Tuesday, March 16, 2010

Why do I need the CF community...

When we first joined the CF club, I knew nothing... I starting reading like crazy and trying my hardest to understand a disease that quite honestly is still a mystery... Our Surfer Girl Nicole took me under her wing and really helped me too grasp some basics... She instantly called me family and even explained that someone with CF is known as a CFer... cuz I didn't even know that much... I knew instantly that God specifically chose her to help me during this terrible time.... Her understanding and gently heart is exactly what my spirit needed at the time.... I cried and cried and she let me, knowing that this was a grieving period for me.... She went on to express to me the support of the CF community and how much they all meant to her.... Of course I knew no other CFers, just her....

And then I started venturing out, I started blogging.... And one by one I meet other CFers, mothers of Cfers, spouses to CFers - a whole community.... Little did I know how right she was, little did I know how desperately I would need this entire community.... Little did I know that her spirit would linger on with each and everyone of you....

Because Cystic Fibrosis is so rare, without this online community I would be so lost.... Each of you have taught me so much not only about the disease itself, but about each of your spirits... Without even knowing it you have each tugged at my heart strings, gave me the courage that I can do this and given me hope that the future can be different.... I value all of your different opinions, your different takes on treatments, and your different spins of positivity... It is what makes us all unique, it is what makes us all valuable to each other..... It is what allows us all to grow..... I am inspired by RunSickBoyRun with all the time and energy he dedicates to the entire CF community..... and I am encouraged by Deb at Dirty Socks and Pizza , cuz I think WOW if she can do this for 16 years and still make me laugh, then so can I...... I am blessed with all the moms with little ones - A Cure 4 Lil' Chris , A Day in the Life of a CF Mom , Ayla's Army, Nathan's Fight, Phoenix's Fight , Groettum Family and many many more parents that have taken on this battle, more are listed on the bottom of my page... You are all important as you couragously begin this long journey along with me and my little one... Sharing with me all your new discoveries and inventions in how to make this life just a little easier.... Then there are the older ones who are wise beyond there years, having ventured through things beyond my understanding, and are gracious enough to share there journey and in doing so inspire me that hope is right around the corner Jessica's Journey , My Life as A Livingston, A Matter of Life and Breath, Katelyn Elaine ...... And then there are ALL the courageous fighters that lost their battle like my Surfer Girl Nicole... Who's spirit continues to touch me daily, and who's fight will continue to push me forward down this path....

I have been so blessed to have such a great friend, that shared with me what an awesome group of people the CF community is comprised of... Like I said before, each of you are so important to our family and I want to thank all of you for sharing your journeys with me and allowing me to learn from each of your unique paths.... I am truly blessed to know ALL of you ( I could only list a few, cuz it would have taken me all day to cut and paste everyone links, but you are all below) but I am truly blessed to know ALL of you... Without each of you this world of CF would be so incredibly lonely... THANK YOU!!!! You keep my spirits high and my hope alive... God bless you all...

3 comments:

  1. Glad we could give you a glimmer of hope! I am 32 years young and looking forward to 32 more!

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  2. What a great post! The CF community is always so open-armed to new comers, to guide and listen and talk us through the rough patches. I feel we are a little group of family and great friends! I have created lasting friendships online that most people don't understand. They ask how I could be such close friends with someone I have never met. It is our journey and CF that bring us together and for that I am actually glad for CF!

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  3. Thanks so much for sharing some of the blogs you follow!

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