Broken, Brittle, Patched, Softening

babysammiShe was outside my body for only a few moments before someone was suctioning her throat. I was paralyzed on an operating table ten feet away and I could hear the sound of the suction tube interspersed with the sound of her newborn cries.

“Listen to her cry,” the midwife, at my side since the start of the c-section, said encouragingly. “That’s a solid cry. She’s strong.”

She was six weeks old when she had her first bronchoscopy, 13 months old when she went under general anesthesia for the first time, and fourteen months old the first time a doctor opened her body up and laid an expert hand on her tiny aorta.

She was four years old when she started having regular endoscopies. She was five years old when she started remembering the road to the hospital and asking me if today was a day she’d go to sleep there.

She was eight when, finally, they fixed what was wrong.

She was nine when the bullying started. Continue Reading…

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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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Spring Breaks: 2011-2017

It is April 7, 2011, and my family is giddy.

Sitting around the sticky table of a local frozen custard shop are my daughters and husband, each of them with a mountain of gooey dessert: piles of custard under clouds of whipped cream and rivers of fudge. My younger daughter, aged 5, is grinning ear-to-ear. I’m snapping pictures like the mother of a baby trying solid food for the first time. At one point, I step outside to breathe the fresh air of a world restored.

For the ten months prior to today, my little girl has been on a path to discovery, she and her team of doctors searching for the food protein that’s causing the strange patches of white blood cells in her esophagus, the patches that were keeping her from swallowing well. For ten months, she’s been avoiding a list of common allergens — dairy, soy, egg, nuts, and wheat — and undergoing tests to see if the culprit could be found. Earlier today, we got the news that only one food was left to be added, since all the others had seemed to cause her no ill. Adding that last food — dairy — means that she can eat out at any restaurant she liked. It means that, for the first time in ten months, we can travel without worrying about her food.

We leave the frozen custard shop and embark immediately on a road trip. We feed her everything she’s been missing: restaurant pancakes with butter and syrup, cheese popcorn, candy bars, pizza, string cheese and yogurt. For the first time in nearly a year, I don’t carry a big insulated bag full of food for her. We rejoice, but under the rejoicing is the knowledge that this is just another food trial. It’s both a first meal and a last — this is the last food trial, and everyone expects it to be a failure.

Spring break, 2011: last meal. Continue Reading…

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Widening the Lens

widening-the-lens

Many years ago, before I had children, I joined the staff of a large nonprofit organization as what I thought would be a relatively insignificant cog in a mighty machine. Instead, I was surprised when my new boss put me in charge of a committee to plan a big redesign of the organization’s enormous web site. I’d never sat on a committee or even attended a committee meeting before, but my boss said it wasn’t hard. I trusted her.

What followed were were months of meetings and planning sessions. We interviewed vendors, discussed budgets, and were deliberate in our choices. We began the nearly inconceivable task of moving tens of thousands of pages of content from one system into another, page by page, which took hundreds and hundreds of hours. For the unappreciated staff members who were responsible for their departments’ pages, I threw “parties” in our training room and fed them cookies while answering their technical questions. During that time, I went home each night to my first baby, who was born in the early stages of the project’s conception and who turned one just before the new site launched.

The launch was an unmitigated disaster.

The staff was thrilled to have it complete, but we had missed a major consideration. Though we had been thorough amongst ourselves, the organization for which we dozens of staff members worked was a professional association. Our members used this web site for their work — for reference, for activism and advocacy, and for their own teaching tools. They were our most important stakeholders — and we hadn’t asked them a thing about the site before it launched, a fact which they — appropriately — did not take well. After an onslaught of angry emails, the director of the organization flew several board members and a dozen other influential general members to our office on a Saturday. I kissed my baby girl and my husband goodbye and went into the office.

I was 28 years old. I had never met a member of this organization before. I had never been to a board meeting. Continue Reading…

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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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