3/7/2012 2:44 PM
By Kim Edgren
I almost didn’t make it to Congenital Heart Lobby Day. I decided at the last minute to go (boy are flights expensive when you book them two days in advance!); my mother-in-law ended up in the hospital; and my flight almost didn’t happen because of “severe” weather. But, I made it to D.C. There were many great highlights—the wonderful reception at the Heart House, meeting with my Massachusetts Senate and House aides, and of course navigating the buildings and standing in the security lines. But what really stuck with me, and often does in my life, are the people involved in Lobby Day and their stories.
My Massachusetts lobbying partner was a doctor from Children’s Hospital Boston. She had lobbied before and was a great teacher. And her professional work was fascinating to learn about. I didn’t know half of the organizations she works with that make up so many aspects of our care in the CHD community. I realized how much goes on behind the scenes—the devices, the quality assurance, the sharing of knowledge—which we are not aware of and take for granted. I found myself making a list of the acronyms she used so I could learn about all the organizations they stand for and what they do to help us keep on keeping on!
Meeting the ACHA folks was a bonus of the day for me. In the world of electronic communications, we often spend a great deal of time e-mailing or messaging, but never really connecting. Having the opportunity to put the faces with the names was wonderful. Amy, Terri, Jen and Paula, I loved meeting you and am blessed to have your energy and know-how working for all of us! It is because of you we have a voice in D.C. and around the country. Thank you!
Finally, the group of ladies from Mended Little Hearts in Virginia. Our paths crossed a couple times, but down in the bowels of the Senate buildings, as I faced a meeting with my not-so-supportive Republican Senator alone, they took me under their wing. I got to hear some of their stories and see their passion for fighting for this cause that directly affects their families. I realized that as much as they were fighting for their children—those surviving their defects and those who had not—it was that very same reason I was there too. As much as I want to have many more years of my life, it is the lives of my children I want to experience. I want to see all of it—just as much as they want to see their children’s lives flourish.
So, bumpy flight, security, unbelievably long walks and Senators who aren’t on board, bring it on! From birth to death, every CHDer needs a voice to fight for research, surveillance and awareness. Because if we don’t, who will?
Kim Edgren was born in 1966 with transposition of the great arteries, pulmonary stenosis and ventricular septal defect. She recently became the proud owner of a Melody valve! When she is not trying her hand at writing she is busy spending time with her partner and three girls, managing her two child care centers and planning her next vacation.