Her Name is Amara

                 It's been a while since I posted.   I have written several posts.  But every time I scrap them.  Too jokey.  Too smart alecky.  I wanna whistle past this graveyard.  I wanna stomp my feet and act all feisty and bad ass and act like we ain't scared of no covid.    But I also need to be honest.   And I am honestly terrified.

                 Amara has had pneumonia probably about 60 to 100 times. She has had over fifty hospitals stays.  Maybe close to sixty.  We lost count at 24 hospitalizations.  She was three years old at the time. I remember her pediatrician once telling me he knew it was over forty.  She was five then. So, let me tell you why I am terrified.   But first let me tell you about the worst 24 hours of my life.

                  Amara was ten months old.   (I am not even calling her Feisty Pants for this post.  She is more than just my daughter, she is an amazing human being and deserves for you to know her name.)  She had already had six hospital stays by then. I think. It was December 8th. 2003.  I had gone to bed around 2 am with her seeming just a little bit under the weather but no biggie. At four am as I was just drifting off, my husband was yelling for me to get up and call the ambulance. (not the first time)  We went to the ER. She received a few breathing treatments and several hours later were sent home. A few hours after that she started breathing very rapidly and shallowly and I had to call 911 again.   After several hours in the ER, they had decided to transfer her to another hospital.  I came home (leaving her dad with her) to shower and pack a suitcase.    I was just getting out of the shower when my husband called in a panic.  He just kept screaming, "Get here now!  Get here now!"  I dropped everything and ran out the door.   No coat, no bra, no boots- just sweats and shoes.  When I got to the ER- it was essentially shut down to visitors.  When I came in security at first stopped me until someone said, "No, let her go. She's the mom."

                They thought my ten month old baby was dying. She was being intubated as I walked in.  The hospital had no pediatric ventilator.   A respiratory therapist sat with an ambu bag and squeezed air into her lungs for hours until his hands cramped so badly he had to get another rt so he could go ice his hands. The three nearest children's hospitals were full.   (Syracuse, Albany, NYC)  Rochester agreed to admit her but could not send a helicopter due to weather. It took four hours for the ambulance with a pediatric ventilator to arrive.   My mother in law and brother in law happened to swing by the hospital and were mistakenly told by someone they knew who worked at the hospital that Amara had died. 

                  The ambulance crew showed up around midnight. We probably got to Golisano's Childrens about 4-5 am.  The doctors there thought perhaps she didn't need a vent and they could use another type of breathing assistance. (I don't remember which one they wanted to use.) So they came in to extubate her.   It failed.  They had to do cpr on her and re-intubate her.   They don't usually have the parents in the room when they do this.  They forgot to ask me to leave.  Half way through the chaos I heard someone go,"Who is the woman in the corner?"  A nurse said, "Oh my god. It's the mom."   Some resident rushed me out of the room. 

                   I sat in a little waiting room.   I had no cash on me at the time. I hadn't slept in three days.  I was wearing raggedy sweats and no socks with my shoes. It was Rochester in December.   And I had just watched them do CPR on Amara three weeks before her first Christmas.   A doctor later told me I was eerily calm. I was simply too scared to breathe until she did.

                    So, let me tell you why I am terrified.  Let me tell you why hospitals don't have the equipment they need.  It's all about money.  Every cent they spend on equipment means less profit. Every ventilator has to have technicians and therapists and nurses who are trained to use it.   Children and adults don't use the same one. Hospitals usually only have a few because when hospitals aren't very full they just transfer those patients who need a higher level of care to a bigger hospital.  That way they "keep their costs down" which is code not for saving money but for saving profits. A for profit health care system does not care about saving lives on a managerial level.  They care about saving money.   That s why they are run by executives instead of doctors and nurses.

                     And these type of decisions don't just mean they have fewer ventilators, They have less meds, less masks, less specialists, cheaper gowns, cheaper food, fewer nurses and so on.

                     So when a hospital is run on a shoestring as it were- with the smallest amount of  equipment and supplies and staff necessary for an average week, what happens when disaster or pandemics strike?

