17 days...

How can so much time go by... and yet while everything has changed it seems as if nothing has...
As if it's just a really long torturous dream... with a sprinkle of reality so you know you haven't completely and utterly lost your mind.

I read through the whole concept of stages of grief... perhaps one can't grieve for so much all at one time so denial sounds like a good town to camp in a while...

So much to say... express... or just sit and let it all sink in and go/do what it needs to elsewhere...

I'm astonished at the cycles my mind can go through in a day now... wish I could just *not* think for a while...

So blessed by those around me that the thought of that sets me off on a whole other level of emotions as well...

Bear with me... as I know "normal" will never reside here again... that's been long gone... but just looking for that calm, and ...  well in search of Me.. the who I am going to be now...  how do I pick myself up and move on, forward after this one.

Happy New Year :) (I know you think I'm late...)

I think a New Year can, and should begin at any time we choose, I always did because as a whole I think so many of us get all swept up in the New Year/Resolutions etc... then as soon as its newness wears off... Resolutions not kept etc... the "New" year gets rolled into the year, or this year... until the next "New" Year comes around...per se.  Why do we have to wait 300+ days to mark a New Year...  I choose to make a conscious decision to mark a New Year at the moment in time I am "timestamping" past-done, future-begins.

I say Happy New Year, as this past year I think has been one of the most trying, yet blessed years of my life... not that I always felt as so, and at any given moment could be caught off thinking... what I wouldn't give for a true "do-over"

I apprehensively tip-toed into January... holding my breathe... as the date came closer and closer to the 21st... the swell of emotions were on most days incapacitating.  I couldn't wait for the 21st to pass... then the 27th... silly I suppose as really passing them didn't erase the seemingly irrevocable effect they had on our lives last year.

It seemed to feel like they had to pass in order for it to be "wiped away", and a New Year begin... or such.. so I say HAPPY NEW YEAR!

Hold on tight... looking forward to this new year and all it will bring... and glad to be able to put the days that impacted Franki's life so profoundly behind us as you will.... praying that next year January will be just another month w/no trauma attached to just making it through and past the days.

I don't ever wish to move through time again like this... so again I say Happy New Year!!
Welcoming the Freedom to begin again....

Wow.. been a while since I called for a Tea Party... :)

Over a Month!  Only goes to show how fast time goes by... and not to be confused as a Pity Party... as that is truly not what I'm looking for...ever... just rambling/venting in my usual blather.

So many emotions surface at times you just wish you could tell them all to... fly off, yeah fly, we'll keep it clean...

Some days are such an emotional roller coaster you just want to puke so as to stop the ride...
I've done alot of working on the whole not letting the people/issues etc around you, become you, or your mood etc.  Cut the emotional and energy suckers from my inner-circle so as to not drain me... but I have a question...

How the hell are you suppose to not allow, or be unhappy, or completely drowned when there are certain things that HELLO no matter what you do, change etc you cannot put a positive spin on it, you cannot no matter how hard you're trying... solve it, and no matter how much you focus on the dream it just feels like some one like Joker is out there laughing hyaena-ishly as he dashes those dreams to shreds in one blink... with obviously no true life Batman to broil his lame-laughing ass for you.

Don't get me wrong, I will still always seek the positive, will always look for solutions, will always help whenever I can... it's just who I am, intermixed with that though I will also continue to distance myself from what/who etc that have historically/habitually drained me as I have become more set in who I am, and still need to be.  I do not wish to be used as a Welcome Mat when those wish to walk over me come a calling to just continue to take, and take... kinda like vultures however <Newsflash> I'm not a carcass yet so they can just fly off too ;)

So.. with all that in mind... (and so much more truly)

How do you put a happy face, when your child is still suffering... in your arms... and there isn't a damn thing you can do for them or to fix it... (previous post True Tea Post ~ The Beast better known as Seizures.... tries to answer that but somedays it just doesn't feel as such)
How do you handle politely, w/out hurting anyone when your child is being crushed by undue and unnecessary responsibility...
How do you delicately handle positively w/out alienating anyone that there are appropriate times to be selfish, and other times it's more appropriate to be selfless...
How do you prepare for the worst, while moving through the day believing in the best...
I read somewhere and it's so very true... the hardest tear to wipe away are the hidden ones...
Maybe that is the solution, to cry... just cry...
How do you do that when you're not a crier...
How do you continue to help others when you feel so flying, (still keepin it clean!) helpless...

