The Moment We Realized People Were Listening

From the Little Lobbyists: Advocating for kids with complex medical needs by changing hearts and minds on Capitol Hill

When you spend day after day walking the halls of the Senate Office Buildings, telling your stories and those of other families like yours, you spend a lot of time wondering if anybody is listening, if anything you're doing is making a difference. There's a lot of self-doubt in putting yourself out there: is there any point in speaking up? Is putting our children in the public eye really worth it?

We had meeting after meeting and went into one office after another. We told our stories with sympathetic staffers; we met people who nodded at all the right times and who told us they cared about our children. We spoke with the press and told our stories at rallies and press conferences. We shared stories on Twitter, and watched the retweets and likes pour in. And yet, in spite of it all, several weeks in, we found ourselves wondering, "Is anybody listening? Is all of this effort making any difference at all?"

We had been keeping careful track of our office visits. We have a spreadsheet and pages of color-coded notes. We knew who we had visited, in which offices we were able to meet with a staffer, who the staffer was, and whether or not we had followed up. We were also keeping track of the senators we had met. A few of them we wrote in parentheses, because they were chance hallway encounters, and we didn't figure that really "counted."

Keep reading... Show less
Photo courtesy of Carrie Collins

This Island

Being a parent of a medically complex child is a terribly isolating experience. It is lonely as lonely gets. The moment you hear that initial diagnosis, you are instantly transported to a tiny island. Population: you.

Last month, in a moment of hope and desperation, my friend Michelle and I decided to take our kids to Capitol Hill so senators could see the faces of those who would be affected by their votes on healthcare. We wanted them to know our kids and see that kids with trachs and feeding tubes and rare syndromes and medical records a mile long are just kids…who need healthcare.

We asked families like ours across the country to share their stories, and we offered to hand deliver them to their senators.

And share, they did.

For the past six weeks or so, I have been surrounded by parents just. like. me. Parents who really understand and just get it.

Keep reading... Show less

I Chose Life

I chose life.

I chose life when my husband and I planned to have a baby.

I chose life when we celebrated the two little lines on the pregnancy test.

I chose life when I started to eat healthier, took my prenatal vitamins everyday, and eagerly attended every appointment with my midwife.

I chose life at my 20 week ultrasound, when the doctor referred me to a maternal fetal specialist.

I chose life when the maternal fetal specialist said something was not quite right with my baby's heart.

I chose life when we met with the genetics counselor, who used words like "abnormal" and "atypical" and "syndrome" and "termination."

I chose life when I was labeled "high-risk" and scheduled for weekly monitoring.

Keep reading... Show less


Get AmpliFire News in your inbox

Find an event near you!