As I watch my daughter climb on and wrestle with her big brother, I remember the daily, intensive physical therapy that consumed our days.
As I hear her call out “Ready to go, Mommy!” I remember thinking that she wouldn’t be speaking for several more years because of her developmental delays.
As I schedule her doctor’s appointments six months out, I remember how those appointments used to be on a weekly basis for a really long time.
As I celebrate one milestone after another, and marvel at all that I once believed was impossible, I count my blessings for our access to quality, affordable health care.
My daughter Xiomara is a typical 3-year old in so many ways. She goes to school and loves the playground. She likes to read books and watch Sesame Street. She is funny and smart and kind — and a little bit naughty.
And she is not typical in so many other ways. She spent the first five months of her life in the Intensive Care Unit. Xiomara depends on a tracheostomy and a ventilator for breathing support — she receives all of her nutrition through a feeding tube, and she has an extensive medical history that includes over a dozen specialists, countless medical procedures and several hospitalizations.
I know my family is not alone. There are children with complex medical needs all across the country. And there are parents like me who advocate for them daily to ensure that they receive the medical care and services they need to survive and thrive. This year, my advocacy took a different turn as I dove right into the world of political activism and health care policy.
The bills that were rushed through Congress this summer — secret plans drawn up behind closed doors with new versions released in the dark of night, all without the benefit of public committee hearings — threatened the protections that I and so many families like mine depend on.
In a moment of hope and desperation, a group of families and I responded with an effort to put a face to those who would be harmed by these proposals. We brought our children with us to Capitol Hill and hand-delivered hundreds of stories about kids with complex medical needs from across the country to their senators’ offices. We wanted to illustrate what is possible with medical care — and what was at stake with these proposed bills.
The Little Lobbyists and I were present on Capitol Hill, week after week, month after month, to plead our case and to demand that our children’s care be protected. I wanted legislators and staffers to meet my daughter.
You see, when you have spent as much time in hospitals watching your kid fight for her life as I have, you don’t just sit still and do nothing. You don’t stay quiet and hope for the best. You don’t trust someone else who knows nothing about this life of ours to take care of things. Parents like me, we fight for our kids. That’s what we do.
Xiomara is thriving right now, but the only way that happens for her and kids like her is through protections in the current health care laws — specifically, the Affordable Care Act (ACA) and Medicaid. Time and time again, legislation that would harm our children has been proposed, most recently in the Senate tax bill, which ties ending the ACA’s insurance mandate to cutting corporate taxes, ensuring that millions will lose health care coverage so the rich can get richer.
Time and time again, we have fought back, and we will continue to do so. Legislators need to remember that they work for us, and we will hold them accountable. Families like mine depend on the health coverage provided under the ACA and Medicaid, and we depend on elected officials to protect and expand our access to quality, affordable health care. As their constituents and as health care voters (healthcarevoter.org), we have an obligation to hold our representatives accountable for the votes they took and still may take to repeal and sabotage our health care.
Members of Congress, let’s work together. Let’s find common ground based on our desire to watch our children grow up. Let’s sit down and talk. Let me share my daughter’s story with you, and the stories of children like her who live in your state. Meet our kids and think of them when you vote. Our children deserve that.
And know that if you don’t, we will hold you accountable.
Elena Hung, President and Co-founder of Little Lobbyists (littlelobbyists.org); Twitter: @LittleLobbyists.