Again, don't get me wrong, I'm not having a war or question of Faith here, I do *know* how to, and I do cling, (sometimes with the very thread of what's left in me) to Him however, I'd be lying to say I still want to know at times...  HOW DO YOU... I know He'll answer in some fashion and I will go Ahhh yes I needed that again... but it's in those moments before the AH HA moment comes... and even then... I still has the lingering questions above "unanswered" if you will... but with a renewed strength in moving through the unknown more clearly... if that makes sense at all...

Sometimes words are just that... and you cannot figure out how to put to words the feelings welling up inside you so violently you feel like your drowning from within...

I would like to be more open... but at the same time being open becomes a number of things...
Being honest that you have fear... eh that I can handle since we all know I am fearless LOL ok seriously, I'm no stranger to fears but to admitting precisely what those fears are... whole other ballgame buddy!  I firmly believe in not verbally "putting it out there" the whole what you talk about you bring about thing... yet know somethings are necessary to talk about as a reality not to be confused here.
Being vulnerable... HA there's a beast all of its own...
Being weak... Ok who the hell typed that... :p
Being honest... I've discovered all too many can't handle the truth, and those that say they can, either don't want to hear it, or even after hearing it still refuse to acknowledge it.. I get that too it's not an easy task
See where this is going...  vicious circles...

Think it's simply just time to become a square perhaps...  so much for Midnight Ramblings...

Tomorrow is the dawn of a new day... and here's to all the above being washed away by His Mercies in the Morning... I'm going to try to rest and Let Him take care of what obviously I cannot... <sigh>

When the Dr says, "We need to do a Discography" RUN...

Many of you who know me... know I'm blessed (per se) with a high tolerance for pain... so I don't cringe easily and if I say something hurts... it's typically something that would render others to tears.   I'm not saying this to pound my own chest and swing from vines...  it's just always been that way.   I've been also however, cursed (per se) with that same high tolerance for pain meds, so it's a good think I have a high pain threshold...

I've woken up during or immediately after surgical procedures... and I will not bore you with the graphic details... but let's just say again I've been told numerous times by Drs etc that they cannot believe I was awake, or tolerated what was happening etc etc...  again not pounding my own chest here LOL  as I always used to say to my kids... someone is always bigger or badder out there so...

Today was the day I met it...  so seriously for the weak/faint of heart/pain etc... if you are told you need to do this... make sure you are well prepared.   I knew because the Dr I see was "kind" enough to let me know it was not going to be a pleasurable experience... but "necessary".   So I thought I would prepare myself...

I watched a video of what it was prior etc...  so I knew it potentially was going to be uncomfortable, (again gauging by my personal levels for pain and toleration of other procedures), however  WOWSA....   I think I met my match... and I will pass on *any* future re-match Thanks, but No Thanks...  :)

Love yas!!

True Tea Post ~ The Beast better known as Seizures....

I posted this to a Modified Atkins Diet for Seizures (MAD) Support list that has been a Godsend for me in response to a Mom who posted Ref. Being Disheartened... My response:

Tea Mails are my "Pour a cup a tea and relax a moment" (aka I'm going to ramble a bit, ya may want a drink while reading LOL!)

The way I see it per se is this, we've lived through what many can't fathom let alone begin to understand.

We've learned more medical terminology and specialties that many Drs don't touch upon during their entire careers.

We've not only thought outside box to find whatever answers, hints, potential clues even... That you wouldn't find us near anything that slightly resembled a box-like shape ;)

With that being said... And on a more serious note...

If anyone were to say they weren't disheartened along the way... Hmmm I'd be up to challenge that... 'Cause how could any of us *not* be... The beast we are fighting is something that truly no one has the answers as it effects each of our children, and adults to the point each are unique with not only what can trigger but what type and/or duration of seizures it may trigger (or not) etc.

We are in essence life long detectives racing to solve this mystery that in many cases robs our children of their very life, the life we dreamed of while expecting them, adjusted a bit once the first gutting blow of a diagnosis hit, and so on and so forth... and we all just don't speak of it. Instead we run a grueling race just as fast and hard as any marathon athlete, because we are keenly aware that the ultimate price that could happen if we stop searching, doing, or solving the puzzle each teeny, tiny piece by piece, is an unspeakable tragedy and the beast has no mercy on whom it chooses to rip from us in a blink of an eye...

