The battle over health care (March 23)
As Congress prepares to vote on the horrible Republican bill to “repeal and replace” the Affordable Care Act it seems like a good time to tell Lucas’s story again in the context of health care reform. You see, back in 2009 when Lucas was in the NICU after being born two months early, we took a crash course in the failures of the American health care system right as Congress was debating what would become known as Obamacare. It was kind of surreal – we were living in Washington DC, the Tea Party was on the rise and rallying against what they called “socialism” (if only!), Democrats were watering down what was an already insufficient health care reform bill… and Lucas’s future as a medically fragile baby without a diagnosis was very much in flux. But there was one thing we knew for sure at that point: our family was going to be all-too dependent on doctors, hospitals and the insurance industry going forward, and the system we were already immersed in desperately needed to be improved.
We had a lot of time on our hands to ponder and write about what was going on — back then we used to publish multiple blog posts every week, sometimes every day. One of them that I recently re-read was called Hating the health insurance industry in which we explained in exhaustive detail the hoops we were having to jump through to get Lucas the care he needed, concluding with this paragraph:
And of course we’ll work not just to benefit Lucas, but also advocate for a health care system in this country that takes care of everyone’s needs. And we’ll dream of the day when we can take “Resistencia” T-shirts to all of Lucas’s doctors and they’ll get excited about the idea of hitting the streets to expand a vibrant, holistic, high-quality public health care system. And we’ll dream of Lucas out there will his fist raised too.
We’ve done our best to keep our commitment to the struggle for healthcare for all, and in the seven and a half years since we wrote those lines he’s been in the streets with us at dozens of demonstrations, including a rally in downtown Seattle on a cold day this past January alongside thousands of people demanding that the ACA be preserved.
In March, 2010 when Obamacare finally became law, we wrote about the ways in which it was immediately going to benefit Lucas and our family (even as we lamented how the bill should have gone further.) In particular, we celebrated the provisions which eliminated lifetime insurance caps and made it illegal for insurance companies to deny coverage to children with pre-existing conditions. We also recognized that the expansion of Medicaid was likely to benefit many poor families and people with disabilities, in particular families of kids with disabilities who didn’t have the same level of financial security that we were fortunate to have.
In the years to follow, millions of people got health care coverage that literally saved lives and made it possible to live with less hardship and constant worry about getting sick. And now they want to take all of that away– not only bring the country back to where we were before Obamacare, but makes things markedly worse.
In 2012 we were asked to be part of a story about the anniversary of the ACA, and Lucas was subsequently featured twice in the Seattle Times, including in a front page picture and story. In a way, Lucas became a poster-child for the successes of Obamacare, and we’ve tried to tell his story in ways that would illuminate the cruelty of Republican attempts to do away with the progress that has been made. Recently the Trump White House asked for Obamacare failure stories and instead thousands of people posted their stories of how it had benefited them, including this one that I submitted:
My son Lucas is quite possibly alive today because of Obamacare. He was born with a severe neuromuscular disease in 2009 right around the time that the ACA was being debated. When it went into law, provisions that prevented insurance companies from excluding people with pre-existing conditions and prevented lifetime caps allowed us to have health insurance so that my son’s complex needs could be cared for. Like tens of millions of other Americans, we are grateful for Obamacare, and if you take it away you should know that you are threatening the lives of kids like Lucas. Don’t do it!
Now, they are preparing the vote on the repeal and replace bill in the House and so far grassroots pressure has prevented Speaker Paul Ryan and the Trump administration from bringing their bill to the floor. It may happen tomorrow, but even if it does pass the House there will still be an even bigger hurdle to clear in the Senate. The fight will likely last into the summer, and we hope all of you out there will send letters, make calls, post stories, show up at rallies, and continue to advocate for improvements to — not a dismantling of — our health care system.
She is such a big kid now, with big likes (books, pasta, Duck and Moose pajamas) and dislikes (vegetables on most days) and a big swagger and parade wave. She has so much amazing personality, so we thought we’d take this marker to give a snapshot of the amazing joy that is Ida right now.
When he started singing Ba Ba Black Sheep Ida’s face lit up like a teenager at their first rock show. Then Julian took it up several notches by leading us in This Land is Your Land and then, at his suggestion, We Shall Overcome. We can get you his contact information if you want to book him.
her from some of the limitations of girl-socialization, while also giving her some self-determination around clothes, balloons, the shaker instruments she chooses at music class, etc. But her wardrobe is still varied, with many of Lucas’s old clothes and a variety of other hand-me-downs. And clearly I’ve done quite a bit of curating of her clothes options, since there are days that she and I manage to leave the house in a similar combination of navy blues and earth tones. But I have a feeling those days are coming to an end.
As I write this she is gathering up her creatures — stuffed animals of all stripes that she ties onto a “leash” and drags around the house on walks. Earlier today she squealed with delight and came running out of the bathroom delighted that “piggy in poddy!” I went in prepared to save a drowning stuffed pig, but instead she had placed it in her (dry and generally unused) toddler potty. We celebrated the pig’s great job by getting a square of toilet paper. Ida was thrilled to “wipe” the pig and flush the toilet paper down the big toilet. There are so many things to be excited about when you’re two!
