Tuesday, April 13, 2010

Waiting on the world to change.....

When Natalie was diagnosed, it expanded my world immensely. Before Natalie, I lived in a world of me. Even though I had Caitlin, that was all that really mattered to me. Caitlin, me, my family and our bubble. I never thought past our problems, our fun, our everything....I didn't need to. Natalie changed all of that. What a sad realization it is that it takes a catastrophic diagnosis to bring someone out of the world of me and into a place where what happens to others truly, deeply, and personally affects them. Its not always fun, its not always happy, but regardless, the CF community rises, falls, laughs, and cries as one...what a beautiful thing it is. Today we're wrapping our arms around Sarah and Conner and their entire family....praying they find answers in Colorado, praying for them to find some peace during this unimaginable time.....

I find myself hopeful for a cure, not just regular hopeful....confidently hopeful, dangerously hopeful. I read up on Vertex and stare at that stupid line graph, praying that it would just go a little bit farther, wishing that it was already approved and at market level, wishing that the world was different for Natalie, for Conner, for Josh, for Ronnie, for Piper and the list goes on and on and on....70,000 times over. Until then, we are left with looking on the bright side, until then, we are left with the hope and reassurance that we find in each other.

And how awesome are we? Pretty gosh darned awesome! You can click on Ronnie's name above and read how the CL community raised $10,000 for CF in 31 minutes...yep, you heard it right, 31 minutes....with parents, cysters, and fibros that are sooo proactive in their own care, so involved in their own fundraising, so enthusiastic and ready to help where they can....how can we fail? The idea of failure is inconceivable and preposterous...We CAN find a cure, and we WILL find it. I just hope its soon.

Natalie is doing alright. Still has a cough, no fever though. Her Pediatrician seems to think its allergies...I'm just ready for it to go away. On another note, Periactin seems to be a huge fail.....we missed 2 doses related to the pharmacy being unable to obtain authorization from the Dr for a refill.....not that it matters anyway because her appetite is still the same...ugh! Natalie has been a huge life lesson for me, a huge revelation in the serious need for meds. Personally, I only take ibuprofen if I just cant take a headache anymore and have finally given in and started to take some Tums when i feel like I'm going to start breathing fire from acid reflux....so the idea that i may have been giving Natalie a useless medication irks me ....we'll just see how it goes until the script is refilled and go from there.

About to start my next big push for fundraising, my first round was a blubbering failure as evidenced by the big huge 0's on my Great Strides web site. Our walk isn't until October, so I have time. I'm just a little thrown off from the lack of enthusiasm from my first round. Guess I'm going to have to hit it that much harder this time. Anyways....I'm starting to ramble. Hope everyone is having a great week! Be well and Best wishes! ~Juli

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