                     What happens is they run out- of ventilators and equipment and medications and doctors.  And decisions must be made such as who do we let die?  How much effort do we make?  Who gets the last ventilator?  Who doesn't get the medication?   How often does someone even bother to look in on a patient?

                    The elderly and the disabled are ALWAYS the most likely to lose in that dreadful situation.

                    But as long as there is money to be made, it's ok.   We'll thank them for their sacrifice.

                    THAT'S why I am terrified.

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. 

Just effing VOTE already.

         I wanted to make this a witty piece about Feisty Pants' future. I wanted to be funny and convince you to happily do your civic duty for my kid's sake. Then I wanted to grow fangs and howl at the moon because I don't know anyone with a disabled kid or any disabled American, really, who is not a little scared right now. Women feel demoralized and frustrated. Minorities are frightened. Immigrants are directly being targeted. The LBGTQ community is being treated like they should pretend they do not exist.  Meanwhile we have alleged leaders who intentionally lie and act as if it's immoral not to go along and believe them. Who openly use neo nazi lingo in public rallies.  Who equate obedience with morality.
         And we have a lot of otherwise good, decent people who don't want to see this because no human ever really wants to acknowledge the monster in our own midst.  It's like we are all collectively the mother in those old crime dramas.  "But your honor, my son is really just a good boy."  And this is all because, as Trae Crowder put it, "We fell asleep at the wheel."
         Agree with me? Then freaking vote.
         Disagree with me?  Still vote.
       
But agree or disagree with me, chances are today's vote will decide whether or not human beings with pre-existing conditions are protected or thrown to the wolves.  Whatever else you do today, for the love of all you hold good and holy, VOTE.

My kid's very life may just depend upon it.

The back to school crazies

                                       So I did not get anything posted last month.  I feel like somehow I let myself down.  (I have adhd so self discipline is a work in progress for me.)  In my defense, when it hasn't been crazy busy with Feisty Pants, it has been just plain crazy.   It is one of things that bothers me about this journey with her.  You never seem to get a chance to catch your breath and remember to enjoy the ride. It's never all beer and skittles with a special needs kid but it's also not the Bataan Death March.   Feisty Pants is back in school.  Her class is properly composed of mostly boys and her bestest girlfriend and her.   Boyfriend Pants is indeed in her class this year.  All is well in FeistyPanstadu, at least as far as Her Most Gracious Highness is concerned.

                                     She also only had one illness. (It took several doctor visits and two different antibiotics, but that simply is nothing for October)  We got her g-tube switched and it lasted a whole two weeks before it malfunctioned and turned into the Bellagio fountains and had to be replaced.  And I only have to had to call a drug manufacturer EVERY FRIGGING DAY, wasting hours of time, to try to figure out why no drugstore in my area can fill a simple prescription for a scopalomine patch.  (Usually a motion sickness drug, but in FP's case , it's an important medication to help stave off pneumonia)  I don't hear of any little old ladies on cruises going without, the FDA's website does not list a shortage, so why can't a disabled kid get some, hmmmmmm??  Funny, still no answers beyond a "We are aware and are working it" from the factory.   Why yes, I am the kind of mom who will hunt the factory's phone number and call them.   And then bitch on their facebook page.  Why do you ask?

                                     And it's not even that Betsy DeVos is a joke. (I say "joke" because it's the only four letter word I can use and not ban my mom from reading this. Feel free to insert your favorite word there. I know I am.)  The alleged Secretary of Education (I say alleged because I have yet to see her act like one) is ignoring anything pertaining to the disabled when she is not outright discriminating against them.  Filthy, rotten "joke." Seriously, she has, among other things, told the Dept of Education to IGNORE complaints if they are made by someone who has ever made a complaint before. Parents of special needs children tend to think and act like, well,  activists.  You simply have to be to get anything done.  Now, she has issued instructions saying we are to intentionally be ignored. Has the woman never read a book?  Specifically has she never read A Tale of Two Cities or Les Miserables?   Does she want a revolution?  Because this is how you get one.  

