People have been asking us this since 2014 when our second daughter, Lorelei, was born with Down syndrome. Immediately after she was delivered, she was whisked away to our Children’s Hospital for surgery to repair a blocked intestine and she spent her first weeks of life in the NICU. In her first two years, Lorelei had more scary medical diagnoses, needed additional surgeries, hospital stays, and therapies. Though the bills were high ($120,000 for one stay!), we had good insurance and were covered. We were okay, so while I appreciated the many kind offers, I didn’t reach out for help.

In the spring of 2016 things were going pretty well for us, until I started to lose weight without trying and had several bouts of gastroenteritis. My doctor ordered an ultrasound, and in June of 2016 I was diagnosed with renal cancer.

My left kidney was removed, and though the recovery was rough, I was lucky that no chemo or radiation were necessary. Once again, kind offers of help poured in.

“If there is anything you need, please let us know.”

We had out of pocket expenses, but didn’t have to risk losing our home to pay for the surgery. I worried about leaving my children without a mother, but I got the life-saving medical care I needed. When I didn’t feel well, I could see the doctor and take necessary medication without worrying about the cost. We had good insurance and I could take care of myself; so while I appreciated the kind offers, I didn’t reach out for help.

In winter of 2017 we discovered that Lorelei had life-threatening third degree heart block and needed a pacemaker. As Lorelei faced heart surgery and our family again faced a “new normal,” more kind offers of help poured in.  

“If there is anything you need, please let us know.”

But Lorelei survived, and thanks to our insurance we didn’t worry about the cost of heart surgery or the hospital stay, we focused on her. She was going to be okay. So while I appreciated the kind offers, I didn’t reach out for help.

In winter of 2018, Lorelei developed a cough that would not subside. Her doctor sent us to the ER and she was admitted to the hospital and diagnosed with RSV. We celebrated her 4th birthday with nurses and doctors at her bedside. Fortunately, Lorelei recovered pretty quickly and we were able to go home in a few days. Until, two weeks later, she was back in the hospital with pneumonia. Again, our friends and family stood by us.

“If there is anything you need, please let us know.”

I no longer sleep well during cold and flu season (which in Ohio lasts from September to May), and this year I was diagnosed with a rare and incurable neurological disorder called Cervical Dystonia, which causes excruciating neck pain (and is exacerbated by stress). But, when Lorelei has a cough for more than a few days, she can go to the doctor. She can also see the other specialists, and get the therapy, hearing aids, and additional surgeries she needs. I can also get treatment for my pain and monitor my cancer, so I’m able to continue caring for my family and working full-time.

Woven in between all the frightening diagnoses and unexpected hospitalizations are moments of joy, fun, and laughter. We are blessed with an abundance of love and fortune. Lorelei and I have both been saved by medical science, wonderful doctors, and access to affordable and necessary health care coverage. We have bills, but for now, we can afford to pay them. We have been able to focus on our family and haven’t needed to ask for help.

Until now. The Affordable Care Act, which protects people with pre-existing conditions – like myself and Lorelei – from being denied or charged more for coverage, or even completely cut from care by a lifetime max, is under threat by the party in power. Programs like Medicaid and Medicare are targeted for drastic cuts. If we don’t do something, in the very near future, I could lose the ability to care for myself and my family.

I am letting you know I need your help.

I need you to vote for lawmakers who will ensure ALL people have affordable and appropriate health care coverage. Our story is not an exception; we’re all one accident or illness away from needing health care. While illness may not affect you today, it surely affects someone you love. It affects people I love.

I need you to vote because our lives depend on it.

I wish y’all could have seen my face when I was handed a megaphone, of all things. Actually, it may be better my reaction was mainly internal, because I can tell you I did not feel nearly as confident as my picture portrays.

After more than a year of calling and emailing both of my US Senators, with hardly any response, I felt pretty ineffective. I was sure people would want to know the human cost of their proposed Healthcare changes. It had to be a mistake that both Senators had repeatedly voted to repeal the Affordable Care Act. They must not know what it means for my girls, and millions of children like them, who would be in mortal danger from such an unstudied and hasty change. To be fair, I had never approached them with a constituent issue in the past. Honestly, I didn’t even know their names until early 2017. Still, I had no way to anticipate the apathy I was greeted with by Senators Burr and Tillis.

I felt bold when I accepted the request from Little Lobbyists co-founder Elena Hung to speak (gasp!) in front of people (gasp!) at a political rally (gasp!), but in the days leading up to the #StopKavanaugh rally in Atlanta, my courage evaporated. I was left with the feeling that we all experience when asked to speak in public – all kinds of scary scenarios ran in a loop in my head. What if I fall over? Has anyone ever barfed at one of these things? Fainting seemed like a real possibility.

