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...

And the beat goes on they say....

What happens when the beat stops...
Or stalls...
WHAT IF you never really heard the beat???

Can you hear the beat?

Somedays I simply do not *get* the beat... the concept of it... or the purpose of it... and No I don't need to get it beaten into me... I'm just rambling about a simple fact...

WHAT *IS* This beat we all speak of....

I would like to know what it goes on to do...
Or even what it did?

How can you feel so blessed... yet in one milli-second be so pissed...

Have been having the "use" as they say...  granted my "use" is far from the "normal" person's "use" but... yea whatever...  LOL!

Many twists and turns the past couple of weeks... have felt very blessed...

Franki transitioned to the Ketogenic Diet well, Christy/AJ had a good vacation, returned home safe and in one piece... despite driving home with Hurricane Irene shotgun =0

I survived seemingly unscathed from both of the above LOL!
I prayed soooo hard to not lose power during the lovely Irene visitation, not being selfish about it... just that I was in a panic of what and how I'd keep Franki on the diet correctly...  edible cold foods I did not have stocked etc...  true reality eye opener to be honest on how vulnerable we can be in a split second.  Not to mention how unprepared...  :(

I got some personal health news that will be confirmed, (or ruled out), after some additional testing this Thursday, which is not the greatest of news due to family/hereditary implications if in fact it's found completely accurate, however provides alot of answers to ongoing health questions that have been lingering finally;  so we shall see.  

So you are smoothly moving along in life as it is... feeling blessed even in some lingering "mess" per se... then you get a text... and the bottom falls out...

Not necessarily *for* me... but it most certainly *impacts* me, and many around me... it impacts the lives of two young boys I've come to know over the past few years...  and I look up and go.. REALLY!?!?!?  WHY??

I know...  don't tell me, I know...  I won't know the Why's...  we never do... but in these few moments of being so immersed in the hurt... which you try to bridle so as to not ride off, hell bent towards full fledged seething anger...  I try to just breathe...

<Sigh>

I can only trust... and pray... but sometimes it just doesn't feel like it's enough...

You always know when it's wrong...

I know for the most part I'm preaching to the choir... but for some I just don't get why others can't figure out the most basic instinct in our humanness.

We all *know* when we are about to do something... if it's "wrong" or not... wether you chose to listen to it or not is obviously up to you.  Also you're the only one that you need to answer to... so why...
The whole issue of acting like you don't know it... and/or yet, go ahead and do something but then feel the need to try to hide it... HELLO... really?  Why ~  1. Hide it?  or  2. Do it at all?

More importantly, if you know your are right... or feel what you are doing is, regardless of how others feel about it is RIGHT for you... again why Hide it?

If you have to hide and/or lie... whatever you are doing... hmmm IDK I think it speaks for itself...

I just won't ever get what the big deal is... it's no big tough thing... it's believing in yourself, what you are doing, standing up for yourself... (if need be)  OR <gasp> admitting to yourself it's wrong... and perhaps rethinking things?  

Just my two cents... off to bed, long day tomorrow :)

I suppose at some point... it all will flow...

I haven't written much... commented much "publicly" since this last setback in Franki's journey... Our Journey... not just his, mine, my other children...

I get the whole issues surrounding thinking positive, and many always ask me how can this be... or more accurately how can *I* be... I guess I can only answer that question with one... How can I *not* be ?

If I were to dwell on the negative where would it get me, more importantly where would it get my son?  What example would it set not only for Franki, but what about my other children?  I shudder to think of where any of us would be right now had I not learned, (NOTE: I did not say *mastered*), that laughter is the best medicine, and focusing on the positive doesn't mean the negative doesn't exist... it just means I refuse to fuel the negative or give it *any* power/control over my thoughts, feelings and/or life.

5 Simple words I try to adhere to...  What you focus on grows!  Period.  It doesn't say the world will be a better place, cause it won't.  It doesn't say chanting positive mantras makes it all better, cause it can't.  It also doesn't say it can make all the hurt, pain, suffering, bitterness, gut wrenching anguish and/or worry go away, cause it don't.

Let's talk a walk a moment on what I could focus on daily... and you tell me how long you could stand to be around me...

I wake every morning with a pain level that to most would already have them whining and crawling to the bathroom... but this isn't about me.   So will put that part of my life back in the closet :)

I get up and begin the day, depending on what prep I have done, (or AJ/Christy/Dillon have done), getting pills together for the day, Franki's water ready with his first dose of meds to wake him up with... so he can take those and have a drink while I heat up, (or make if needed) his breakfast and thus the day begins.   I begin to pack his foods for the day depending on the day, and his appointments and/or therapies etc.  I gather his clothes, diaper, braces, etc.  Get ready to feed and dress him... as I chat to him... Will this be a good day? (obviously I can think or a bad day? but I never project it will be a bad one), and I do all in my power to set it up to be a good one.  Hopefully he has rested well, and soundly, praying he won't have any issues (aka seizures) today, alway thinking and praying for the day he will regain what he's lost... that is a pain that is unmeasurable.   I guess that is where I get my strength and my own "check in" if you will... HOW can I possibly be negative or whine when this kid can go through all he does, work as hard as he does and he still flashes that smile like he just won the lottery?!?!

