They’re Talking About My Family

talkingaboutusThe U.S. House of Representatives voted yesterday to strip away financial protections for people with pre-existing conditions. Those people include, tucked away in the millions affected by this legislation, my own family. Here’s what they had to say about me (asthma, allergies), my older daughter (congenital kidney condition and severe menstrual cramps) and my younger daughter (congenital heart defect).

They said we weren’t their problem.

Sorry Jimmy Kimmel: your sad story doesn’t obligate me or anybody else to pay for somebody else’s health care.” – Former Rep. Joe Walsh, IL

They said we should adjust our priorities.

And you know what, Americans have choices. And they’ve got to make a choice. So maybe rather than getting that new iPhone that they just love and they want to spend hundreds of dollars on that, maybe they should invest in their own healthcare.” – Rep. Jason Chaffetz (R-UT)

They said we weren’t “good people.”

My understanding is that it will allow insurance companies to require people who have higher health care costs, to contribute more to the insurance pool which helps offset all these costs, thereby reducing the cost to those people who lead good lives, they’re healthy, they’ve done the things to keep their bodies healthy, and right now those are the people who’ve done things the right way, who’ve seen their costs skyrocketing.” — Rep. Mo Brooks (R-AL)

They said if we were poor, we wouldn’t want health care anyway.

Just like Jesus said, ‘The poor will always be with us,’…There is a group of people that just don’t want health care and aren’t going to take care of themselves…Just, like, homeless people. … I think just morally, spiritually, socially, [some people] just don’t want health care.” – Rep. Roger Marshall (R-KS)

They lied to us.

“JOHN DICKERSON: So I’m not hearing you, Mr. President, say there’s a guarantee of pre-existing conditions.

“PRESIDENT DONALD TRUMP: We actually have — we actually have a clause that guarantees.

“JOHN DICKERSON: Okay, excellent. We got there.

“PRESIDENT DONALD TRUMP: We have a specific clause–

“JOHN DICKERSON: Let me ask you–

“PRESIDENT DONALD TRUMP: –that guarantees.”

They said we could just leave.

People can go to the state that they want to live in…States have all kinds of different policies and there are disparities among states for many things: driving restrictions, alcohol, whatever…” – Rep. Robert Pittenger (R-NC).

They said we didn’t exist.

Less than 10 percent of people under 65 are what we call people with pre-existing conditions, who are really kind of uninsurable.” – House Speaker Paul Ryan (R-WI)

whoareyoureps

This has been a Finish the Sentence Friday post. This week’s sentence was “They call me…” and is hosted by the thoughtful, speculative, inspiring Kristi at FindingNinee.com.

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The Phones Our Insurance Saved Us

Our family, unlike the majority of Americans, has spectacularly good health insurance. It’s provided by an employer, and because of my husband’s combination of high-demand skills, excellent work ethic, and good luck, we’ve had the same coverage for more than a decade. Here’s how it works:

Every two weeks, my husband’s employer deducts $196 from his paycheck for our medical insurance.

Despite that, beginning on January 1 each year, we pay for 100% of the cost of every doctor’s visit, every prescription, every blood test, and every other medical cost until we have spent either $1,500 per person or $3,000 total for our family of four. That means that, until we have reached into our own pockets and paid $3,000, our insurance has not even begun to kick in.

After we’ve spent $196 every two weeks and $3,000 for medical costs, our insurance begins to pay 80% of every bill that comes in. We pay for the next 20% of each bill — a welcome change from the 100% we’d been paying before that.

As a family, once we have spent $7,000 on medical costs, our insurance begins to cover 100% of whatever medical expenses come next. Let’s review, then, the cost of medical care for our family in a year when someone gets really sick:

 

insurance-costs

Continue Reading…

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Nevertheless, We Persisted

post-surgery-daughterFebruary is American Heart Month. My social media feed is currently split between political postings and photographs of babies and children with scars I recognize all too well — across the shoulder blade in back or right down the middle in front. Parents and grandparents I’ve met online through our shared journey are posting information about their children’s experiences, their families’ grief or triumph, and ways that their communities can contribute toward better outcomes for anyone born with a congenital heart defect, like my vibrant, finally-healthy daughter Sammi.

These images are unrelenting. They drag me back, every time, away from the image of the grinning, singing girl I kissed goodbye this morning and closer to the sick baby covered in wires and tubes. I negotiate the difference in leaps, then think back on what to say to the parents still in the thick of it. How will they make it to my present-day? 

Of course, the other half of my social media feeds are the political posts — assaults on freedom and confusing conflicts everywhere I turn. Truth is under attack there just as it was when I fought for Sammi’s care. Out of the mess tangling over and over itself in the news, however, came a surprise rallying cry intended to shut down a woman’s resolute message. To anyone who has followed US politics, the censure of Senator Elizabeth Warren by Senator Mitch McConnell is likely memorized by now, but for emphasis and clarity, it’s worth repeating:

“She was warned. She was given an explanation. Nevertheless, she persisted.”

It’s easy to turn this into a rallying cry for women, in general. So often, this is our only path to success, whether we’re discussing the fight for suffrage, land ownership, birth control, or just a seat at the board room table. What many women don’t know, however, is that infuriating as those indignities are, when what is at stake is our children’s lives, persisting is not a choice. It is an instinct. Continue Reading…

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When Being Right Doesn’t Matter, or Does

itmattersSomething was wrong with my baby daughter.

I said it to her pediatrician when she was just a few weeks old. He laughed at me, told me she was fine.

I said it in the emergency room when her chest and throat were retracting with her rapid breath. They gave her meds, watched her for a few days, sent her home with me.

I said it to her new pediatrician. She looked more closely, waited, told me to sleep-train her.

I said it again when everything failed, when she wouldn’t eat solid food, wouldn’t sleep through the night, couldn’t make it through a cold without hospitalization. And finally, finally, someone found the something. When they did, nobody said, “oops.” They fixed her congenital heart defect, the source of every problem.

I was right, but it didn’t matter.


Continue Reading…

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Feeding the Democracy

scones for the aca

The house was quiet last Friday night after an evening of happy chaos. My children tucked into bed, I faced the kitchen with resolute attention.

On the stove, a nearly-empty pot of lentil stew was developing a crust. Next to it, the picked-clean brownie pan shone with spray-grease, and a cutting board with the shreds of peeled carrot and the ends of a cucumber was topped with my best chopping knife, visibly dirty. The sink was empty, but clean dishes dripped on a towel on the counter above my humming, hardworking dishwasher. Every measuring cup and spoon in the house awaited me.

I put on some quiet music and hatched a plan. First, set the oven to pre-heat. Get the next set of ingredients ready before you tackle the pots on the stove. Make some tea. 

Every moment saved is vital to a mission of importance. I learned this in the years I followed this same set of late-night tactics to feed my family under a set of ridiculous dietary restrictions. In the evenings, I often made snacks, planned the next night’s meal or the next morning’s breakfast. I tried to clean my kitchen every night too, so that even I could start fresh the next morning.

It didn’t change my daughter’s diagnosis if I stayed on top of meal planning and dishes, but it contributed in a different way. When I didn’t do these things, I woke to a set of daunting tasks that kept me from pursuing the bigger issues of my daughter’s health care. If the day started with me unprepared, I played catch-up and my family absorbed that energy, too. Giving my family some sense of normality in what seemed like totally abnormal circumstances meant more work for me, but the results were worth it. As we dealt with a new set of daily routines and limited access to our previous life, whatever I could do to lengthen the fuses of my family had value.

I had to feed my family through that crisis. And now, I’m trying to feed my larger family through what’s to  come. Continue Reading…

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