Monday, January 25, 2010

An Introduction of Sorts.....

***First I want to really take a moment to spotlight something that I believe is going to be a huge movement in the CF community and sweep through like none other. A pretty awesome guy, a fellow Fibro =), Ronnie Sharpe and his fiance, Mandi, have started a new website just for CF patients and their family and friends. The website is called Cystic Life and has by far impressed me. The site is set up much like that of Facebook and is a FANTASTIC way of communicating with others who are living the same way. We are all warriors on this giant battlefield called life. It is an honor to be fighting next to people like this!!! So if you haven't already please take a moment to go check out the website. I will provide the link below. It is very easy to navigate. I truly believe that these are the things that are leading us to the cure!!!, where we can come together, unite and start our REVOLUTION!!! =) Thank you so much Ronnie and Mandi! =)***
Click on the logo to go to!!!

I wrote my first blog on tonight and thought I would share it here as well. I will not be doing this with all of my blogs however since it was a first and it marked the beginning of something new in my life I wanted to share it with those of you who are devoted to this blog. Thank you so much for reading, each and every one of you!! Including my Facebook friends. =)

Writing is now and always a huge passion in my life, as well as art in general. I never intend to "blog" or write about my disease, but it always somehow bleeds through my words. It is a part of who I am yet not who I am. I am a mother, a child, a sister, a evolve deeper, I am a writer, an artist, a lover, a fighter for my life and keeper of my home. I live to love and love to live. Life for me is bittersweet. I am the girl that writes all of her great ideas on the back of Starbucks napkins. I lose all of my life altering writings in the canned food aisle at the grocery store, but you can't win them all. They always seem to come to me when I can't get to pencil and paper. I spend a lot of my time trying to stay well. I only have one body so I have to be really good to it, amazing at that. Despite all the horror, sleepless nights, and traumatic turns Cystic Fibrosis has brought to my life, I have to say it has been a blessing. Without it I would not be me, and I would not know of a God who is bigger than me and bigger than this disease. Without it I would not know a love for my daughter that expands into another dimension, another time even. To desire to watch her grow into the woman God created her to be. To celebrate with her highest achievements and to pick her up when she fails, because she will fail, and she will be stronger because of it. Without it I would miss moments. Moments that pass by others like the wind blows. Watching a bird drink the morning dew on the grass out on my lawn. Hearing the beautiful etched silence first thing in the morning while the world sleeps. Without it I wouldn't know my husband. I wouldn't know what it is like to reach for him in the night and wanting to hold him forever. Forever. I would not know the depth of the meaning of the word forever. How it seems so beautiful when it is always an arm stretch away. No, none of this I would know. For me, my disease is vulnerable, fragile, ugly, yet precious. Being sick.....being well....being somewhere in between. It feels as if before the world ever stood, before we were ever blown from dust, when time hung empty in a black hole, even then I was a thought, I was an idea waiting to happen, and it was then God bent down and whispered a wonderful secret into my ear, that others will have to live a lifetime to learn. Yes it was then I was given Cystic Fibrosis. =)


  1. Hell yes, Swelch! I love your words.

  2. Amen cyster!!!! Couldn't agree more :)


  3. are a beautiful soul. My heart aches & rejoices for your journey. My son is 12 & has CF. He just found out(accidentally) the ugly fate of this disease. I had been trying to wait as long as I could before telling him the really bad stuff.
    The tears are endless.Keep are in God's hands. You & all with CF along with my precious boy & now also your daughter & husband are in my prayers. Keep fighting to good fight. xoxox
    CF mommy~tammy