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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Raspberries, Mushrooms, Garlic, Plums, Peace

farmers-marketFor ten summers, with varying frequency, I’ve been taking my daughters to the Saturday Farmers’ Market. In more ways than I could have ever expected, it has saved our sanity.

We began going to the Farmers’ Market as a way to preserve the parenting energy my husband and I needed. He and I made a pact after our second child was born: each of us would ensure the other got to sleep “late” (read: 8 am) one day a week. He slept “late” on Saturdays and I claimed Sundays. On Sunday mornings, he packed our squealing, chattering daughters quickly into the car — sometimes in their pajamas — to go to Home Depot, which was sometimes the only place open on Sundays. There, he handed them paint sample cards to carry and let them touch all the doorknobs while he mused over the varying bolts and power tools that just might be required for his next renovation project in our old townhouse.

On Saturdays, I took the girls to the Farmers’ Market. It opened at 7:30 am, and some Sundays, we parked our car in the tall parking garage overlooking the Market and watched as the farmers set up their stands. Had we stayed home, I would have been aggressively shushing them, desperately trying to give their father the sleep he’d earned yesterday in the dawn at Home Depot. Out of the house, I somehow discovered the reserves to be patient.

“Look,” I’d say. “Look at all the flowers in that truck!” Continue Reading…

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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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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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