On March 1 I attended Lobby Day hosted by ACHA and Mended Little Hearts in Washington, D.C. It was an amazing experience. This was my first Lobby Day and I was not sure what to expect. To be honest, I was a little hesitant to go because it was super early in the morning—7 a.m. in D.C. traffic is awful—and I am a terrible public speaker.
I actually worked the night before so I went home, slept for three hours, changed my clothes and jumped back into the car at 5 a.m. and drove the 45 minutes down to D.C. When I got there I met many amazing people from all over the country with incredible stories. When I think CHD I think, well—me. I am CHD and I have not ever really met anyone else with my “problems” unless you count the looks you exchange with other patients at your cardiology appointments. At Lobby Day I met people who had loved ones who died, who were diagnosed at birth, and who were diagnosed much later in life. It was amazing to see the many ways that CHD affects people.
Along with meeting these incredible individuals, I met a few nice doctors, too. Attendees of this event were split into group according to state, so I was with a few other people from Maryland. My group consisted of two cardiologists, two mothers who have children with CHD and a young lady who is my age with one of the same CHD issues as me! We both were born with TGA and turns out we only live 15 minutes away from each other. Each group went to the Hill and met with Senators, Representatives, and their aides and lobbied for renewed funding and continued research, and to have Representatives join the Congenital Heart Caucus.
Lobby Day allowed me to share my story, my triumphs and my fears with our leaders. I let them know that my life—our lives—depends on this research. Congenital heart defects are the No. 1 birth defect in the country. America is counting on this research. We are counting on this research to create evidence-based practice. We are counting on more time to make stories, to have triumphs and to overcome our fears. We deserve more time. More time to make new friends—just like I did—and more time to enjoy our favorite things. One of my favorite things lately has been making this great granola, which is easy to keep in a baggie and fueled me though Lobby Day!
Jen's Lobby Day Granola
2 cups old fashioned oats
1 cup shredded sweetened coconut
2 cups roughly chopped shelled pistachios
4 tablespoons I Can't Believe It's Not Butter! Light
⅔ cup honey
¼ cup brown sugar
1 ½ teaspoons vanilla extract
½ cup chopped dried cherries
- Preheat oven to 350 degrees.
- Line baking sheet with parchment paper, then set aside.
- Toss the oatmeal and coconut together and bake in a 350 degree oven for 12 minutes, tossing it halfway through cooking.
- Remove the oatmeal from the oven and reduce the temperature to 300 degrees.
- Place the butter, honey, brown sugar, vanilla into a saucepan.
- Bring butter mixture to a boil over medium heat. Boil for 1 minute.
- Toss the pistachios, cherries, and cranberries together with the oatmeal mixture.
- Pour the hot honey mixture over all and stir to mix well. Press the mixture into the baking sheet. You might want to use the base of a metal measuring cup to compact it.
- Bake at 300 degrees for 25 minutes.
- Cool completely before cutting into 30 even squares.
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