Just a few days ago I had a bout of being sick.. When I blogged just a few days ago, I did end up going to the Emergency Room. It is always a frightening experience for me because I have spent many days, weeks, and even months in the hospital.
Back in 2008 my life changed dramatically. A rare syndrome that effects 1 and 150,000 found me the lucky winner of Guillaine Barré Syndrome. Or as Americans now have become Initial Happy (GBS).. What I didn't realize is that it would try to claim my life over the last 5 years. Including giving me a death sentence that I beat and I was and am determine to live.. To see my children grow into adults.. To see them fall in love.. Get married and if I am truly blessed see them have a family of their own one day..
Really to instill the extent of this you would have to understand it is from working a lot (yes about 100 hours a week being a manager in an extremely busy gas station) to being bed ridden.. Trapped in your body, unable to move or speak.. Like in an awaken coma.. Is the horrific feeling you can not feel anything... Hear all around you.. But unable to communicate in any shape, manner, or form with anyone.
Also being rare (yet becoming more common now) not anyone can understand what you feel and what you go threw... And do go threw.. Even making you feel more isolated and alone from the rest of the world.
Yet, those that have had a disease... Cancer... Infection.. Illness... Syndrome.. That have been life alternating can definitely comprehend the tiresome nature that this beast can have on your body, soul, mind, and spirit.. Every day becomes a battle of juggling the war of: Do I want to keep fighting or am I just to tired and want to stop and rest for eternity.. And really peeps.. It is a realistic thought and selfish or not selfish if you haven't walked in the shoes of fighting for health.. Then you really can't comprehend or even fathom what I am thinking or feeling.
Truth of it is.. I had decided last year that I didn't want any more infusions... I didn't want anymore hospital stays.. And surely don't want to keep grasping for a breath of just maybe a good day will come..
I can't even recall a day that it was pain free.. Some days exhausted and stuttering.. A day where I don't have to hold onto something to catch my balance. A day where my foot didn't drag at some point.. A day that I woke up from being fully rested... Where there weren't any medications involved to alter my body just so I can function for the day.
The past year dealing with my teeth.. The only true thing I liked about myself.. Now I don't want to smile... And embarrassed by the way they look.. Medication had taken over my teeth.. Causing some to fall out... Me dig them out.. That decay has set in.. Because the dental cost is so expensive.. And just necessary daily life to help me live more comfortably had taken a toll on the back account.. My teeth doesn't seem that important anymore.
Any one that is in my shoes or has beaten the beast that knocks on your door all the time.. Waiting to take your hand, to lead you threw the door one last time, understands how just the act alone of shaking your head no.. Saying, "Not yet.." is wearisome.
However, I look for the future of having the opportunity of seeing my 2 boys now graduating school.. Since now the girls has. I am hoping for the day when the children are close to me maybe and want me part of their life.. And hoping to see them clinging to one another, knowing that they only have one another... That Daddy will be gone.. And Mama too..
I am hoping for glimpses of like today.. Where a few can get together.. Be nice to one another.. Even wanting to hug and talk to me. .I am hoping that more days will come where the sun will be closer to shine on my family.. And the shadow of hating one another or acting as if they do.. Judging and throwing stones at each other lives... Going days or even weeks of not speaking unless arguing.. will come to cherish the moments as I do, of just seeing a small text of I love you.. Will be held deep within their hearts and spirit..
That one day I nor any one else will have a regret of what was the last thing I said to them.. Or what was last moment, did I spend with them.. Or regrets of how many times excuses were made if not today.. I am worn.. But it is moments like today that make me want to keep shaking my head no at the beast.. And fight one more day to just see my family smile.
*My Thoughts For Today.*