The campaign ads are fast and furious in the month leading up to elections. Then suddenly, the elections are over, and the camera shows the individuals in suit coats behind podiums, turning red in the face as they state their stance on a proposed bill or legislation. The final votes are counted, and it's either back to the drawing board or onto implementation. In a few short sentences, that's politics.
But, this is only one side of our representatives, legislators, senators, and other elected officials that we see. The other side is that they are human, just like you and me. They get up in the morning, brush their teeth, put on their socks and shoes, and travel to their jobs. Our futures are in their hands and they vote based on the information presented to them, which is why it's important for us to continue telling our individual CF stories.
When I saw all the CF advocates who met with their representatives in Washington, D.C., during March on the Hill, I said to myself, "I want to be on that team. I want them to hear Maddox's story. I want them to have a picture of him in their hands when they are casting their votes on medical issues, wages, science, and other areas."
A year ago, I never would have had that thought. It can be intimidating to have your name tied to something where you could be called to the Capitol, to be involved in “politics.” But, after seeing how impactful these meetings can be, I felt that this was something I needed to do to continue to push for a cure: to make sure the funding for CF programs is intact and the proper regulations are in place to protect my son as he grows up.
Here is the “behind-the-scenes” story of my life. I am a full-time working mom to a 3-year-old son with CF, wife, volunteer on a local board of directors, friend, and family member. I don't have much time in the day. I am doing laundry at 9 p.m. I am brushing my teeth while cleaning my bathroom. I am multitasking all the time. I don't have a ton of “extra” time in my calendar, as I'm sure most of us can relate to.
Even though I'm not in a position to add much more to my plate, advocacy has become an important adventure in our CF journey. Building relationships with my elected officials is a priority that I was determined to make work with my busy schedule. So, I started my journey and emailed the CF Advocacy team. After a phone conversation on what advocacy would entail, I started emailing, Facebook messaging, and tweeting my local representatives. That's right -- Facebook. They are human after all.
So far, I've had two representatives reach back out to me (mind you, I contacted them during the middle of their campaign trail). One of the representatives met with my husband and me during lunch, and one invited us to a family dinner at a restaurant (he brought his spouse and newest addition to the family, and we brought Maddox). Both events were completely informal.
Don't get me wrong -- it started off awkwardly, as you truly are complete strangers. But, after a quick conversation about the weather and the Green Bay Packers (common ground for discussion in Wisconsin), the awkwardness quickly faded, and the discussion turned as if we were old friends catching up. In both conversations, it was all about learning more about them: their hobbies, their careers, why they went into their roles, their true intentions while in office … and then, we discussed Maddox and CF.
From there, it was truly a learning experience for them, as they might have heard of cystic fibrosis but really didn't understand what it meant. Of course, because CF has impacted our lives so much, we feel that we have become the subject matter experts and need to share everything we know about it. We handed them a picture of Maddox along with a packet of information about his disease. We shook hands, grabbed a quick photo, and parted ways.
The meetings were only 30-45 minutes long, but they were so important. Now, when a new proposal comes across their desks, they can reference back to our conversation and reach out to us to discuss the potential impact that proposed legislation has on our family.
Since meeting, we've friended each other on Facebook and they have started to follow our Great Strides team's page. Now, I feel that we have a real connection. There is a face to the name, a story behind the photos, and a reminder that we are all human. Once they are back in session, I will send out emails just to check in to see if they have any questions, and I am hoping they will do the same.
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