I’m conservative on some things and less on others. A true swing voter, a moderate. A Republican was as likely to get my vote as a Democrat —dependent on their voting history on issues important to me. Historically, I leaned more Republican than Democrat until last year, when the Affordable Care Act (ACA) came under fire and I became terrified that my son might lose the health care vital to his survival.

My son Jack is 7 and has a fatal genetic disease called Cystic Fibrosis. This disease is scary, profoundly expensive (just one of the 14 medications he needs to survive is $1,200 per month), excluded from life insurance policies, and fatal.

When Jack was born the full protection for pre-existing conditions provided by the ACA wasn’t yet in place. When he contracted MRSA (a very scary infection), I used up all my vacation time and FMLA to care for him and faced losing a job I’d held for 10 years, knowing my son’s disease made him largely uninsurable. I was terrified that if I lost my job, I’d also lose my son.

Fortunately, I was lucky. The CEO of the huge company I worked for had a heart. He learned of my dilemma and allowed me to work from home. What a relief that was! For 3 months I worked from home, feeling more secure, but still terrified. I’d experienced exactly how quickly my son could go from having all he needs – to having nothing at all. It wasn’t until the full protection of the ACA took effect in January of 2014 that I felt safe. For the first time since Jack was born insurance companies couldn’t discriminate against him by withholding coverage.

Others weren’t as lucky as I was. Their CEO didn’t save their job, their child was born, and died, before the ACA. In the history of health insurance in this country those of us with pre-existing conditions have only experienced 4 years of guaranteed coverage, and we’re already standing on the edge of losing it.

I am a mom fighting for her son’s right to live his healthiest life.

I speak from experience. I’m not a person raging from behind the safety of a keyboard, I’m not a person whose feelings are hurt easily, and I don’t make assumptions. I do speak in person with my politicians at every opportunity, and I actively seek those opportunities out. I educate myself before making any political decision (or post).

No candidate who voted yes on the Tax Bill that weakened that ACA or in favor of short-term “junk” insurance will get my vote. I am a #HealthCareVoter, my son Jack is a #LittleLobbyists, and Jennifer Wexton will get my vote over Representative Barbara Comstock, because Comstock has proven to me that she won’t protect us and she failed my son with her votes.

Many Republicans I’ve spoken with have argued that the Tillis Bill is the GOP’s answer to protecting pre-existing conditions. This is a half truth, at best. While the bill does prevent insurance companies from excluding people with pre-existing conditions all together, it does NOT require insurers to provide coverage for their pre-existing condition – or prevent their premiums from being far more expensive.

I used to be a swing voter that leaned Republican. But, now that the Republican Party has reduced rare disease tax credits, is not protecting people with pre-existing conditions, and moved (in my opinion) far too quickly on a decision about a lifetime Supreme Court Justice who could determine the future of health care in this country... the GOP has single handedly forced me to move steadily and solidly to the left.

My family is a working, lower middle-class family, with a Federal health insurance plan. Between now and December we will work hard to pay all of our 2018 medical costs, because typically by February 1, 2019 we will owe $9,000 again.

We participate in grants and medication coupons to help us, but because of the new accumulators payors introduced this year (our insurance is one of them) which don’t count coupons and grants towards our deductible or out of pocket max, we’re likely going to owe even more next year. Meanwhile the insurance company will receive our deductible twice – once from our coupons and grants, then again from us directly.

This week I started selling our things on Facebook to help cover our medical bills, which is normal for many families dealing with expensive illnesses, but was somewhat shocking to many of my friends who reached out with offers of help and crowd-funding.

While the offers were sweet, we respectfully declined. Crowd-funding Jack’s medical needs is not sustainable. Unless health care in our country changes, these expenses will continue to build for the duration of Jack’s life. The single biggest thing you can do to truly help families like mine, is VOTE for candidates who will protect access to affordable health care for everyone who needs 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?

The author and his sister, Little Lobbyists Ben and Claire Smith

Best Friend on Wheels shaped me because it taught me that it is okay to have a sister with a major disability. Before I read this book, I thought it was not okay to have a sister with a disability. Although I am ashamed to admit it now, I was embarrassed by my older sister Claire who has a microduplication of chromosome two, uses a wheelchair, is autistic, and has many other medical issues.

You may ask how did this book teach me that it was okay to have Claire as my sister? Best Friend on Wheels taught me this because it is a book about a girl with a similar disability.  At the beginning of the book Sarah, a girl with a disability, rolls into the classroom and a girl stares at her wheelchair but does not look at Sarah. At first, she looks away, embarrassed that she might say something wrong and hurt Sarah’s feelings. This is like when I was younger and I always stared at Claire’s wheelchair and thought that she would not be able to play with me. Now I am ten and I think of Claire’s wheelchair as a neat accessory like a piece of jewelry rather than as something that makes her different.