                                 Sigh, I'm whining and I know I shouldn't be.  Feisty Pants is doing well on the new antibiotic.  She has been named student of the month in her class for hard she works.  We have FINALLY gotten aquatherapy and massage therapy back and it's been WONDERFUL. (Hollalujah!) It's October (even if the weather doesn't realize it) and soon it will be Halloween.  (We LOOOOOVVVVEEEE Halloween. It's the only day of the year we seem to not be freaks. mwahahaha)  I am actually acutely aware of how grateful I should be right here, right now, in THIS moment. I truly believe that the Universe hands us lessons and circumstances for a reason.  So why can't I catch my breath and feel the gratitude I know is lurking beneath the surface?

                                You know, I recently read of something the article's writer entitled "school restraint syndrome".  It's when a kid spends too much effort and energy being good and sitting still for school that they then come home and totally act out.  I totally get that.  I, too, have only so much restraint and maturity to offer the world.  So I'm gonna label this "special needs mom restraint syndrome".   I have been spending all my grown up currency dealing with people who are semi polite but yet uncooperative  (look away NOW Mom) dicks. I only have so much currency left before I too act out.

                                    

No clever title here

           So, I have been writing this and rewriting this post for a week or so now.  A state agency has been doing what I consider to be some shady work (involving cutting back on social workers). I wanted to write some clever screw you post.  But I cannot quite get on paper the words and tone I wish to convey.  And, no, it's not because I simply devolve into swearing and banging my head off the keyboard. (What?!?  I swear it's not, honest.)  I have been worrying a lot about where we are heading as a nation lately. So let's get out a few facts first.   When any culture devolves into authoritarianism, several things always happen.   There is a cultural buzz all about law and order.  Political opponents are turned from rivals into enemies or criminals. (Chants of lock her up anyone?)   Any criticism is marked as a criminal and treasonous. ("Lying media" and "gotcha journalism" anyone?) Certain segments of society are singled out as "vermin" and "free loaders" and a criminal class.  (Can any of you tell me exactly what sort of crime an illegal alien has committed? Hint it's not a felony- it's more like a traffic infraction. And seeking asylum is not a crime at all.)  Crimes against this segment now marginalized now become frequent and then commonplace.

          AND THEN THEY GO AFTER THE PHYSICALLY VULNERABLE.  You know, like the elderly and the disabled.   It always happens.  DO NOT KID YOURSELF. Look at orphanages and nursing homes behind the iron curtain.  Read the reports of forced euthanasia and torture of the disabled in Nazi Germany. Hell, google Willowbrook or Pennhurst right here in the US.   Go ahead, I'll wait right here.  Then come back and read the next few paragraphs.  After you're done gargling holy water and giving your soul a bath. 

          It has not been very long - only in my lifetime has the treatment of the disabled by society begun to change.   My older sister had Down Syndrome and my older brother has spina bifida. My parents were originally turned down for adoption (I'm an adoptee) because they refused to put their children into an institution. They had to sue a state to get my sister an education.  It has only been in Feisty Pants' lifetime that she was not automatically doomed to live in poverty.   Her birth injury is an automatic pre-existing condition. It is only because of the Affordable Care Act that she has the opportunity to grow up and be a tax payer and get a real job like everybody else.  Otherwise she has to live under the poverty line in order to qualify for medicaid. 

           So you'll have to forgive me if I look upon ANY cutback with skepticism.  On any step backwards with horror.  It has been a long, dark slog through bureaucracy and intolerance and outright fear and bullying and hate to get this far.   Not even on just a governmental level.   It hasn't been too long since society itself expected the disabled to hide away as if they were somehow contagious and unclean.  The disabled are still often treated as expensive nuisances who just ought to be grateful for any pittance society deigns to throw their way.  If I had a dollar for every time someone (who usually was making a buck off my kid's disability) acted like I was just such a utter shocking bitch for demanding quality and service like Feisty Pants was a regular person, I would be having my secretary transcribe this whilst my servants fed us chocolate bonbons.  

