No Way Through It But to Do It

kids-and-homework

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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How to Feed the People You Host

holiday-table

I’ve spent some holiday dinners eating dry bread and salad.

In front of me on the table were platters piled high with other food, but because of a combination of my vegetarianism and allergies, only the bread and salad were real options for me. In those moments, I harbored no ill will toward my hosts; having hosted holidays before, I knew that it took a lot of work to accommodate the preferences and allergies of a complicated group of guests. It’s not a job for an inexperienced or inexact home chef. I knew all this as I sat and ate my undressed salad, nibbling on my plain bread, and I wasn’t bitter.

Still, I’ve tried never to do that to a guest in my own home unless I had no other choice. Over the years, I’ve had guests for Jewish holiday meals who ate no carbohydrates, no grains, no gluten, no dairy, no beans, no soy, no tomatoes, no nuts, no broccoli, no cinnamon — not to mention the years when my own child was on the six-food-elimination-diet or the chylothorax diet. I’ve managed, in most cases, to offer at least two tasty options to each person — even options that others at the table would enjoy, too. It takes planning, but it’s not impossible.

Here’s how I’ve done it: Continue Reading…

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Lemonade Out of Gluten-Free Lemons

grocery-cartSometimes, I just have to laugh at the way the universe answers the questions I haven’t even asked yet.

It’s half-way through the summer of 2017, and here I am, suddenly aware that I live with one foot in the summer of 2010. I spent that summer in a cloud of specialty flours: tapioca and arrowroot, garbanzo and white rice and coconut and and sorghum. I sprinkled xanthan gum like a gluten-free fairy into all the creative ideas I had for how to make food for my daughter, whose health challenges required that she cut out dairy, eggs, soy, nuts, meat, and gluten. During my deep-dive into specialty cooking for what I called the “joy-free” diet, I dreamed in recipes and grocery store trips. Along the way, I picked up several dozen grey hairs, but I also became an unwilling expert on food challenges.

Though my daughter’s health issues resolved without any need for her to continue with food restrictions, the knowledge I gained never went away. In some ways, it’s not unlike a spare tool in the garage; though we seldom need that particular odd-shaped wrench, the neighbors know we have it, and they can borrow it any time. Even though we may have bought that wrench to put together a hospice bed or to tighten bolts in a subfloor that collapsed beneath our feet — and seeing it brings back every memory of that awful time — we’re glad it’s going to use for someone else who needs it. That wrench — my reluctantly-gained knowledge — shouldn’t go to waste.

Because of this, my friends call me when they need to follow an unusual diet or avoid a common food. And because I want to make lemonade out of those gluten-free lemons, I always help. Always. 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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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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