Healthcare

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."


One of those chance encounters was Senator Jack Reed, from Rhode Island. On our first day on Capitol Hill, our two families were in the Senate Democrat media center recording our story for #AmericaSpeaksOut. Senator Reed came in while we were there. He came up to us, greeted us, greeted our kids ("Hi, I'm Jack!"), he asked about our kids, and we told him a little bit about our stories and what we were doing. We showed him our binder. But because it was only a chance encounter and not a planned meeting, and because we didn't have any stories from families in Rhode Island to share with the senator (yet), we wrote his name in parentheses on our list, figuring it didn't count as a "real" meeting.

A month later, we stopped by Senator Reed's office. His staffers recognized our children Timmy and Xiomara and said to us, "You met the Senator, didn't you? About a month ago? He kept talking about meeting you, and he spoke about your kids on the Senate floor the next day."

We dropped off some materials, thanked them, and left. We piled our kids into an elevator down the hall (no easy feat!) and were about to head downstairs when one of Senator Reed's staffers ran down the hall. "The Senator just came back," she said, "and we told him you stopped by. He wants to see you." And so we headed back–he did, indeed, remember us. We chatted with the Senator for a few minutes; he asked about each one of our children; we thanked him for his support; he thanked us for sharing our stories.

That evening, we went home and searched on YouTube for Senator Reed's Senate floor speech from the day after our initial encounter. And sure enough, he did talk about our children. A chance encounter, a meeting we thought was so inconsequential that we were writing it in parentheses, and a U.S. Senator told our stories on the floor of the Senate.

That's when we realized that people are listening. That's when we realized that when you tell your story, you never know where it will end up, or what the impact will be. And that's when we truly began to understand the importance of what we are doing and the power of stories.

Senators Collins and Murkowski have both spoken about stories they've heard from their constituents and the impact those stories have had on them. We have heard on multiple occasions the impact our stories have had, and we have seen that a personal story has the power to influence a national debate.

And that is why we keep saying, "Speak up. Share your story. Your voice matters." Because your voice does matter. Your story matters. And when you send your story out into the world, you never know where it will end up or the power that it will have.