Ben's Brigade Booster Site Launched!

Yesterday we launched the website for the Ben's Brigade t-shirts and hoodies. We have been blown away by the response so far. We have already surpassed the minimum requirement for a 4-week booster, and we did it within 24 HOURS!!! I cannot wait to see our army of supporters walking through the streets of Salt Lake with their shirts on.

I will admit, I was a little worried about this fundraising stuff. I am not comfortable asking people for help in any form, and asking people for money is that much harder. Then, on top of that, I started worrying about how to present our situation in such a way that fully expressed to people what we are facing with CF without exploiting Ben or sounding all "woe is me."

I want to make it *very* clear that we love our lives. We are happy, and Ben is healthy--now. However, CF is hard. Every day. We are blessed that Ben doesn't require hours of treatments every day like many with the disease and that right now he is just an awesome little guy who requires a few extra steps. But every time I read about what many other CF parents go through on a daily basis, I am smacked in the face with the reality that it may not always be like this. We have been fighting with our local pharmacies to get a vitamin that Ben needs, and it has been very frustrating. Ben has to get two RSV shots every month as well as regular blood draws to check liver and vitamin levels--and all this in addition to his regular baby vaccines. Right now he's fighting his first runny nose and developing a small cough. I try not to let it worry me more than usual, but I am still learning where the line is between "regular baby sick" and "CF baby sick." Breathing treatments twice a day are a physical battle almost every single time, because our squirmy little worm wants to *move*!

And then there's the harsh reality of that life expectancy. It's easy to ignore it when it seems so far away. And it's easy to ignore it when I look at that sweet angel face and see my perfect, gorgeous, loving son smiling back at me or leaning in for a snuggle. But sometimes, when I least expect it (like right after launching the t-shirt site, for example), it hits me and I stop breathing for a second. And THAT--that moment, that feeling, that stark, brutal, all-out FEAR that I feel--THAT is why this matters more than anything else. That is why I can ask for your money even though it makes me uncomfortable. Because this Momma isn't ready to sit back and accept a 41-year life expectancy. WE NEED A CURE!!

I will never find a way to express my gratitude for your support in a way that makes you feel what I feel every single time someone signs up for our team, or buys a shirt, or shares the link on Facebook. But know that I notice every single time, and I have to fight tears of gratitude every. single. time. Your support gives me strength. And hope.

Thank you.