Oh My Goodness

ACA-relief

This the face of one seriously relieved mother.

I’ve watched the heath care legislation being volleyed across Capitol Hill in Washington, DC for the past several months with what one might call significant personal interest. I’ve refreshed APNews, The Guardian, Fox News, CNN, and Twitter more often than any other moment in my life, trying to get a sense for what might happen next, tracing the path of my family’s future as it zipped past us, back and forth. Protections that allowed me to focus on the moment with my daughter as we unravelled her mysterious health challenges over the first nine years of her life have spent the last few months in question, threatened by elected officials who seemed to favor the interests of huge insurance companies over those of children like mine.

Last night, it seemed that compassion tipped the ball over the net, just barely. Continue Reading…

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Loose Ends

The pensive platform-makers at Girl Meets Voice shared a quote this week that had me nodding at the screen:

It seemed karmic, somehow, that I would read this reflection in the same week when finally, after years of thinking-about-it, I sent away the application for my daughter’s full, unabridged medical records.

The circumstances seemed a little like destiny. One morning, digging my way through several days’ worth of ignored email, I saw a message from the hospital where she’d had all of her treatments, telling me that I needed to complete additional paperwork with her signature if I wanted continued access to the abridged records they keep on their online portal. At age twelve, it seems, they want their patients’ consent for parental access. I clicked on the link to download that form and noticed, on the same page, the link to download a request for full records. Without taking much time to change my mind, I clicked that link, too, and downloaded both forms.

A year ago, I had visited the medical records department of the hospital when I was there to visit a friend’s child. Propelled by a feeling of both excitement and dread, I asked for copies of everything and was told that such a request takes weeks to process, and required the completion of a written request. At that point, dread won, and I walked away without doing anything.

Now, however, it has been more than three years since the surgery that finally liberated my daughter’s esophagus. I no longer hear her cough and wonder if she can’t breathe. I don’t have to make vacation plans around her procedures or whatever strange diet she might be on. She’s slowly, slowly gaining height and weight. The remaining signs in her of a sickly past are limited to the long scar on her back and, perhaps, to a missing inch or two in height.

In the years when we were still in the thick of it, I sat often enough in rooms with doctors that I could ask questions about what they thought and why. At first, they thought it was loose tissue in her larynx that made her breathing so loud. Then, they thought it was the extra arm of her aorta that choked her so tightly. Then, they said it was food intolerances keeping her from eating well and growing. Finally, they found the meandering artery smashing her gullet, and a surgery to move it away changed her trajectory from illness toward robust, glowing health. She seldom talks about it anymore, absent-mindedly eating a bucket of popcorn, a bowl of cherries, an overflowing bowl of pasta.

For me, though, there are a few loose ends. Sometimes I turn a corner and feel them flapping behind me when I hear a nearby baby cough. They tickle my ankles and make me lose my balance for a moment every time I watch my daughter get a vaccination or a blood draw. Mostly, though, they float into my vision when I’m paying medical bills and go to file anything in her huge, bulging folder of insurance paperwork.

They nag at me: why did this go on so long? Why did the doctors who missed her diagnosis disappear and stop returning our calls? What kind of test results went unnoticed, what kind of clues did we miss?

As I begin to flesh out the book-length version of my daughter’s medical mystery, I realize that the experiences alone are not enough. At first, they were all I could stand to share, but without a conclusion drawn from them, they amount to nothing more than a wild story for a cocktail party. After three years, I am ready to tie this package up in twine and to label it in uppercase letters. What will the label say? MISDIAGNOSIS. NEGLIGENCE. APATHY. CORPORATE MEDICINE. FATE. MALPRACTICE. UNSOLVED MYSTERY. RARE. SILOS.

I’m ready to find out.

loose-ends

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This Could Make You Gasp

cough-syrup

What happened to me last winter could happen to thousands more people this year, and that’s not good.

I’ve never before heard a cough like the one I had this past December. It was something like the startled bark of a tiny puppy crossed with that puppy’s squeak toy. Or, it was like the highest, most urgent note of a harmonica, not blown-out but inhaled-in quickly. It was an alarming sound, and frankly, it didn’t even seem human.

At first, I thought it was just a bad respiratory infection, a common cold made more challenging by my moderate asthma. By the end of the first week, though, after three trips to the doctor in as many days, I was sure something bigger had happened to me. A chest x-ray didn’t turn up anything obvious, and so I was sent on my way with antibiotics and steroids, and I resigned myself to the couch for a full week.

The cough hardly changed at all, even on the medications the doctor prescribed. It made anyone who heard it shake their heads at me. It made me unquenchably thirsty; I drank 90 ounces of water a day, which is at least five times my normal intake of any liquid. My chest hurt. My stomach hurt. My throat hurt. The insides of my mouth hurt.

After a month, it wasn’t gone, so I went to my doctor again. By then, though the fevers were gone and my energy had improved, my voice felt precarious and ghostly, a craggy sound at best, and at worst, one I couldn’t even guarantee would come out when I opened my mouth to speak. My phone would ring, and I would open my mouth to say “hello,” only to croak out “…lo,” the first syllable lost in in my recent history somewhere, in a time when I could say what I meant.

My doctor sent me to other specialists – my asthma doctor and an ENT. My asthma doctor said she had a suspicion about what had happened and took a blood test. In the meantime, she prescribed more steroids and sent me to the ENT for a closer look at my vocal cords.

When the test came back – five weeks later, after I’d already discovered damage to my vocal cords and begun voice therapy – I wasn’t surprised. What I’d contracted in December was pertussis, also known as “whooping cough.” 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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