Tuesday, October 11, 2011

The Omitted Lines

I haven’t been avoiding my blog, in fact there is plenty of information I should have been documenting in regards to the girls here lately.  If it hasn’t been lost in that devious never-never land, eventually it will turn up.  I’m pretty sure my mind is stuck somewhere I shouldn’t be blogging about, presently. 
Aliza is growing up; sophisticated and mind staggering continue to be her standard.  The kid has a vocabulary that would blow you away along with a nice gift for contextually using it…in the best places, in front of the best people, at the finest times.  I often say, “Yes, she is only 2 and her dad or grandma must have taught her that”.  We had her first preschool field trip last week to the pumpkin patch, it was amusing!

She has been exploring the dreaded curiosity of Ava’s health struggles.  I’m pretty sure she gets it, a lot more of it than I imagined she would at this age.  Perhaps all of it, I see her fears and anxiety becoming rather parallel with mine, about things that frankly just are not pretty or typical toddler talk.  I don’t have to tell her how bad it is, she knows.  I also can’t tell her it will be okay, it might not.  Honestly, many of the questions she asks me, I ask others too.  I really have no clue what I should be doing nor any spare time to think it over.  Crapshoot#112

September was an interesting month.  Ava had her 6th birthday, had some amazing progress with her methyl b-12 injections (but some questions about urine issues has put this on hold for a few days), and lost out on her epileptologist appointment that I had my hopes entirely too high for.  Some things are going fabulously; she has proved to be teachable to all the newcomers but still she is struggling daily with her epilepsy.  I know she is probably “under-medicated” and I am really dreading the upcoming process of figuring out exactly what her vEEG looks like, coming to terms with said information and making decisions about where we go.  It's messy but necessary.

So many things need addressed, sooner rather than later, and I am more overwhelmed with the situation than I have ever been.  Short list of questions includes all ESES issues, kidney function, heart, potential acidity that could be causing tongue/urine problems, sleep, weight/nutrition, and benzodiazepine withdrawal syndrome.  Oh, did I say GI issues to help with stomach pain, dehydration and loss of swallow when she is having a bad neurological (motor planning) day?  Really, I need to get back to a good pediatrician that can mull this over; another blog for another time.

And what do I struggle most with, currently?  Feeling helpless is never fun and more familiar than I’d like.  Feeling like I am a soldier would be much more welcomed if I was reaping the benefits and respect of such a position.  After all, at least there is retirement, medals of honor and the hope that you can someday go home.  Honestly, all the first world bullshit I still deal with and fret about daily is usually my “straw that broke the camel’s back”.

Ahhhh, yes…just like you I have everyday responsibilities that include full time nursing  job, accounting business, house cleaner, cook, bus driver, shopper, and Queen Shit Shovel’r to name a few.  And I still take the time to try and be a good citizen of the world, despite all my daily differences and I find myself trying to shake the disgust of our society of privileged people whom have become so entitled to their lifestyle, they have stopped viewing themselves as part of a community.  They have forgotten it takes a village to keep their privileges intact and they ostracize folks whom need a little more support from that community as 'lazy or unworthy of help'.  My family is a minority and we struggle daily; I understand what it is like to want to punch you jack-balls in the face.

Eat a book instead of McDonald’s.  Learn at least as much about your government as all the folks that pass the citizenship tests have.  VOLUNTEER; get outside your comfort zone while doing so and I bet you will learn more in a few hours than you learned last year.  For gawd's sake do something other than bitch about things; especially those you are completely fucking oblivious to. It makes the rest of us look insensitive, ignorant, the list goes on and on.

Hope is a delicate balance and I’ve never been a self-proclaimed acrobat.


1 comment:

Summer said...

Thank you you are Awesome Taz!! You encourage me to be a better person and because of you I spend pretty much all of my free time volunteering! Thank you!!