For Rhonda, wherever we may find you

               So, we have had a kind of sad day today.  Feisty Pants has lost one of her therapists today. Well, not lost, lost.  The woman has not died, for goodness sakes. Although, it kinda feels that way. The therapist is moving onto other things and other clients farther away from here. Sigh.  Change is hard.  Seeing something wonderful end is really hard.  Seeing something wonderful for your disabled child end is really, really frigging hard.  But in the spirit of "don't cry because its over, smile because it happened", I thought I would send this shout out of gratitude for all the therapists and health care providers who have made such an impact on Feisty Pants' life.   (And a special thanks for Simon and Garfunkel for giving me a great title to paraphrase.)

               So, dear Rhonda (and all the other therapists and teachers and nurses and doctors we have lost along the way)  I want to thank you.  For a lot of things. For taking good care of my kid.  For caring about her as more than just a patient. For seeing the child within- and for seeing her as intelligent and caring and full of things to offer the world.   For offering me hope when, even if I never said it, it was sometimes scarce along this journey. For making her feel as if you were truly and wholly on her side.  For occasionally kicking her butt into gear when she was acting like a stubborn kid.  (What?!?!? Feisty pants stubborn?!?!  Who would've thunk  it?)  And, thank you, especially Rhonda for being an amazing calming presence in her life when she sorely needed it.  You were the first person outside the family that she ever said "I love you" to - and that instantly made you feel like family forever.

              Feisty Pants, like any kid, is a lot of work.  But Feisty Pants, unlike many kids, is a heck of a lot of hard physical labor. Every single day she has made it through, someone helped along the way.  Every single night that she drifts peacefully (or not so peacefully) off to sleep, someone worked to help make possible. Any damn thing she does for herself, someone worked hard to help her discover how.

              So, dear Rhonda, and all the therapists and nurses and doctors and teachers we have parted ways with along the way, we wish you well. We wish you peace and productivity and great pay and benefits and love and happiness and all that good stuff.  And if life ever brings back our way, we will welcome you with open arms and hearts greedy for therapy.  You will know where we are, just listen for Feisty Pants' laughter and look for the light in her eyes.  The light that is there because of you.     

REALLY?!? - an open letter to New York State

               So, today I got a phone call from Feisty Pants' pediatrician's office.  It seems they cannot get her insurance (which is NYSMA) to pay for her formula.  I fully admit, it is an expensive formula, but pb & j sandwiches do not fit into a 14 French gastrostomy tube. Feisty Pants has been tube fed her entire life.  First by an NG tube (that's the one that goes down your nose) then by a peg tube (the kind that goes directly into your stomach via an incision in your abdomen- like a second belly button).  She cannot swallow properly due to her CP.  The insurance has paid for her formula up to now. But now suddenly, New York does not see fit to  -and I am quoting here- "pay for more than 570 calories of formula a day".  Feisty Pants is twelve years old.  Her doctor wants her to have and she definitely needs 1950 calories per day.   WHAT YOU ARE PROPOSING NEW YORK IS A DEATH SENTENCE VIA STARVATION FOR MY TWELVE YEAR OLD LITTLE GIRL.  

               I certainly hope this a mistake on your part. I certainly hope that you simply have confused formula for enteral nutrition with BABY formula.  That you merely have not instructed your computer system to recognize the difference, and that come next week, a human being with sentience and discernment will be able to manually override the system and smooth this all out.   Otherwise, very soon I will have to make some hard choices.  Like, admit my daughter to a hospital where instead of  her insurance having to pay for an admittedly expensive formula, you will have to pay for a MUCH  MORE EXPENSIVE hospital stay AND the aforementioned expensive formula.  Or drag my oh so adorable, beautiful, vulnerable looking child in her wheelchair onto the local news where no matter how cute you think you are, you will only come across as the Scrooge who wants kill a disabled child through starvation. (And by the way, isn't that murder in the second degree in our fine state? I believe the wording is "depraved indifference to human life".) Never doubt that I can and will use her cuteness as a weapon, especially in such a worthy cause.

             Make no mistake, I am not being overly dramatic.  This is her basic nutrition. It is literally life or death here.  And you are doing this to everyone I know right now. You are being penny wise and pound foolish by trying to micromanage expenses that will end up costing you more in the long run.  A healthy disabled child is MUCH less expensive than a sick disabled child. I know you think you are being fiscally responsible with this sudden micromanaging over every expense spent on the disabled in New York State.  But you are not.   You affecting  the very lives of the most vulnerable members of your state. They are not getting the services we all pay for. And then that will assuredly cost all of us more in added hospital stays and added prescriptions and added therapies needed to repair the damage you are causing by your actions. Actions to the very people you are supposed to be serving.  For that's what government is- it is the management of services for all of us.  Otherwise- what purpose is your very existence serving at all?

