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...
Tuesday, August 30, 2011
Wednesday, August 3, 2011
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 :)
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 :)
Tuesday, August 2, 2011
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.
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.
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