Category Archives: esophageal dysmotility

Write the Story You Need to Read

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“rapid breathing of the newborn”

“morbidity vascular ring repair”

“esophageal dilatation toddler”

“vascular ring story blog happy ending”

“double aortic arch multiple surgeries”

“afraid my child will die”

“misdiagnosis eosinophilic esophagitis”

These are all real search terms I’ve typed into Google in the years since my daughter — now twelve years old and completely healthy — was diagnosed with a Double Aortic Arch just after her first birthday. In the intervening years, I typed those words into a desktop computer while nursing her on a big pillow in my lap or while she played on the floor nearby with her big sister; on a laptop at a coffeeshop while she went to preschool; on my first smartphone while I waited for her to come out of general anesthesia. I’ve been searching for stories like hers since I knew she’d have a story to tell. Continue Reading…

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Drenched and Beautiful

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One morning, I went out for a run. I had a busy, chaotic week ahead of me, with puzzles to solve and a full range of emotion to experience, and I wanted to clear my head, to shake out some anxiety, and to take an uninterrupted look at the world around me.

When I looked outside, the ground was wet and the sky was grey. Would it rain? I checked the weather on my phone, and it forecast no rain at all. I left my sunglasses dangling over my back door knob, turned on some music in my headphones, and headed out.

The rain overnight had left everything glistening with droplets of water, and the grey skies made every color seem brighter and more saturated. As I’ve done for the five years I’ve been running, I stopped whenever I saw something particularly beautiful, looked closely, and snapped a photo.

Not two blocks from my house, a father and son living in a row of townhouses have taken over their building’s street-facing garden. The flowers there are spectacular, and careful planning means that new blossoms are always greeting me as the seasons pass. That week, it was their pink hibiscus that was most prominent. I stopped, paused the music in my headphones, and took a photo:

hibiscus Continue Reading…

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No Way Through It But to Do It

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She is at the kitchen counter, tongue jutted out over her top lip, pencil in an awkward grip, tears rolling down her face.

“There’s so much of this!” she says, between strangled sobs.

I chop carrots, a profile at a counter perpendicular to the one where her science book, notebook, tablet, and half-eaten bowl of cheese crackers are scattered. Her hair is in her eyes, and she keeps angrily tucking it behind her ear. I put down the knife, rinse my hands, wipe them on the back pockets of my jeans, and walk gently and slowly around the edges of the counter. I pull her hair back and wrap it into a quick ponytail, and then I kiss the top of her warm, slightly-sweaty head.

“No way through it but to do it,” I tell her.

She falls forward, her head in her arms, and cries, still gripping the pencil. I rub her back, softly, and rest my cheek on her neck to whisper in her ear, little useless things about getting a drink of water, taking a five minute break, finishing her snack. She growls and rises, determined through tears to get it done.

I straighten and make my way back toward the carrots, noting that her sister is on the couch in the next room, laptop propped on her knees, papers everywhere, water bottle cuddled against her side. She’s absentmindedly eating a package of dried seaweed, listening to music, and occasionally holding her phone up at just the right angle for a photo containing only half her face. She looks up, and I blow her a kiss. She smiles, waves, and catches it.

The battle rages on at the counter.

I wonder what made my two daughters so different: the older one go-with-the-flow, flexible, arched toward satisfaction; and the younger one frustrated, questioning, mourning, her happiness easily won but equally easily lost. 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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Widening the Lens

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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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