        We are living on the precipice of tyranny.  We will not go quietly back into the dark ages and dungeons of disability rights.   In other words, do not expect us to be grateful for what we are paying dearly for.  Do not expect quiet obedience.  Do not expect us to not question your morals and motives. Do not expect us to not push back and push back hard on any perceived set back.   Disabled kids are notoriously stubborn.  The only thing more stubborn are their mothers.

            

    

Once More for the Cheap Seats in the Back

                               So, summer seems to be going pretty well. No major illnesses, although I suspect Feisty Pants is brewing another sinus infection.  It seems to alternate between raining and raining pollen here is the Southern Tier. (sigh)  Summer school is going REALLY well in FP's  not so humble opinion. Her summer class consists of BOYS, including Boyfriend Pants (!!!) and one other girl, whom Feisty Pants considers "a true friend" and henceforth to be known as BestFriend Pants.  Feisty Pants was happy to report this is the proper ratio for all classes.   This will probably be her fall class too. 

                             I am definitely glad school is humming along since society appears to goosestepping towards hell.  Seriously, what is with government trying to turn back the clock on pre-existing conditions?   For those who haven't thought this through allow me to explain why this an awful and awfully stupid idea. 

                              First of all, wtf is wrong with anyone who thinks ANYONE should not have decent health care. (Don't even spout that nonsense that we have the best medical care on the planet.   We are talking about ACCESS to it.  The tastiest gourmet meal does NOTHING for a starving person if they are not allowed to sit at the table and eat.)   We ALL deserve good health care. If you don't think so, you are evil or sick in the head. Either way some part of you needs healing and I hope you get it.   Pricing health care for anyone out of all true reach is just plain evil and we all know it. 

                              Secondly, do you even really understand what a pre-existing condition is?   We are not just talking about  a disability like Feisty Pants has.  The list is ridiculous.  Heart attacks, car accidents, RAPE, being above a certain age, having survived cancer, pregnancy, being FEMALE have all been on pre-existing condition lists before.  It's simply an excuse to raise rates to make OBSCENE amounts of profit.  It's legalized extortion.

                               Lastly, and here's the part I wish people would think about. Without the ban on pre-existing conditions, certain swaths of the country's population are doomed to poverty for life. For example, Feisty Pants is disabled through no fault of her own. (It's a frigging birth injury for goodness sakes) Without regular, expensive (in the US) healthcare she will DIE and die quickly- even her main FOOD is prescription only.  Without the ban on pre-existing conditions, she will NEVER be able to afford insurance on her own. That means she will have to have medicaid in order to live. That in turn means she will have to live under the poverty line. No career, no real gainful employment, no paying taxes.  No reason for the schools to educate her, for society include her, to not segregate her.

                            If you are ok with that, you are a Nazi and an asshole. Please get your soul checked.  If your NOT ok with that, please get off your ass and vote. Either way, the life you change will be my kid's.

The Dark Ages

                So, here we are in the dark ages.  Literally and figuratively.  Literally because Nazi ideology and a love affair with authoritarianism seems to be the public zeitgeist right now.   (Don't believe me? We are stealing the children of asylum seekers and locking them cages and calling them all criminals.  How on earth is that NOT Nazi bullshit?   That's like your neighbor banging on your door for help because of an emergency and our answer is to call them a criminal and kidnap their kids.  The detention centers even have "rules" about not even hugging them. If you are not appalled and ashamed then get your damn armband and goosestep proudly.)  Figuratively because Feisty Pants is on her first break of the summer. (She gets two- one for three weeks and one for two weeks) which means no therapy, no class, no Boyfriend Pants. Read that as one unfulfilled, grumpy, sweaty Feisty Pants who is bored stiff and craving brain stim like you wouldn't believe.  Ain't no party like a bored Feisty Pants party because a bored Feisty Pants does not stop. EVER. Or sleep. Or quit bitching because we are boring.   Her tv died last month. Thank the stars above I found a great sale on Amazon and got the new one in time for the break or she would've rolled away from home. Thank them even more for movies because she's fifteen and movies are the bomb diggity right now.   Steven Spielberg is worth every penny he ever made right now. 