In the car, I poured over my carefully written remarks and practiced the purposefully placed pauses to my family, who listened in hopeful support. Together, we navigated through downtown Atlanta in our matching Little Lobbyists t-shirts and marched to the rally site. As I watched the three speakers ahead of me, I already felt the support of the crowd. This was a safe space filled with like-minded, active citizens who were angry about what we’re seeing come from our legislators. The unrest was pointed away from me, aiming straight for Washington DC.

Megaphone aside, when I spoke my first words, “My name is Stacy. I also answer to ‘Mom’, ‘Mommy’ and <ASL sign for ‘Mom’>…” I knew the crowd was already on my side and full of encouragement. I continued to tell the story of my beautiful twin toddlers, former micro-preemies who have fought every minute of their five years on this earth to stay with us. My voice broke as I shared snip-its from the early days in the NICU, when my willpower and determined stare were not enough to bring up oxygen saturation. The helpless feeling we have when the monitors are blaring and nurses move swiftly to intervene. I did my best to convey the impossible fragility of a 2lb newborn that has more wires than skin. When I waivered, I felt hands on my shoulder. I heard calls of encouragement from the crowd. I looked into the sea of faces and I saw genuine concern. Not just for our plight, but for the ongoing threat to their lives from a political party bent on undoing the accomplishments of the prior administration.  

I ended my speech by asking for help. Beyond outrage, we need action. We need concerted efforts and relentless outreach to our legislators.  Every day and twice on Sunday, we need calls, office visits, tweets and signs of protest to keep these critical issues top-of-mind. In April, I promised myself I would do at least one thing each day toward the goals of voter registration and story sharing. I see my daughters faces’ in the daily pictures of “100 Little Lobbyists Who Need You to Be a Health Care Voter” series we are sharing on social media.  

I am a newly minted parent activist and I know there are more of us out there. I know you’re angry and worried about what’s happening. You want to get involved, but you’re constantly exhausted and a little unsure about how to take the next step. Recent weeks have been especially difficult for us. We have witnessed conduct that would have been unthinkable until it all unfolded on our televisions. It would make perfect sense to recoil in despair.  

But consider this: What if we continue to speak up? What if our actions become stronger than our fears? What can we accomplish if we keep going? Just like we have done with our children and their medical teams, we can continue to advocate for them to reach their highest potential. I can help you. You can help me. We can do this together! Who’s with me?

Finding my voice with the Little Lobbyists.

I know a lot of people say they don’t like to “talk politics.” I was once one of them. I was informed, I cared, and I voted, but talking about politics just seemed too icky.

So I surprised myself a little when I decided to begin visibly and vocally engaging in politics. Aside from a term on middle school student council (one year as president, thankyouverymuch), it wasn’t something I saw in my future. I’m a graphic designer who loves helping people communicate but doesn’t particularly like conflict. I design, teach, and try to help create a more beautiful world, work which has always fulfilled me.  

Until, suddenly, it didn’t seem like enough. A little over a year ago, the political powers-that-be began to overtly threaten my disabled son Simon’s health care, education, and civil rights. Our country had changed in a scary way. I lost the privilege of sitting on the sidelines believing everything would be “okay.” A privilege I’m sorry to say I’d taken for granted the previous 8 years.

I do have some prior experience diving headfirst into dark water, ever since a doctor told me there was something “very wrong” with my baby's brain. Any parent of a medically complex child could tell you some variation of the same story: their baby was sick and the pediatrician couldn’t help, so they sought out specialist after expert specialist. Farther and deeper they searched until they found someone with answers. Perhaps, like me, they even found themselves plunging into previously unfathomable depths (shout out to NIH Undiagnosed Diseases Network!). But ultimately, on this voyage we each discover that there’s no one better than ourselves to navigate these unchartered waters with our children.

One day you realize the expert you’ve been waiting for is you.

You read the wonky medical journals and memorize the vocabulary. You even train the residents about your child's conditions (OMG so YOUNG!). You learn how to separate fact from BS and you refine your advocacy – polite but very firm – until you have just enough fire glinting in your eyes for folks to know not to cross you. You will get what your child needs whatever it takes.

It turns out those skills are exactly what you need to be an effective political activist.

Instead of medical journals, you read equally wonky policy articles and memorize some new vocabulary (bad news: still lots of acronyms, good news: less Latin!). You train staffers (OMG why are they all so young?), separate fact from BS, and advocate with the same firm, fiery, politeness. You will get what your child needs whatever it takes.

It also turns out that both physicians and politicians are just people you need to communicate with.

Sometimes the communication is icky. Some people can’t, or won’t, help you. Some will lie to you. Others will tell you like it is, but admit they don’t actually care much.

But, sometimes, it isn’t.

