Sunday, May 13, 2018

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.

Sunday, April 1, 2018

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.

Tuesday, March 6, 2018

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.

Thursday, February 8, 2018

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

Monday, January 29, 2018

Time Out

                      So it has been a gazillion years since I posted, or about a month give or take.  I wasn't pouting about the universe this time. Honest. (What?!? I wasn't. You don't know. Shut up.)  Instead the Universe decided I wasn't behaving very well and gave me a time out.  A time out in the shape of a small arterial tear and a five day hospital stay. Would have been a two day stay but of course it had to happen over a holiday weekend so it took like, omg, FOREVER to get a few tests done and finally get sent home.   And get a million lectures on stress and then told not to do yoga for a month.  Cause the Universe REALLY likes irony. sigh.  Which left totally me behind on all the elephant poo cleaning duties that running the circus here seems to entail and I am only catching up with myself.  At least Feisty Pants told me she felt bad for me after she was done laughing and pointing at me in the hospital gown and iv.
                    Well, whatcha gonna do?  At least I think I have a few ideas for posts.  First up, what the hell is wrong with hospitals' attitudes towards adults and sleep?!? I mean c'mon guys.  You KNOW -because you've done the damn studies, how important sleep is to healing and yet you run adult wards like fraternities. I had three different roommates- every single one was older (read that as retired and seeming to not care about sleep and hard of hearing) and watched serial killer dramas all effing night long.  I have a fourteen year old disabled daughter (read that as very vulnerable). I don't relish listening to various teen girls being kidnapped, chained up, and begging/screaming until rescued by the protagonist for hours at a time.  I averaged two hours sleep a night.   And then some medico would come in and give me a lecture on burn out and stress.  REALLY?   Back when dinosaurs roamed the earth and I was a teen, I had a mohawk and a rebellious love for British punk and surf punk.  Next hospital stay that keeps me awake to the sound of some poor teen actress begging for help is gonna end in Johnny Rotten screaming about anarchy in the Uk or Jello Biafra telling us what he is too drunk to do. I might even get bored and break out some Rammstein.  If I ain't sleeping, we WILL be having a mosh pit by the nurses station.   Don't you dare say an effing word, because the one time I asked for the noise level to be lowered (the tv was on FULL volume and the patient was snoring) the nurse said she was uncomfortable doing so.   So obviously sleep is NOT a priority in your establishment.  If I gotta stay up, I am gonna enjoy myself.  You don't want to stress me out do you?
                    Anywhooo, I have been home long enough to finally catch up with myself. Just in time for ice dams on my roof to cause all my gutters to fall off, and just in time for the car to need inspecting.  Just in time for a trip to Philly to follow up with FP's orthopedic surgeon.  Just in time for the next procedure Feisty Pants does not want to have. (Botox for spasticity)  Just in time for a dance we are not allowed to take Feisty Pants to. ("NO NO NO, you 'barassing!") In other words, I am finally home where I can be comfortable and happy and have the life I damn well chose (you know, the stressful part) as opposed to being bored, cranky, tired, and tortuously sleep deprived (the "rest" they thought I needed)  Spider Robinson was right. God is an iron.

Friday, December 8, 2017

WTF is Wrong with Us?

                  This piece has taken me forever to write.  I am so angry and frightened for my kid. Not what I wanted to be doing at Christmas time.  I wanted to write a funny piece about getting ready Christmas.  I have totally traumatized Hippie Pants' two year old, Honey Badger, with a phone call to Santa feature on my echo which was hysterical even if her mother did not think so. (Hippie Pants lacks a certain kind of sense of humor.)   I thought about researching another "what on earth makes a good gift for a disabled teen?!?" article. I was gonna title it Not Another Effing Teddy Bear (hint- if they're verbal get them an echo dot from Amazon, less than 30 bucks and opens up the world to them).  BUT JESUS, MARY, AND JOSEPH, WHAT HAS GONE WRONG WITH EVERYONE?!?!
                    Does everyone realize exactly what a travesty and horror this latest outrage from Washington is?  I get we are exhausted and practically numb.  That is, in part, how dictators operate.   (Hint- they are exactly like cult leaders or abusive spouses- they all work from the same psychological book of bully tricks.) But two things coming down the pike should scare the shit out of everyone.  The first, this monstrous tax bill. Congress is just not setting up a way to completely reward the rich. They are setting up an excuse to gut social security, medicare, and medicaid.  The elderly and disabled will be the first to take the hit.  You worry about your elderly parents or grandparents now?  Imagine what it will be like when they are in danger of freezing to death or starving to death.   Or cannot afford their  medications at all. Don't even get me started on what this could do to my kid. My daughter has to be tube fed a specialized formula that can easily cost upwards of 30 THOUSAND dollars per year.  Or starve to death with in about two weeks.  While I watch. She is on, right now, 15 medications. Wanna know how long she could last with out them?  Or exactly how much pain and suffering and torment she would go through until she managed to starve to death? Or die of seizures? Or aspiration pnuemonia?  Because that is without a doubt, her future without medicaid.  
                      And this is totally acceptable to representatives in Congress because the GOP has sold it soul to the libertarian wing of their Party.  You know, those morons who love talk about starving as "freedom" and adore Ayn Rand. (For a really interesting read on Rand, please google "Ayn Rand and satanism"  Those two things have a LOT in common.) Or perhaps just google the treatment of the disabled in institutions in America.  If that does not change your mind about insurance paying for community services, then your soul is damaged and you need more help than I can provide. (Perhaps a priest and a lot of holy water would help.)
                      The second thing we should be umm er, concerned about is the idea floating around DC started by Erik Prince, the founder of Blackwater and brother of Education Secretary Betsy DeVos.  Mr. Prince has proposed a private spy network.  Let that sink in. The brother of one of our Cabinet members has suggested starting a SECRET POLICE.

                      In this season of holiday after holiday for religion after religion that is meant to be about bringing light and hope and love to the world, we seem to have all lost our damn minds and are in danger of losing what is left of the American soul.  How much further down this awful rabbit hole do we need to go before we find our humanity again?