             But fortunately, school starts the summer session next week. Feisty Pants is pretty sure Boyfriend Pants is in her summer class this year. She has her summer clothes, she has her new wheelchair (which would just be perfect if her uptight, stick in the mud mother relents and lets her put a Hello Kitty sticker with Hello Kitty wearing an anarchy shirt and giving everybody the middle finger on it) She has her new dye job - Mermaid! (all purples and teals and blue). She found out a new insurance may kick for her and allow her to have her old massage therapist back.  (OMG MIRACLES do occur!)  It may even stop being 100 degrees on my back porch every afternoon by then. (I wish I were exaggerating.)   She just might survive the horrible, terrible, mind numbing ennui of a barbecue with the family (horrors) with s'mores and sparklers. (Totally lame- honestly how is this not child abuse?!?)  The terror of a graduation party for (yawn) somebody else.  (At least there will be music and cake and relatives who fuss over her...) With a little bit of fortitude and pluck, she may just survive the the ordeal of school break. If not, she  is pretty sure she can figure out how feed us old farts to dinosaurs.

I'm Over(thinking) it

                If you are given a feisty one by the Universe to raise, you are gonna have to get used to constantly second guessing yourself.  Over weird sh*t too. There are decisions I have made in a split second and never regretted.  (Trach? No effing thank you    Shriner's? Yes, please.)  There are decisions I regret. (Why one earth did I wait until she was three to take her to CHOP?  Why, oh why, did it take me so long to find the right school placement for her?)  But the ones that make me crazy are the smaller ones with no clear cut right or wrong.  When I don't have the answer, it drives me nuts. And I do not know any parent of a special needs kid who doesn't have this happen.

               For example, Feisty Pants had a weird day on Friday.  She was drowsy all day. Her nurse texted me all day from school because she was worried.  The teacher and aide at school were concerned.  Her sat rates were good. No serious temp.. No obvious symptoms except for this tiredness. She fell asleep at five thirty in the afternoon. Then slept until seven thirty the next morning.  I thought she was getting sick perhaps and expected to get up Saturday morning and have to try to find a doctor who was in. I came downstairs that morning literally googling walk in pediatrics on my phone.   Only to find Feisty Pants bright eyed and bushy tailed like nothing ever happened.

               So what was it?  A virus?  Feisty Pants is pretty tough and has had a nissen procedure (a surgical procedure for GERD that makes it hard for her to throw up).  So was it a minor tummy bug?  Hormones? Her cycle is due so maybeeeeeee.  She is on a new seizure med that she only takes for one week out of month.  Could it have been that?  Hell, was it allergies?  The pollen levels are 1800% higher this year. Migraine? Her sister and father get them but she is so damn tough would she realize it wasn't a usual headache? (Don't make judgy comments either- she already lives with chronic pain and yet rarely complains.  I'm not making light of migraine pain but more trying to explain exactly how effing tough this kid is.) Or was it simply the ennui of being fifteen and bored with us all?  

               To be honest- in the end, does it matter? She woke up right as rain and raring to go.  Am I just borrowing trouble to worry over a minor bump in the road? Am I making myself crazy worrying over an illness that's not going to happen?  These are things that I will drive myself nuts over.  Cause, obviously I don't have enough things to worry about that I need to go borrow a cup of anxiety.

                Meanwhile, Feisty Pants is binging superhero movies and yelling "hells yeah!" when Hippie Pants told me I was boring.  Go figure.

Mother's Day 2018

     It's been a crazy, busy month or so. I wanted to sit down and write a funny piece of toddlers, and tantrums, and busyness.  But every time I started, I couldn't get it going. So I thought about what I really wanted to say, right now, right here. I guess I just want to say Happy Mother's Day and thank you.

To every mom friend who nurtures other people's children they don't have to, thank you and Happy Mother's Day.

To every NICU mom just starting this journey , feeling overwhelmed and scared, you got this, Happy Mother's Day.

To every social worker, nurse, teacher and caregiver who does half our jobs for us, thank you and Happy Mother's Day.