ABLE Accounts

                One of things that bugs the living hell outta me is the usually unrecognized fact that many disabled are oftentimes simply expected into poverty. Our schools do not usually properly educate the disabled.  Colleges rarely recruit them. Insurance companies damn well allow them to be forced into poverty to further their own profits.  Same with many sheltered workshops. Nursing Homes and group homes are often the only available housing for people who need long term care. It's an infuriating passive bigotry.  The idea is that somehow the disabled are just "poor dears" who would never be able to function in the world independently so why should we all have to deal with them, or acknowledge them, or, shudders, worst of all, pay them a living wage or even be educated in the first place. It makes me grow fangs and start howling at the moon.

                 Thankfully, that is slowly changing.  (way too slowly for my druthers...)   The Affordable Care Act for all its faults, got rid of pre-existing conditions, which is a godsend for feisty ones like my kid.  (Seriously, she would have simply been doomed to poverty or winning the lottery- nothing in between- without that because she was automatically ineligible for most health insurance.)  In home care is becoming more doable as people demand it more.  Sheltered workshops cannot automatically pay slave level wages.  And now we have ABLE accounts. 

                 Able Accounts are saving accounts set up to help people with disabilities save for essential expenses.  That means things such housing, in home care, medical and dental care, community supports, medical equipment, housing modifications, transportation and the like.  This is a big deal because until now people who were on SSI or SSD or had certain public health coverage such as medicaid or medicare had a very small limit ($2000) that could saved in any type of bank account.  Which meant they could not save for things like a stair glide (way more than $2000) or a modified van (also way more than $2000 ) or tuition (don't make me laugh).   Things that would allow them to stay at home, get to work, or get an education and a good job. You know, be a normal grown up and pay taxes and the like.   Able accounts are specially held for these type of expenses (no hookers and blow allowed, thank you) and anyone can add to it (mom, dad, great uncle moneybags, whoever) . They are not considered a resource for government programs (meaning they cannot be counted against the person who has one) and are tax deferred.  The exact rules and dates of when they can be started vary from state to state. (In New York, it was signed into law by Governor Cuomo on 12/22/15 and takes effect 180 days from that date). If you are interested, simply google  "ABLE account + your state" for all the pertinent information.

Can I exhale yet? Just asking...

          Well now, it has been about a century since I was able to post last. Ok. Maybe not exactly a century but I can say it was last year. (See what I did there? Snort.) It's just that every time I have tried to write a post in the last three weeks, some weird and/or messy time eating catastrophe has happened. EVERY. SINGLE. TIME.

          First, there was crazy 6 am Emergency Room visit. The Friday before Christmas, at 6 am, Goo yelled up that her sat rates were fluctuating wildly. ( 84% one mintue, 94% the next - for the uninitiated, that's a really big deal) So we schlepped off to the hospital.  To find out that Feisty Pants had a bad cold. Don't get me wrong, I would rather deal with a million colds than one pneumonia, but it took all day.  On the day I needed to grocery shop, finish presents, post, and pack to leave for my folks.  Which meant that we had to do all that on the next day, which meant THAT day's work got pushed back etc etc etc...

            Then there was day of botox shots, or as FP puts it, the day of torturing her for no damn good reason.  Forget that she only got about 10 needle sticks to her face as opposed to thirty or so to her entire body she used to get.  We are still frigging evil and ruined Christmas and her birthday and the rest of her life and she made sure we knew it by yelling for alllllllll day. We are just lying about it being for her own good.  That's what all evil tyrants say.

           Then we went to my folks for the holiday and, since they live in Brigadoon, the interwebs is spotty through that time barrier so no posting there.  I thought I could fit a post in the day we got back, but unpacking took longer than I thought and in the midst of it a starving little kitten LITERALLY wandered in our back door loudly demanding love, food, and squeees and sending the rug rats into a commotion and what can you do but name the damn thing Mistletoe and make more room at the inn?

      The entire week after Christmas was out because Hippie Pants, who really needs cable tv, decided that just might be good week to have her second kid. (The week before was already taken due to Christmas and a relative having surgery to have an eye removed.) So we were a wee bit busy there.

       So, finally, on this last Sunday. When everybody was home, the bags were finally unpacked, the house was finally clean(ish), I thought I could sit down and write a post.  Only, at that very moment, to have a frigging SUV almost wreck into my house. Seriously.  It hit ice, slid into a tree right smack in front of my house and ended up with its smashed up nose on the ramp to our front porch. 

     So, it is safe now?  Can I come out from under the bed? If I manage to break the spell and get this posted. I want chocolates thrown at me and a parade.  And how were your holidays?