Sometimes, people will listen, tell you like it is, care, and help you. You’ll see the fire in your eyes reflected in their own. You’ll learn they’ve been fighting for you all along and it’s stories like yours that inspire them.

Our stories are powerful. These are our truths which we hold to be self-evident. The love of a parent for a child; of an American for justice, freedom, and equality. It’s not a perfect union, but a work in progress we must all participate in.

Sometimes, people cry with you. The first Senator I visited, Debbie Stabenow from Michigan, had tears in her eyes as she took my hand to tell me she was so happy to meet us, but so sorry we were there because our government is threatening our vulnerable children.

Meeting Senator Stabenow (Simon requested snacks... fortunately she had lots of Kellogg's cereal on hand! Did you know Kellogg was based in Michigan?)

Sometimes, people race to be at your side, the way Senator Wyden ran to meet us the cold, rainy night of the “People’s Filibuster” of the GOP Tax Bill.

Senator Wyden talking about the impression our kids with complex medical needs made on him at the night time People's Fillibuster. He was very kind and very, very tall.

Sometimes, people give you hope. I’ll never forget shaking Senator McCain’s hand and thanking him for his vote against the repeal of our health care. His face was bruised from battling cancer but his gaze was strong and steady as he told us he cared about us. He said he prays for our families every day, and we pray for him and his.

My husband Brian shaking hands with Senator McCain. This is Brian's "wow" face. Because, wow. Also, it was Halloween and we went trick-or-treating in the Senate (as one does) and that is a giant seahorse costume we made for Simon's wheelchair. He was Aquaman. I don't always wear a Wonder Woman crown, just as needed. I'm thinking about keeping it in my handbag...

Sometimes, people embrace you. Senators Schumer, Casey, Booker, Warren, Duckworth, Harris, Bennet, Cortez Masto, Hirono, Murray, Reed, Kaine, Murphy, Hassan (whose own son has cerebral palsy just like mine), Warner, Van Hollen, Cardin, Schatz, Baldwin, Gillibrand...have literally embraced our kids. (If you noticed a blue tint… well, friends, unfortunately that’s just how it is right now. Though not from lack of effort on our part, I promise. Yes, we will keep trying.) These legislators fight for our “Little Lobbyists” because as constituents they are their children, too.

Senators Warren and Duckworth meeting some of the Little Lobbyists. So much love and so much cuteness right there.

Senator Murray invited us to visit for the holidays. I loved learning that she started her political career as a "mom in tennis shoes" advocating for education as a preschool teacher. The kids loved the candy canes. (If you look closely by my feet -- I'm the gal in the Santa hat -- you'll see Simon lying on the floor. He had a small seizure while taking this photo. One second after saying "cheese" his service dog Tigger brought me his meds and we treated him right there, on the floor of a Senate office. We Little Lobbyists keep it real!)

Sometimes, people empower you. Leader Pelosi has invited me and many other parents to tell our stories at her press conferences. She carried our children’s names with her into the House of Representatives. My family’s story is now part of the permanent Congressional record. She even warned her colleagues not to “trip on Simon’s wheelchair” as they try to get between a special needs mother and the care her child requires. That’s on the record, too.

Just a mom giving a speech in the Capitol at Leader Pelosi's press conference. You can watch my speech here.

Leader Pelosi needed no explanation, premise, or pitch when it came to protecting our kids. She’s championed our children with complex medical needs and disabilities in every way she can. She’s a mother and a grandmother. To me, she demonstrates the impact of women in office -- they understand and vote for what our families need. Leader Pelosi knows our children and they know her, not as a political powerhouse, just as one more badass mama who loves them and protects them.

Leader Pelosi thanking my daughter Olivia for being a great big sister and standing up for what she believes in. Yes I am crying, you would too.

Leader Pelosi getting a hug from Little Lobbyist Charlie. No, our kids could not be any cuter.

So, to all my fellow badass mamas (and papas) of kids with complex medical needs and disabilities who are already fighting and wondering what more they can possibly do, I see you. I know you’re the captain of a ship on choppy seas, made worse by the tempest our government’s created. It is terrifying to think of weathering this storm alone. So don’t.

There’s a light in this lighthouse and people who will row to shore with you. Just one year ago, we came together as Little Lobbyists, and we’re continuing to grow our fleet. Families like ours are all over this country – connecting, calling, writing, showing up. We learn, share, and communicate with each other and our legislators so our children will have the more just and beautiful future they deserve.

You already have all the skills you need. You’re the one we’ve been waiting for. Join us.

Some of our Virginia Little Lobbyists families meeting with Senator Tim Kaine.

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There are many ways to support Little Lobbyists and get involved!

If you are the parent or guardian of a child with complex medical needs and/or disabilities, share your story with us here. If you would like to learn more and stay in touch, connect with us here. If you would like to donate to help us continue our work, please click here.

Thank you!