To every grieving mom who had to give a child back to the Universe,  you are still a mom, that cannot be taken, Happy Mother's Day.

To every mom who takes in another mom's child, you make such a difference in the world, Happy Mother's Day.

To every special needs kid's mom who worries they will not be enough, you are, Happy Mother's Day.

To every mom whose kid is in THAT stage, relax, it gets better, Happy Mother's Day.

To every mom watching their kid leave the nest, you did a good job, you'll see, Happy Mother's Day.

To every mom who worries that their difference will make them not enough for their kid, trust me, you're enough, Happy Mother's Day.

To every other mom on a journey like mine, who stopped and paused to give me a moment of time or word of advice, thank you so much for your loving kindness, and Happy Mother's Day.

Happy Mother's Day.

Hippity Hoppity

                 So it's been a long few weeks.  Goo had four hernias that needed repair and had to have surgery.   Not that that should be a huge deal but heck just a simple doctor's appointment throws a huge monkey wrench into our day to day routine.  Having Goo out of commission for a week or two is more like a meteor strike.  First, there was the issue of Goo being in pain and unable to do as much with Feisty Pants. Then finding someone to help me at night with Feisty Pants. (Someone has to stay awake with her at all times- suctioning, meds, round the clock feedings, etc.) Hippie Pants is volunteering for sainthood on the installment plan.  Two nights of taking care care of her sister and then going home to try nap around her two preschooler's schedules.  All while having a nasty case of pleurisy no less. Someone must have raised that one ok. 

                 But now, at least Goo is home and slowly healing. Although, a big bag of di@#s to the surgeon who thinks motrin is an acceptable form of pain control for a six foot three man with four hernia repairs and at least that many hematomas from the surgery.   I totally get we have an opioid epidemic in this country, but maybe that means the medical profession needs to get off it's keister and learn new pain control methods instead of being a two trick pony, eh?  "Nothing or heroin" seems to not be working well.  Maybe I'm a tad demanding but you all get paid a lot of money, earn it.  Just saying.

                 Feisty Pants seems to be doing ok for the annual sinus-y, snotty season of snow melting and mildew. She has her monthly sinus infection, but it was caught quickly (Thanks Hot Pants!) and so far, no hospital stay or even a week at home on oxygen. Just minor crankiness and a second antibiotic.   She also got her a new totally adorbs haircut and rainbow dye job on her birthday, so she is the queen of the universe, as is her due. 

                We also seemed to have made it through Easter with only a few mishaps.  Honey Badger and I still look a little tie dyed from coloring eggs.  Honey Badger's brother Dinky Pants (he's gonna just LOVE that name as he gets older) had some interesting sound effects as he ate his bunny ears first.  ("Can you hear me Bunny? NO you can't! You have no ears!")  We ALMOST have the little ones convinced broccoli gives your Easter wishes, but then all they wished for was more chocolate so there's that.  Ah well whatcha gonna do?  Except suck back some more bunny ears.  In Feisty Pants Land no can hear you bitch anyway. 

               Hope your holiday finds you healthy, happy, and overstuffed with good chocolate.

                                                  

It's a New Month, Same as the Old Month

      So, it's new month.  Time for a new rant.   Or more to the point, a new take on an old rant. I am FRIGGING still trying to get Feisty Pants a new wheelchair.   This is now officially bullshit. It's been since July of last year. I have LITERALLY made a human being in that exact time span.   TWICE.   It's driving me crazy.  Allow me to explain.

       Last summer, Feisty Pants became Robokid and had her spine rebuilt.  (Seriously, total spinal fusion -neck to pelvis.) It was long and necessary and I wrote about it ad nauseum.  Ever since then. JULY. Freaking July. Her wheelchair has not worked for her since. Her surgeon wrote orders for a new one.  Which her insurance WILL pay for. BUT. Freaking but.   Insurance regulations state that I have to have a VENDOR order it.   I cannot find a vendor to put the order in to her insurance company.   I fired the first vendor over it. I have now been waiting since OCTOBER for the second.  That one has not submitted either. This makes me crazy. It's, frankly, medical child abuse. The surgeon tells me that it is illegal for someone to ignore a written doctor's order.  (I wish I knew who turn them into. I would do so in a heartbeat.)  The insurance says they cannot do anything until any claim is submitted.  And the vendors ignore me.  Or claim they need some paperwork I know they already have. (Some of it I have sent three times)

        If these companies do not want my business, why don't they just refuse it?   Say no. I will move along to someone who does want the money. Trust me, I sure as hell do want/need them to do me any favors. And taking the job without finishing it makes them no money and just wastes both our time.   They seem to have no axe to grind.

