Tuesday, March 6, 2012

The Top of Our Lungs

PainterI'm thinking of this for the name of our fundraiser this year. We've decided that instead of dozens of little ideas to bring in a few bucks here and there, we're going to do our Great Strides fundraising party style and throw a big benefit with music and an art auction and some great raffle prizes.

Our Great Strides walk is on May 20 this year, and directly after, we will head over to see our wonderful friends at the Magnolia Motor Lounge, who have generously agreed to host our shindig. The party will kick off at noon. There will be lots of fun local bands (TBA, stay tuned!), an art auction from local and national artists, and some great raffle prizes. I'm kicking around the idea of a washers or horseshoe tourney, too. We'll see how it comes together.

I'm so excited! And- really, really nervous. This is a big undertaking, and one I don't have any experience with. Basically, it's going to entail me stepping out of my comfort zone and asking all the people I know, and a lot of people I don't- to donate their time, goods, and services to our cause. In the name of funding the fight against CF, I can do that. I am a little scared that I can't pull it off, that people will tell me no, or that no one will show up. But at the same time, I'm the kind of person who sees a big opportunity for growth and for service and wants to jump out of my comfort zone to achieve it.

But then there's always the reminder of WHY we (the collective fundraisers of the world) choose the uncomfortable role of being the ones with our hands out. Asking people to give of themselves is HARD. And I never feel that my gratitude is enough to show them how much it means when they come through. The feelings that accompany this 'job' are heady. Remember why we're here...the hole in his belly...the scars on her lungs...the transplant waiting list...the lost children, husbands, & friends.

My friend Rebecca over at the UltraViolet Rock & Art Show (and the main inspiration for our benefit format!) made this video recently that I've been wanting to share, because it reflects so much raw emotion that lies just below the surface for me, too. The link will take you to the post called "Just a Mom". I was going to just post the video here, but the blog post itself needs to be read along with it. Sometimes we take on the role of the public voice of our cause, and we get used to sharing the personal things. We get used to telling the details of our child's disease, the pain, the procedures, the daily rigors of a CF treatment regimen. It becomes 'normal' for us. But every now and then something touches nerves we thought we had somewhat protected, and the heady emotion that is mostly kept in check boils over. Right now that something is the testing of drugs that can correct the underlying defect of Cystic Fibrosis. They're right there...just beyond our fingertips. So close we can taste it, and yet not quite ready- while our kids and friends and lovers are going to the hospital, being put on the list for a lung transplant, and dying, while we wait. And that part is still very hard to share. We are still the parents of children fighting a fatal disease. That's why we do whatever we can to bring in the money so desperately needed to find and make the drugs so that people with CF can LIVE with their disease rather than die from it. That's what makes it worth it to put my ass out there and ask people to help.

With any luck, I'll be able to make it fun enough that people want to participate.


  1. Hey, Amy! My six-year-old daughter is getting ready to get her g-tube in April. I have some questions that I hope you can answer. How long does the temporary tube stay in place until the real one is inserted? How long is recovery? How was the pain right after surgery?


  2. Lisa, I'm emailing you right now!