I don't know if I went through what he has just once... (let alone another 5 x) would I be so damm happy anymore... granted I can hear some saying well you did go through it... it's not the same... different roles, different rules :)  All I can do is pray for him to get well and pray that he will be able to do all he did and more before that morning in January ripped all our lives apart with no mercy for any of us, lest of all my then 14 year old son.  Not forgetting my other sons who had to watch as their brother seized for over an hour in our home while watching me become more and more agitated with the inadequacy of the response time of the paramedics and the "first responders" that were here... Not to mention my daughter who had to watch her mom lose it at the hospital ER once he was finally "stable" seizure wise 2 hrs later but in a drug induced deep sleep on 02... neither circumstance something I wish to make a habit of doing in front of my kids.... nor anything any child no matter how grown should have to experience.

Anyway.. where was I ... OH trying to shift my outlook on a day to the "negative end"... see how long anyone would think they'd hang around me LOL :)  I think I'll nix that idea...  I realize there are many who know me, and many that I know, who carry their own burdens shall we say... some are heavier then mine, some aren't, but they are burdens just the same.  Hashing through mine to prove how negative I could, (or some would speculate I should be), is quite counter productive I've decided :P   I've already delved into that emotional basket as far as I wish to for one evening...

Suffice to say... the positive end to this...  what holds me together... what keeps me going... it's not quite as clique as it sounds trust me.   I pray... and I yell.. and sometimes I even scream and throw some temper tantrums, but He carries me anyway... and even when I feel that He isn't... He still does.  Which is really what/why this post was even being written... :)

In case you don't know me well, most my thoughts, prayers, epiphanies if you will happen while I'm driving alone... through music, or can't sleep.  Hint the not sleeping happens much more often then my driving alone LOL!

Tonight was a driving alone...  several songs came one that I drove, cried and prayed... watching the sun set and my clouds.. and I say mine because that is one of the tangible things I can see His artwork that I believe is done daily for me... if I chose to take that moment and enjoy it I can almost feel the peace for a moment before the world comes rushing back in...

As the songs played, obviously my thoughts went to Franki... and it's hard to describe my thoughts, feelings etc as sometimes like tonight they just whooosh in and spin around a fine mix of all of them... anger, sadness, yet joy and thankfulness too... it's quite a ride I tell you...  However, the main reason I go into all this is because of course I wouldn't be human to say I don't have doubts, fears, and all that goes with this life as well.   Days I'd like to give up... of course that too.  However, in some fashion on the worst of those day He reaches out to me in some tangible way... always and I know I have to trust that it will all be OK... I cannot define what OK is going to be or mean... but I just trust and rest in it... because quite frankly... what more/else can I do.   Get ill worrying that it won't, can't and don't.  yeah.. I could do that but for what? and why?  what help would I be then to anyone?   So OK is yet to be defined but so far OK has been OK...  Franki has beaten all the odds and continues to do so... therefore OK isn't a bad place... even if it isn't the best place right now for the moment...  per se.

So I listen to the songs... which reflect back to a night in Feb/March, one of the worst nights I think for me emotionally... and it was the first night I heard some of them and here they were tonight playing on the radio...  yeah.. that's random right LOL HA!   I encourage you to go listen to them.. so you can follow and get why it means something when I tell you what happened after this lil ride alone tonight...

Beautiful, (http://www.youtube.com/watch?v=Z6pS5HCkgPI), was the first..  and third was Safe, (http://www.youtube.com/watch?v=hZAUq1-c8dw&feature=related).  I know the second one but cannot remember the artist etc. to find the video... yet.

Take a moment...  trust me...  and listen to them... while listening think of Franki, and just imagine if you can/will what obviously was going through my mind...  he is Beautiful and he does deserve and was made for much more then this.. he is my treasure of course he's my son, but he is also HIS son he is sacred as he is HIS.  I pray for the heart for all of us to continue to fight... and yes my dreams have fallen apart.. and I have heard of the One who can give sight to the blind or raise the lame to their feet but WHEN was He planning to do this for Franki!  Granted it would be Him doing this *again* for Franki/us...  so who am I to bitch right?    He has always in the past... so why do I doubt, or complain about it ever, now... I know He holds Franki, (each of us), but somedays yes I too am not totally positive about it all... 

However, if you listened to the above like I said... you will so totally get it when I tell you that I know He is still with us and carrying me... because it was literally w/in 5 mins at best after Safe  played, that I spoke to Christy... as she had great news!

Franki, (though we have no photographic proof yet LOL) got up onto the couch himself from the floor tonight.

Something we all take for granted... he's waited almost 8 months to be able to do again...
I am thankful... I am blessed... even in the darkest of hours of my own thoughts... He holds me and carries me and my family through.

No cup of Tea necessary....

So many things go through my mind lately... so I thought blogging would help... and also give me a chance to share my "Ramblings" again... so what is this?!?!  I cannot sit and write??  WOW...

I'm certainly not shy... and I certainly can tap away about almost any topic just about.. and I certainly don't lack opinions on others (stop LOL those that know me sooo well LMAO!).

IDK... is there such a thing as bloggers block??  (AAH HA!)

I decided tonight I would write aimlessly and just POST...  I have now accomplished that so.. off to the couch to not sleep LOL :)  

New Blog...

Not that I ever had an "old" blog...

Mind ramblings can be a dangerous read sometimes :)
However they are just that... Mind ramblings... My Mind ramblings... 'nuf said :)

I have always given the clear warning of Pour a cup of Tea... as it may be a long read... so you have been dutifully warned :)