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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They’re Not Here Anymore

sick-baby-tired-mama

It is early 2006. The woman holding the camera — a small digital camera with a flash, the only camera she has — is taking what someday will be known as a “mirror selfie,” and people will take them with their smart phones, which, in 2006, almost no one owns.

The baby in the photo is being held securely in a ring-sling, a native-style baby carrier that holds her snug against the woman’s chest. She is asleep, making a raspy, wheezing, wet sound which precludes the woman from doing the following:

  • talking on the phone
  • hearing anything on the tv
  • coping with anything but the most crucial, immediate needs
  • thinking

Continue Reading…

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Tell It Again

It is 2005, and my newborn daughter’s breathing is wet, gurgling, raspy and fast. It gets worse every time I feed her, and when I consult my dusty copy of Dr. Spock to see what he says on the topic of infant breathing, it tells me that she is taking far too many breaths per minute.

I take her to the doctor, who waves me off. “Rapid breathing of the newborn,” he says. “She’s fine.”

It gets worse and worse and finally, we make an appointment with a specialist. Terrified that the specialist will send me back home, where I have to turn my tv louder to hear it if my six pound month-old baby is breathing in the same room, I wrack my sleep-addled brain for a way to convince any doctor that Something Is Not Right With This Baby.

And then I find USAmma.

On the parenting forums at Mothering.com, USAmma is posting regularly about her baby daughter who suffered from terrible reflux. Though she is active on several forums there, most often I see her answering questions about GERD (gastro esophageal reflux disease). If any parent mentions reflux, inevitably, USAmma responds. At one point, she shares links to a series of videos she and her husband had made of their daughter exhibiting behaviors consistent with severe reflux.

It is my light bulb moment. I take the tape recorder I usually keep in my violin case — to record fiddle tunes from local fiddlers — and set it next to me on the couch. I turn off the TV. I record my baby breathing, then nursing, and then breathing after nursing.

When I play the recording for the specialist, his eyes widen. He rewinds, listens again. Then he gives her a diagnosis. As I leave, he thanks me for making the recording.

“That was very smart,” he tells me. “Great idea.”

I write to USAmma, and thank her.


It is mid-2006, and I am going out of my mind with the tedium of at-home motherhood.

I hear about a new blog network called Zaadz. A friend from my old life, someone who’d championed my work and enjoyed even my boring technical writing, tells me to start a blog about playing the fiddle and writing a book. “Call it ‘Fiddle and Quill,'” she suggests.

I call it “Here we go,” instead, and start writing about what’s happening. I tell the story of my sick little baby’s birth — a series I call “Woah Baby” — and out of no where, a mother from Alaska contacts me to say that her son, born a week after my daughter, has the same diagnosis.

We chat online every day. Her son vomits; my daughter wheezes. She lives in the country; I live on an alley in the city. Alone in my kitchen with a baby constantly attached to me and orders not to take her out among people and germs, I see my friend in Alaska as a lifeline. Without her, I would be heartbreakingly lonely. In the process of comparing medical notes, we become fast friends.

I keep writing our story. She keeps reading.


It is 2014, and my baby is eight years old.

I join a committee at our local synagogue and find myself the youngest person in the room by more than a decade. Everyone else has raised their children. I am intimidated, wondering if I have enough in common with this group to forge relationships. I needn’t have worried; the committee is full of good souls with open minds, and we work together well.

Several months into the work, I learn that my daughter will need cardiac surgery — her second operation, and more complex. Distracted and flustered, I walk into our monthly meeting and share the news. I expect nods, side-hugs, and perhaps offers of ambiguous help. Instead, one committee member looks across the table with faint tears in her eyes and says:

“Did you know my son was in that cardiac ward for over a month a few years ago?”

I hadn’t known. She tells me about the virus that attacked his heart, the weeks she spent in the hospital with him, and the recovery he made thanks to the very same surgeon who would soon be operating on my daughter. She talks about her current volunteer work on that same ward, the wonderful nurses and the dedicated volunteers who will surely make our stay as easy as they can.

As the weeks go on, she checks in with me. Before the surgery, she sends me an email, and after it’s over, when I email the large group of well-wishers with the good news that it was a success, she is one of the first to respond.

“So glad to hear! Obviously, still a ways to go, but sounds overall like good news. Phew!”

Years later, she admits to me that she worries about how much she shares the story of her son’s illness and how it affected her. When she says that, my own heart sinks a little. I, too, worry that I talk and write about my daughter’s illness too often. Then, I think of the stories above — how someone’s willingness to share their experiences had a direct and positive impact on exactly the person who needs that information most.

Where would I be without USAmma?

Where would I be without my friend from Alaska?

Where would I be without my fellow committee member?

Begging for the recognition of a problem. All alone in the world. Terrified without a soul who understood me. 

I’m going to keep talking and writing. I hope others do the same.

 

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