So we hold on tight with every fiber of our being, at a cost that will and can never be totaled, and cling to our magnifying glass with all we have in the very core of our beings to solve our loved ones mystery of...

God is it... Or was it... Or perhaps it could be...

Ultimately we all secretly celebrate each and every seizure free moment, pray for the seizure free days, weeks etc. Truth be told we all secretly sometimes don't speak of even *those* for a fear of "jinx-ing it" or such... Also almost as equally disheartening :(

I have always said, and will always say you must go with your gut... (No pun intended) if you think you need to go pure, change timing, let your loved one sleep in, or any other "feeling" you get that may, (or may not) be the next piece... Its always a piece, just were it fits or when... We haven't quite gotten the full clear picture to cheat from yet...

We're all working on it and some way, somehow we will continue to do so until we get the answers...

We will get disheartened, we will get weary, we will have many days of a multitude of emotional turmoil, but what we won't do is give up.... Not while a breathe is in us to breathe.

Nor will we stop helping and supporting others on the same journey... as in doing so we too are carried.

(((((All))))))
Love yas!!!

Field Trip and Dreams :)

Civil War...

Talk about a topic always somewhat fresh on my mind... for different reasons per se, but close in the forefront none the less.  Even though by definition of the words is quite the Oxy-Moron huh?  Nothing is very "civil" in and during times of war...

Franki was not that impressed as we were walked through what a Civil War Soldier faced, had in their possession to fight with, etc.   Dillon however was... he loves cops, guns, soldiers and soaks up all that information.  Sometimes a bit too much LOL!
He was also engrossed in their form of communication during the war... (Flags waved in particular directions that spelled out the messages,  yea no cel phones or texting then <gasp>)

Those who know me know my "line" in reference to the Civil Rights not having reached a local county near to me, to be unnamed to protect the guilty.  ;)

While the Civil War was the beginning of shall we say Freedom for all, as opposed to Freedom for some, yet when I allow my mind to wander (Ha!) and I look around and feel that we still really, truly do not have Freedom for all...  not when far too many still live oppressed for a multitude of reasons.  

I still feel so strongly that if our Fore Fathers were to see what has become of all they fought for, they would not be happy campers by a long shot.

I have a Dream...  no truer words were ever spoken... I'd like to see the day all the dreams, past, present and future come to fruition.  Since in my opinion this war has been going on for quite some time intricately, incrementally, and at times almost blatantly indiscriminate.

From Lincoln, through to King Jr whose lives were taken for it, not to belittle those who passed before them, or all the soldiers that gave, and continue to give their lives fighting for it... we all have that Dream...  I'd like to think somewhere, at some point in time... my children or my children's children will see it... though most days this may appear to be a bleak inspiration...

I plead the 5th most days...

However, I think I've reach one of those moments where I just have to let it out... so as to let it go so I can move on in some fashion.

I'm tired of being told how awesome I am, when I can't find a way to help my kid...
I'm tired of being told how lucky my kid is to have me, when I can't find a way to beat this...
I'm also tired of telling people it's really I who is lucky...
I'm tired of being the center of everyone's world, when my world feels like at any given moment it's going to come crashing down around us all...
I'm tired of being gutted every time I get my hopes up...
I'm tired of questioning my faith for getting my hopes up in the first place...
I'm weary, weak and worried what tomorrow will bring.... and I'm tired of that too... as it's totally unproductive.  What a waste of energy... better spent elsewhere.

I'm more tired of those around me that don't have a clue...
I'm more disgusted however with the ones who try to pretend they do... (and they clearly do not!)

I'm tired of the end of the day coming faster then I can plan for... and all I planned to do isn't done and I just want to crawl into bed, wake up and it's all some twisted, convoluted, horribly bad dream...

I wake, and my teenager is fighting with me over getting a learners permit in May, not hoping we have a new power chair he can fit in by then... and a way to transport him in it.
He is playing football or some other sport that I would be cheering him on at, rather then cringing each time he hits his head or spine on a step, seat, or such because he is so vulnerable... which simply sucks...

Yet, when he walks in the door in a few hours... this will all fade away... and what I'm tired of will diminish w/one flash of his smile, and be forgotten with his hug... not that it doesn't return from time to time... however I'm thinking the more I can allow it to be acknowledged quickly, and get rid of that emotional weight... it will fade more expeditiously and dare I wish for it to never return... because quite frankly I am soooooo very tired of being tired.

I'm sure he is even more then I, so who am I to be complaining...