So here we are a new beginning. I have decided to cross over to the dark side so to speak...to blog. To have a space in my unraveling world where I am free to just be me, say what I wanna say, and at the same time be free to be honest. No holds barred...
I am a mother.
I am a wife.
a daughter, a sister, an auntie, a cousin, a granddaughter, a friend, a confidant, an organized OCD freak, who sometimes gets lost in the shuffle of life in the Jones house of boys! I have real honest emotions that attack me every chance they get. On any given day I am happy, fearful, sad, pissed off, hopefully optimistic, frightened, worried, ok maybe overly worried, but I somehow manage to hold it all in. Along with all of the above, I am also a full time nurse, full time stay home mom, full time respiratory therapist, full time medicine and appointment scheduler, full time boo-boo kisser and bandaid applier, full time researcher...phew...
I am a mother of a child with Cystic Fibrosis...
you can get caught up with my son's medical history at his caring bridge site at www.caringbridge.org/visit/connerreedjones for background on his story and our journey, but this site is my site of freedom. With this site I am allowing myself honesty. To cry when I need to cry. To scream when I need to scream. To vent when I need to vent. My son is very sick...and I need this for my sanity, not so much for people to read as it is for me a great way to journal my frustrations....get it out of my head so that maybe i can catch a few z's at night (HA!)
I am doing the best that I can juggeling all of this, but it has become apparent that in CF (cystic fibrosis) there is a lack of the big, dark, horrible TRUTH. Cf is a DEVASTATING, horrific disease with no cure. NO CURE. Life with it isnt always as "Bright and Shiny" as the CF foundation wants you to believe. I am on a quest for more information. Better, more honest answers. I will never give up hope that CF will one day be cured, and I will always fundraise towards a cure, but I pray that it will be soon enough for my son. Uhg. There it is...the very un-bright and un-shiny Cf that I live with everyday.
I am a mother.
I am a wife.
a daughter, a sister, an auntie, a cousin, a granddaughter, a friend, a confidant, an organized OCD freak, who sometimes gets lost in the shuffle of life in the Jones house of boys! I have real honest emotions that attack me every chance they get. On any given day I am happy, fearful, sad, pissed off, hopefully optimistic, frightened, worried, ok maybe overly worried, but I somehow manage to hold it all in. Along with all of the above, I am also a full time nurse, full time stay home mom, full time respiratory therapist, full time medicine and appointment scheduler, full time boo-boo kisser and bandaid applier, full time researcher...phew...
I am a mother of a child with Cystic Fibrosis...
you can get caught up with my son's medical history at his caring bridge site at www.caringbridge.org/visit/connerreedjones for background on his story and our journey, but this site is my site of freedom. With this site I am allowing myself honesty. To cry when I need to cry. To scream when I need to scream. To vent when I need to vent. My son is very sick...and I need this for my sanity, not so much for people to read as it is for me a great way to journal my frustrations....get it out of my head so that maybe i can catch a few z's at night (HA!)
I am doing the best that I can juggeling all of this, but it has become apparent that in CF (cystic fibrosis) there is a lack of the big, dark, horrible TRUTH. Cf is a DEVASTATING, horrific disease with no cure. NO CURE. Life with it isnt always as "Bright and Shiny" as the CF foundation wants you to believe. I am on a quest for more information. Better, more honest answers. I will never give up hope that CF will one day be cured, and I will always fundraise towards a cure, but I pray that it will be soon enough for my son. Uhg. There it is...the very un-bright and un-shiny Cf that I live with everyday.
