cute.  She insisted on dying said pixie cut lavender so she would look fab and "tand out". (Stand out)  She has two dresses already but just might want something else- she has not decided. She changes her mind daily on what adult she will allow to take her (someone has to suction if needed) because she doesn't really want any of us cramping her style on her big night. I love it when she is so excited about anything, but this is strange to me.   I was indifferent to such things as proms. But FP thinks she's frikking Cinderella. 

                              And we are losing our direct service person. Care giving is a hard job in a million different ways and she is moving along to another.  I wish her well. But this does mean we are going to be finding another member for our team- which is harder than it sounds.  You have to find the right fit or the chemistry of the team just goes all awry.   Plus it's spring.  That's the bi-polar season of snow one day, seventy degrees the next, and raining pollen and mildew spores all the while. Not normally her best time of year, but so far so good. It's almost like the kid has been too busy to remember to get sick.  I cannot really complain- it just seems like we don't stop to catch our breath anymore.

                             Originally, I had the idea of making this post about the importance of self care for caregivers.  That will probably be next time.  I just gotta remember what the heck that is again. 

Sixteen

           Originally I wanted to entitle this post Out of Exile.   I have been absent from this blog since November. Not by choice, or necessity, but by some damn interwebs glitch wherein Google wasn't speaking to me.  That's a whole geological epoch in internet time.  Civilizations have risen and died. Species have been wiped out. Insert some sort of ice age/comet/second coming of various saviors joke here.    But now I'm back- cue the Eminem song, please.   Google in it's weird, infinite wisdom has allowed me to recover my account and here we all go again.   No need to thank me.  You're welcome, citizen of the interwebs. 

           So what have I been doing these long winter's evenings?   Other than banging my head off the keyboard in frustration? Hmmm, lessee.  There was Turkey Day and Christmas tree trimming (not in that order)  Christmas in Brigadoon.  New Year's Eve consisting of being happily boring at home.  Second Christmas at the in-laws. (We're like Hobbits that way.) One more surgery scheduled for Feisty Pants- wisdom teeth.   One more test she will have to be sedated for. (Hip scan to check her hardware from the last surgery.)   Almost weekly out of town trips to various specialists. Is this Tuesday? It must be Philadelphia.  Friday? Oh, yeah, Rochester.

           But, mostly I wanna talk about two AHMAZING things that have happened.   Last fall, Feisty Pants' pulmonologist pulled her cpap machine declaring she did not have sleep apnea and did not need it. Simply put her back on nasal cannula and o2 at night.  FP has been on oxygen at night since she was born. I was told she will never come off. She did so well without the cpap, they tried to pull the o2. It worked. She is no longer on oxygen unless she is sick or having an asthma attack.  And today is her sixteenth birthday. 

           When Feisty Pants was born, she spent six weeks in our local NICU.  One of the last things the neonatalogist said to me was, "You need to know you are probably taking her home to die." So far, she has not bothered to do so. Today she turned SIXTEEN. Sixteen years of work and worry and hospital stays and specialists and meetings and medications.  Sixteen years of roller coaster highs and lows. Of the hubby and I holding each other back so we didn't punch doctors who forgot how to be people. Or reminding each other not to hug strangers who made a huge difference without realizing it. Of yelling and typing and yelling some more at bureaucrats and insurance people and politicians. School teachers who made us howl at the moon. School teachers who made us shout with joy. Of high fiving FP for swearing.  Of early Christmas trees so we never miss them. Dinners at 3pm or midnight.  Easter and Thanksgivings at Chinese restaurants. Some days this journey can be really hard.  Needle sticks and medication regimens and sleeping and working in shifts to care for a disabled kid can be tough.  Today is NOT one those days. Today my baby who was supposed to not make it got a bracelet from her boyfriend that says" Warrior". It was a sweet gift.  But we already knew.

Happy Sixteenth Birthday, Feisty Pants.