In Their Season

“I wonder if the snow loves the trees and fields, that it kisses them so gently? And then it covers them up snug, you know, with a white quilt; and perhaps it says, ‘Go to sleep, darlings, till the summer comes again.’
― Lewis Carroll, Alice’s Adventures in Wonderland & Through the Looking-Glass

I. Swaddle

It is a sunny afternoon, and for once, my newborn daughter is sleeping soundly, peacefully if not quietly. The wheezing, gurgling sound from where the tissue of her larynx flaps against itself surrounds her perfect, gorgeous face — it says cchchhhh sssccchhhhh ssscccchhhhchhh. But her eyes are closed, and I pass her from friend to friend in my living room, easily, with no drop of her head or arm stuck in someone’s armpit. This invention, I say to myself, is freaking brilliant. I need ten more, just in case. Continue Reading…

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Layover in Holland

layover-in-holland

Within the community of families with special-needs children, there is a well-known poem/essay called “Welcome to Holland.” It became famous in this community because some loved it and felt it really spoke to them, and some found it galling and infuriating. In “Welcome to Holland,” the writer, Emily Perl Kingsley, compares life with children who have special needs to a flight she expected to arrive in Italy, only to touch ground permanently in Holland. The rest of her life is filled with experiencing all the real, tangible beauty of Holland, even as she has to hear all the stories of Italy she will never experience firsthand.

It’s an obvious metaphor, and certainly simplistic, but it’s easy to see the comfort it might provide. Few pregnant mothers dreamily stroke their stomachs and imagine the beauty of the metaphor in which Holland stands for a life of health struggles and emotionally draining paths to seeing one’s child’s basic needs met. However, once they stand in on the tarmac in the strange land they’d never considered, it’s only human to peer into the distance and seek out the tulips. Those tulips are real, at least some of the time. Continue Reading…

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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

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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