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.
I have been surrounded by parents who know what it's like to feel completely helpless as you watch your child fight for her life;
To hand over your baby to a surgeon, moments after signing consent forms detailing the worst case scenarios;
To sleep in an uncomfortable hospital chair night after night after night;
To completely fill your calendar with your kid's medical appointments and therapy sessions;
To get back up again after falling apart, over and over;
To be a little too familiar with 911 calls, ambulance rides, and emergency room visits;
To celebrate the 'inchstones' that no one ever thinks about, like your child breathing without the help of a ventilator for 30 minutes or your 3-year-old learning to eat by mouth.
I have been surrounded by parents who know what it's like to drown in the loneliness, day after day.
Like I have been doing for weeks, I spent all day Thursday on Capitol Hill visiting senate offices with a binder full of stories of children just like my daughter. At the end of the day, I inhaled a terrible dinner and rushed to a MoveOn rally where I listened to story after story from people just like me, and heard senator after senator promising to fight tooth and nail for all of us. And then I stood with my Little Lobbyists family next to me, as I took my turn at the mic, to tell everyone why we needed to keep sharing our stories.
When the vote was announced later that night, I felt relief more than anything. Though I know this fight is not over, I felt relief that we were safe for now. And relief that my daughter would continue to receive the medical care and services that will allow her to survive and thrive and be a kid.
I stayed late at the Capitol that night with my friend Michelle and my 3-year-old daughter Xiomara, thinking of all the stories I had heard. The crowd had all gone home; it was quiet and near empty and almost 4 a.m.
At this weekend's Our Lives on the Line rally, I got to meet and hug Ali Ranger, an amazing mama fighting for her kid, and my kid, and all kids. I got to tell Natalie Weaver, who is as kind as she is fierce, that she inspired me to share my story publicly. I got to hear Democratic Leader Nancy Pelosi thank the Little Lobbyists from the stage for sharing our stories.
We marched to the White House after the rally, alongside hundreds and hundreds of people who believe what I believe: that healthcare is a human right.
For the past six weeks or so, I didn't feel lonely at all. Not one bit. I didn't feel lonely in the halls of senate office buildings, or at the rallies, or at the Capitol at 4 o'clock in the morning. I have been surrounded by the love and strength of families who have walked in my shoes and felt my fear and shared my hopes.
To the parents hearing that diagnosis for the first time right now, and to the parents who are feeling lonely like I once did, I say to you: there is an army of parents just like you on this island. We understand.
And, we can't wait to hear your story.
Speak up, my friends. Your voice matters. Your story matters.
Reprinted with permission from the Little Lobbyists.