French Fries

          Soooo, here I sit in one of the Ronald  MacDonald Houses of Philadelphia.  There are four in the greater Philly area.  We have stayed in three so far.   They are truly a hallmark of civilized society.  Being sent to a far away hospital is never fun, even when it's merely for testing like this. It is an amazing comfort to find a real bed in a quiet, safe place after a chaotic, stress filled hospital day. Every time I think Micky D's  is an awful fat filled institution, I remember the RM Houses and stick a damn french fry in my mouth and shut my fry hole. Anytime you want to feel truly noble, donate your time or even some money to a such a place. Even if you never hear it,  I guarantee some tired, stressed out family will be singing your praises.

          Goo and I brought Feisty Pants down to St Christopher's to see a pulmonologist and get pulmonary clearance for her upcoming scoliosis surgery. (We have several clearance hurdles to cross.) Getting said clearance involves getting a sleep study done.  We have been down this road three times before.  It's a twelve hour test. We are lucky if we make to hour eight because Feisty Pants is called Feisty Pants for a reason. She is very. well, feisty .  She usually spends her time during a sleep study by continually ripping off all  the leads and throwing them at us.  While proclaiming to all and sundry how much she disapproves of sleep studies.   I did the last three.  This time it's Goo's turn.  (They usually only let one parent stay for the test.)  So here I sit by myself in RMH.  It's weird to be myself, ever.   Goo suspects I am partying it up, reveling in the aloneness.  In truth, I find myself  at a loose end and bored with my own company.  If I were at home, I could clean and finish my gazillion emails, or at least play with the dog and pretend to clean, but here I guess I will write a few posts and, I hope, catch up on my sleep. But the enforced idleness makes me a bit anxious.  In truth, I spend so much time being Feisty Pants' mom first and foremost, that I don't really know how to deal with myself when I am not.

Sent via the Samsung GALAXY S® 5, an AT&T 4G LTE smartphone

W. T. F.

                    I wanted to make this post about the loveliness of November.  I even had it half written. I wrote about how the end of daylight savings makes me happy.  I wrote about how wet, windy, dismal weather is one of my happy places.  I wrote about how November is one the Universe's grand in between times that gives solace and refreshes the spirit of a tired, busy soul.  I wanted to wax rhapsodic about how the closing in of cold weather makes us all appreciate our loved ones more and naturally draws us all closer together.   But I can't, because somehow there is a CANCER IN THE AMERICAN SOUL AND WTF IS WRONG WITH US?!?!? 

                      Why the hell did we go and elect Mussolini 2.0?!?    This isn't a conservative/liberal argument.   There were plenty of conservatives to pick from.  We could have gone with any of them.   They had experience and education and all the hard ass bonafides (defund Planned Parenthood, no to the Dream act, lower taxes, etc. ) that any right wing pundit could love.   This isn't an antiestablishment argument.   Bernie Sanders was right there in the wings allowing any person with a populist bent to Feel the Bern and stick to the man- with grace and dignity and class.   Why the hell did we go for the a-hole who is a bully and anti-female, anti-immigrant, classist, and racist, and frankly, tacky besides?  At best, he is a bullying narcissist.   Quite possibly he is in the pay of foreign goverments. Quite definitely he is a thin skinned con artist.

                       And why, dear reader, you may ask am I harping on this in a blog about raising a disabled child??  Because of this- my child is among the most vulnerable in society.   People think that the disabled are not preyed upon by so called good people, but they are . EVERY DAY.  It happens when some jerk acts like my kid doesn't need the accommodations that he refers to as"special privileges".  It happens when some supposedly respectable citizen complains that they shouldn't have to pay taxes to "take care of her" as if they don't benefit from taxes I pay every day.   It happens when some bureaucrat tells me they cannot pay for necessary medications or doctors because there is not enough money in the budget meanwhile cutting taxes AGAIN for some wealthy a-hole.  

                       Most of all, it happens when the evil starts creeping in, slowly at first, when those in charge start muttering about the "takers" in society.   When supposedly decent human beings talk about "those people who just aren't like us".  When people continually confuse obedience with morals or ethics.  Or confuse flag waving with real honest patriotism.    If it is not stopped, it ends with discrimination becoming legal.  With those in need first starved financially of needed services.  Then just starved period.  All while supposedly "good citizens" turn a blind eye and a cold heart.

                        It may not come to this.  I hope it doesn't.  But it so easily could.  I am scared.  I am very angry.  And make no mistake.  To quote the Texas republican, "There is no honor in being a good Nazi." I am scared that not only is my child's way of life at stake. I am scared her very life could be at stake.   This is my CHILD. I will go down swinging.  The zombies are rising. I am tripping everybody.