       So, what the hell gives?  Why on earth do this?   Why this passive aggressive intentional withholding of much needed equipment for my kid???   The point of insurance regulations about vendors is SUPPOSEDLY so the companies that make the equipment cannot sell to patients who don't really need the equipment. I no longer believe it. I suspect it's this way to intentionally deprive patients of equipment on the part of the insurance companies. I suspect collusion between the insurance and the vendors. The vendors know-  OR ARE TOLD- to hold off and delay.  Those who don't find their bids get denied and learn to "play the game". Otherwise, this makes no sense.  There would be no reason to make customers unhappy. 

         And don't even get me started on the whole abusive, gaslighting nonsense about how customers get "demanding".  I truly would love to be a live and let live kinda mom.   I don't care if you have more or do more or status or any of those things.   But when I don't demand and yell, you don't get off your ass and DO. YOUR. JOB. and then MY. KID. SUFFERS.    And then I am angry that I have to yell and demand.  So, do me solid.  Take the money. Get off your freaking butt and DO. YOUR. JOB.  It is the only way I am going away.  If I have to be stressed and miserable, I'm only gonna take you with me.  Just saying.

Time Out Redux

            So we had a snow day here yesterday.  We were supposed to be Syracuse having botox injections but the Universe thought better of that.   It gave us a much nicer time out than the last one in the form of about eight inches of lovely, lovely, motherflipping lovely snow.  Considering that the hospitals in my neck of the woods are full of flu and Feisty Pants hates the whole idea anyway, I am not too disappointed. 

            I woke to sound of Feisty Pants laughing and realizing she was not going for any stupid procedure. So I threw a bunch of veggies and chicken in the crockpot and called it soup.  Goo got a much needed seven hours of sleep (In a row!) and woke to find our sidewalk magically clear. (I have the most wonderful neighbors on the planet.) It snowed probably about eightish inches. Enough to just royally cheer me up  and make the world beautiful. (insert contented sigh here)  Now THIS is what I call a time out.

            In case you are also having a lovely time out too, Feisty Pants and I humbly offer the following suggestions to while away a snowy day.

!) Bored? Got CP or other disability that makes sledding not always doable?  No problem- teach yourself to work the tv remote with your toes and randomly turn OFF the cable box when your Goo is not looking. This is good for at least an hour of giggles while he tries to trouble shoot non-existent cable problems.

2) When that ceases to amuse you,complain bitterly of being cold and insist on using Goo's heated throw.  Then in 60 seconds flat, complain of the heat and insist on its removal. When Goo goes to put it away yell that you're cold. Keep this up until Goo declares defeat and then tell him you never wanted it in the first place. While laughing.

3) Ask your sister to come over and paint your toes.   Then refuse to decide what color you want.  Then, just when she is about to appear, change your mind and tell her not to come over.  Tell her it's not because you cannot make up your mind, but because she is smelly.

4) Just when you have charmed everyone with your oh so mischievous ways, cuddle up beside them, look fetchingly adorable and fall asleep.    

             And there you have it.   How to entertain yourself when you're bored and need to start some s#*t, umm err, entertain yourself on a snowy day.

PS- If that doesn't do it for you, here's a quick recipe for snow ice cream. (the breakfast of snowy champions everywhere)

You will need:

1 can sweetened condensed milk

1 1/2 tsp vanilla

Approx. one gallon fresh clean snow

Mix condensed milk and vanilla.  Stir in snow until you hit the desired consistency

Enjoy!.