A lot of people stare at Claire when we walk to a toy store in our neighborhood and think that she cannot communicate what she wants. This reminds me of a part of Best Friend on Wheels when Sarah and her friend go to get ice cream and the lady at the counter asks Sarah’s friend what would she like thinking that because Sarah has a disability she cannot talk. Although my sister cannot talk, she can point and let us know which toy she wants that way, but people do not always give her the chance to do so.

Best Friend on Wheels showed me that people underestimate kids with disabilities all the time, not just my sister, and that I had to speak up for my sister so that people would realize what she is capable of. I’ve continued to do this by going to Capitol Hill and rallies to speak up for kids with disabilities and will do so for the rest of my life.

When the girl in Best Friend on Wheels becomes friends with Sarah, it is not because she feels bad for her for being in a wheelchair, but because of her pins showing that she is a “ROCKHOUND.” This may seem unimportant, but it is very important because it shows that people with disabilities can like the same things as people who do not have disabilities. The girl in the book did not notice Sarah’s pins at first because she was too busy staring at Sarah's wheelchair. When she does look beyond Sarah’s wheelchair she realizes they both collect rocks and have a lot of other things in common too. This showed me that people with and without disabilities can have a lot in common if they just take the time to talk to each other, even if what they have in common is just watching movies or reading books.

Best Friend on Wheels taught me that it is okay to have a sister with a major disability because it showed me that a person with a disability can do everything people without disabilities can do too. Just like the two friends in the book, I have learned that I can do everything with my sister Claire that my friends can do with their siblings. We enjoy going to amusement parks, eating ice cream together, swimming, and playing games.

Thanks to Best Friend on Wheels I stopped being embarrassed that my sister had disabilities and realized how much fun I could have with her. Now she is one my best friends. I am so glad I am not missing out on having so much fun with her just because of her wheelchair.

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Ben's essay was a finalist in the Library of Congress' 'A Book That Shaped Me" contest. He was recognized for this accomplishment at the National Book Festival in Washington, DC on September 1, 2018

Click here for a link to where you can purchase the book, Best Friend on Wheels by Debra Shirley.

This Sunday, I’ll be celebrating Father’s Day as a dad for the eighth time. My first one was pretty easy albeit uneventful, “uneventful” later becoming an eternal goal in our lives. My daughter Penny was born in the spring of 2011, and for the first three months of her life, she exhibited all the signs of a healthy baby girl.  

That’s when she started doing this thing with her arm. That’s what we called it, an odd, repetitive motion. We brought her to her pediatrician, explaining that she kept doing “this thing.” He observed her, and within a minute, Penny did it again. He instantly instructed us to take her to the emergency room at Cornell Medical Center, explaining that she was having partial seizures. Within 48 hours I no longer had a healthy baby girl. I had a daughter with Aicardi Syndrome; a severe developmental disability that only impacts girls. It includes epilepsy, intellectual disability (severe in Penny’s case), physical disabilities (also severe with Penny), and communicative difficulties. Penny cannot talk or willfully communicate aside from a whine when she’s unhappy, a squeal when she’s happy, and occasionally tapping the table when she wants an object.  

It’s still remarkable to reflect on how the life that I had envisioned for myself and for Penny had been obliterated and replaced with a different one, one far scarier and more uncertain, in the space of a couple of days. Even scarier was how isolating it felt to have a daughter with an illness so rare you could potentially go years without meeting another person affected. My first big break was finding a support group for parents of Aicardi children online. The feeling of belonging and support got me through those first months. It wasn’t only people helping each other and it wasn’t just the moral support, both of which were huge. It was the pictures I saw and stories I read about families having fun with their daughters – the girls getting to enjoy beautiful experiences in their communities, out in nature, on road trips, and in school. I read dispatches from normal life, people simply talking about “normal” stuff, like going to the movies and out to dinner.  

Something that was rare in the group (though certainly not absent) were posts by dads. I don’t know exactly why dads are less likely to participate in such groups – if it’s simply not one’s thing, great – but I’ve spoken to some dads who claim they don’t feel it’s meant for them. They feel intimidated by how overwhelmingly female such groups sometimes are, or are embarrassed. It is not, however, because they are less interested. I have come to know some of the most spectacular special needs dads that I could ever meet. I’ve known dads to build entire rooms to accommodate their kids, convert a van themselves, carry a 60-pound daughter miles through the hilly woods because she loves it, change jobs and move the family cross country for better services for their children, and create enough adaptable devices (and Halloween costumes!) to earn an engineering degree.  

There’s been a lot written about how special needs dads can be overlooked or are more likely to be silent about their child, so I want to dedicate this Father’s Day to all the special needs dads who are pouring their heart into their kids. I don’t know if I would have even thought to do all I do with my kids without your inspiration. I thank you for that. And thank you from the entire special needs community for doing more than most people even know is possible.   

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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!

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!