Write the Story You Need to Read

write-the-story-you-need-to-read

“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

cloudy

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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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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