It constantly blows my mind how many different genetic mutations there are that cause the physical differences we have in the CF community. The highs and lows of this disease are thrust to the forefront every single day of our lives. Some CFers have the ability to run marathons, drive race cars, compete in bodybuilding contests or cage fighting, sing soulful songs, and destroy the opposition in Ironman triathlons. They are a great example of what it means to thrive against adversity. I love reading these stories and meeting these people that give cystic fibrosis a big punch in the face! It pumps me up!!
But what about my kindred spirits who are fighting in the hospital or waiting on the transplant list? They are just as remarkable! You see them with IV lines sticking out from their bodies. Some are patiently waiting for various organs to come. They have oxygen tubes and dialysis machines attached to them as a "long term temporary" solution until that telephone rings. Their bodies betray them. Do they get sad? Sometimes...and RIGHTLY SO! Do they feel sorry for themselves? HELL NO!!! They don't because they have the hope and the forward thinking that motivates them to show the world that obstacles can be overcome! While they wait to start the next chapter in their lives, these CFers write blogs, organize fundraisers, and sometimes sacrifice themselves to shield others against the sorrows of life. My sister Angela, even in her last few months, comforted the sick children who were in the hospital while she was and supported parents who were struggling to find answers. Families who were at the beginning of a life filled with all sorts of ailments: heart defects, cystic fibrosis, muscular dystrophy, or just facing a routine tonsillectomy. Her love knew no bounds and I'm convinced that's one of the reasons she was here on earth. To show the world that greatness can be achieved by simple gestures of compassion.
But the "average" CFer - what the hell does that mean anyways? - lives their life like the "Average Joe" or "Plain Jane." They have jobs to go to, bills to pay, chores to do, exercise to trudge through (and some times bitch about), doctors to see, and hospitalizations to deal with. They ask the questions and make the choices that anyone else does, but there's always the "extras" attached to them. Things like: Can I work AND stay healthy? Should I or will I believe in the power of love and have faith that another person will choose to walk through my journey with me? Should I have children, adopt children,or just get a pet? Or should I choose to concentrate on strengthening the bonds with family and friends I already cherish? These day to day choices don't always make a huge splash in the real world, but there are enough of us around to make sure that the world will never dry from our constant cannonballs into the pool of life.
THE BOTTOM LINE IS THIS:
Whether we feel like a million bucks or are battling for breath, we are a wonderful community that deserves to live. If you are interested helping us fight CF, go to the CF-related links section on the top of my blog. They'll have plenty of opportunities for you to give. I wouldn't have them on my page if I didn't believe in their message. Here are a few in particular that have big events coming up:
I've already written about Cystic Life. Check that out here:
Cystic Life Blog Post
The Breathe 4 Tomorrow Foundation - An designated 501(c)(3) non profit organization founded by Sarah Morris that provides assistance to CF families nationwide who are dealing with the financial struggles - paying bills, repairing vehicles, medication purchases - that can overwhelm those who are already fighting the monster that is cystic fibrosis.
http://breathe4tomorrow.org/
The Rock CF Foundation - An designated 501(c)(3) non profit organization promoting cystic fibrosis across the world via music and positivity. Check out my bud, Rock CF Founder Emily Schaller, here for more info:
http://www.letsrockcf.org/
The Blooming Rose Foundation - Another designated 501(c)(3) non profit organzation that provides assistance to new diagnosed families and veteran CFers. You can contact the founder of the BRF, Kat East (CF Momma extraordinaire), via their website.
http://www.bloomingrosefoundation.org/
The Cystic Fibrosis Foundation - The CFF is a designated 501(c)(3) non profit organization that funds research toward finding a cure for CF. CFF's annual Great Strides CF Walk is happening across the country over the course of the next few months. Go to the link below to find a walk in your area that you can participate in or donate to. If you know the name of a walker you can find their team by typing in their name on the Great Strides search engine.
http://www.cff.org/great_strides/
Each of these non-profits are worthy of your hard earned money. They all provide valuable support and services to different areas of the CF Community and I appreciate them all. Contact me if you have any questions about them.
Here's an excerpt from my Great Strides letter last year that goes for the other non-profits as well. I mean EVERY DAMN WORD OF IT:
"I understand that times are tough right now. I will not feel bad if you are not able to give. Your time, love, and friendship are far more valuable to me than money. This is not about me anyways. It is about the kids I see at clinic appointments and the parents I talk to who are struggling to understand why their babies have to live with this disease. I want to raise money so that these little ones won't hurt like I do everyday and Angela did for 16 years. They deserve to live without the mental and physical trials that come with Cystic Fibrosis. I watched it consume Angela. She was a tough and brave soul who never gave up. I raise awareness for her and I am trying to make her proud."
To all the CFers and families of CFers that read this:
I love you all and you have my undying respect. Keep living the dream.
Peaceful, Cure-finding, and Quality of Life Things,
Josh