Saturday, March 31, 2012

Catching Up & Moving Forward!

It's been a while since I've written a blog post here, so I figured I was long overdue for one. Things have been pretty great since I got back from Lobby Day in Washington, DC at the beginning of March. There's an old saying that "No news is good news." In this case, it's true! Things have been getting back to normal, and I've been able to return to my regular day-to-day routines without having to think a lot about my CHD. That said, however, it's still something I am frequently aware of; and I suspect it always will be. But not having to think about it actively in the sense of it affecting my regular life has been huge! And the more I am able to do that, the more I am grateful for the healthy life I have.

Since I got back from DC, my March has been pretty packed with a lot of exciting things:
  • Sang in four very successful and well-attended choir concerts: two with the Sing to Live Community Chorus and two with the Windy City Gay Chorus (part of Windy City Performing Arts).
  • Rejoined the board of my condo association after a couple year hiatus and took on the treasurer role.
  • Registered for the Chicago Half Marathon and worked with the folks at ACHA to establish our team: Captain Cardio's Pace Makers! (We're looking for runners and/or supporters, so you should think about joining and/or donating!)
  • Got an appointment to meet with my Congressman in early April as a follow-up to Lobby Day! (Representative Mike Quigley was not available to meet with me when I was in DC, but his staff have been great; and I was recently invited to meet with the Congressman in person in his district office.)
  • Wrapped up my current position and prepared to start my new job (still with the same great employer, but I made an important lateral move) on Monday morning!
  • Celebrated my 31st birthday (which was this past Thursday) with some wonderful family members and great friends.
  • Took my very first flying lesson. That's right! I actually flew a plan over Chicago's lakefront and Navy Pier this afternoon! It was a pretty incredible and surreal experience!

Just before my very first flight lesson!

It's been a really great month, and I'm now looking forward to the training and studying that are ahead of me. In the coming weeks, I will start officially training for the Chicago Half Marathon (which takes place on September 9th), and I plan to begin studying for the personal trainer certification test. So far, 31 has been treating me quite well, and I'm looking forward to the adventures that this coming year will bring!

Thursday, March 8, 2012

Reflections from a Lobby Day Newbie

My next post for the ACHA blog shares my reaction to CHD Lobby Day on March 1st.
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When I first heard about Lobby Day, I knew I wanted to go. But there was even more to it than that. Knowing that I could go made it even more important that I did go. Even as a newcomer approaching this Lobby Day with high expectations, I was certainly not disappointed. Not only did I meet some incredible people—fellow patients, parents, and staff and board members from ACHA and Mended Little Hearts—but I also had the opportunity to interact with some great Congressional staff members on behalf of the CHD community.

The night before Lobby Day, I attended the welcome reception and had the opportunity to talk with the father of a CHD patient; he and his wife have been coming to Lobby Day since the very beginning. As a newbie, I had to ask his thoughts on the tough question that kept nagging at me: “In this crazy town [Washington, DC] with so much going on and so many competing priorities, is our grassroots lobbying effort really making a difference?” He chuckled, knowingly, and gave me the answer I was hoping to hear: “Yes! It’s not easy and it takes consistent, ongoing work. But we have definitely made progress.” Little did I know at the time that the very next day—my first time lobbying on Capitol Hill for anything—I would already feel like I had made a difference and was having an impact.

Prior to attending our first formal meeting of the day, my fellow advocates from Illinois and I attended Senator Dick Durbin’s morning constituent coffee. As you may know, Senator Durbin is one of our champions, as he successfully supported the Congenital Heart Futures Act into law; and he is most definitely an advocate for the cause. When we met the Senator for our photo op, we introduced ourselves and told him why we were there. Before we could say another word, he enthusiastically thanked us and reminded us how important it was for us to be advocating for the CHD community. It was almost as if he were lobbying himself!

Left to Right: Ken Woodhouse, patient/advocate; Lena Morsch, patient/advocate;
Senator Dick Durbin; Betsy Peterson, founder, The Children's Heart Foundation;
William Foley, executive director, The Children's Heart Foundation -- March 1, 2012

My three formal Congressional meetings ran the gamut—from thanking Senator Durbin’s staff for their leadership and ongoing support of this important issue; to directly but delicately making our case to Senator Mark Kirk’s staff in the midst of the Senator’s own health issues; to a one-on-one meeting with Representative Mike Quigley’s legislative assistant, who unexpectedly shared her own very personal story and connection to CHD. It was right then and there that I realized my solo visit to Representative Quigley’s office may have had the biggest impact of my day. This staff member and I have exchanged a couple emails since that meeting, and she has invited me to stay in touch with her going forward on this important issue. In addition, she put me in touch with her colleague in the Representative’s district office, with whom I am also hoping to establish a relationship.

Capitol Hill can be an intimidating place. In the days leading up to my trip to Washington, I had to laugh when I read through some of our prep materials, which stated, “Being on Capital Hill is likely to remind you of everything that you love and hate about the current administration and policies.” As someone who studied public administration in grad school, I was well aware of this; and I’ll admit there was some truth to that statement. However, the positive energy that was present among my fellow CHD advocates that day—an energy I felt even during my solo Congressional meeting—provided the encouragement and motivation that was necessary to do what we went there to do.

I am grateful to the new friends that I made during my trip, not only for their impact on me personally, but also for their unwavering dedication to this cause. (You are all an inspiration!) Whether or not you were with us in Washington, I truly hope that you will continue to find ways to share your stories and make your voices heard. I believe that we have some great momentum going, but we’ve got to keep it up!