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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I Don’t Want to Write About Politics

politics-is-everythingI don’t want to write about politics, but every piece of my life is controlled by it.

I woke up Friday morning and realized my high-school-aged daughter had slept through her alarm. Her high school offers tremendous opportunities for academic and extra-curricular rigor, but if she wants to be a member of the honors society (a prerequisite for her preferred college admissions), she also has to do community service and show some proof of outside-of-school leadership. Thursday, she went to school all day, helped teach at her religious school, and then attended a meeting of a task force at our synagogue, returning home at 8:30pm to begin her homework. Educational policy has set this system up for kids like my daughter, a hamster wheel of achievement that burns kids out by the end of their senior year. Politics made her exhausted today.

When I came downstairs Friday morning, my younger daughter sat at the kitchen counter watching YouTube videos and eating breakfast. Though she seems healthy now, the years of worrying about her growth curve make my furtive glances at her food choices an instinct. I note the volume and count the calories in my head, inventory her planned activity for the day, and check myself; she’s fine. A part of her history stems from misdiagnosis her doctors made and for which they never apologized, a reality that I suspect comes from their fear of lawsuit. That misdiagnosis will stay on her medical chart, making her vulnerable forever to the caprices of health care legislation. My 11-year-old may be doomed to a life of wildly overpriced health insurance. Politics will someday make her — or keep her — sick. Continue Reading…

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We Know The Things

peas

I have never identified so closely with something written by another mother as I identify with a Mother’s Day essay written last year by Ellen Seidman of LoveThatMax.com.

Entitled, “I am the person who notices we are running out of toilet paper, and I rock: A Mother’s Day tribute to moms everywhere,” this essay includes Seidman’s lists of all the practical, life-improving practical things she notices in her own home. Among things like snack food and glitter and glass-cleaner are also the things like “shoes that fit” and recent family photos and storage for the growing collection of tiny toys from birthday party giveaways. Ellen, like most mothers, also notices uncharged electronics and plugs them in, and she realizes the vegetables in the fridge need to be used before they spoil, and she remembers to procure a gift for the next graduation party her family will attend.

In short, Ellen is a parent.

For most but not all of my female friends with children, Ellen represents in her blog post the inner workings of their minds at all times. Without question, many dads I know have a similar inner monologue, and Ellen notes in her blog that her husband has his own list going. In my house, actually, my husband notices the dwindling toilet paper supply long before I do, but I’m more likely to notice the absence of roasted seaweed, clementines, and red delicious apples before he does. Still, I definitely hold more of the practical, hands-on requirements of child-rearing in my head than he does.

In response, my husband has done a remarkable job thinking ten years ahead of me. When our daughters were born, he set up college savings accounts. He remembers to fund them, too. He handles detailed paperwork like school and religious school registration, health care savings accounts, vehicle research for our current one-car-every-decade-and-a-half car purchasing plan, mortgages, and managing things like making sure the roof isn’t falling in and, if it is, selecting a good roofing company with a good reputation.

And I buy the frozen peas.

Because of this division of labor, when I am forced to consider anything further than a few months away (“does she need new sandals for this summer?”), I find myself out of shape and ill-equipped for the task. I have a talent for dealing with this very moment, and that talent has been honed more than I’d care to have honed it in operating rooms and hospital bedsides over the last dozen years. I know how to throw resources into this very moment far better than how to plan for a moment in the distance. However, as health care plans for this country show a clear path toward ruin for my children, I was forced to get out of this moment and think about what might come next. 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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Practice Mom

tween
Every morning when I wake up, I lie in bed and listen to the radio for a few minutes. I am a morning layabout, suddenly, even if it’s just for long enough to hear the news snippets and the day’s weather. Below me, I hear the muffled sounds of my two daughters getting ready for their day. They’ve been up longer than I have.

This year’s mornings, I find I am no longer a lunch-maker, a breakfast-nagger, a pill-preparer, or even a walk-you-to-school mother of young children. This year, my daughters do all of that themselves.

Much like in the early years of my motherhood, when I tiptoed around my own instincts to see what worked and what didn’t, I am auditioning my moments of parenting with my tween and teen daughters. Particularly with my little one — no longer quite as little — I am working on the line between playful teasing and hurtful taunting; on the right time to help her find solutions to her worries and the right time to listen and offer no advice at all. Continue Reading…

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