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.