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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Do Not Undo My Work

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All around the country, parents are furious.

Some of them went to great lengths to have their children. They went through infertility treatments for years, day after day of injections, procedures, medications and mood swings and worry, meditating on the child they saw in their dreams. They held their breath through much of their and their partners’ pregnancies, that child’s existence suspended by threads in their hearts. They held their partners’ hands through every ultrasound, every test, every kick and wiggle. When their children finally arrived, those arrivals were the most hard-won battle they’d ever faced.

And those parents are wondering now if, one afternoon, a storm might blow the windows of their houses in, eliminate their access to electricity and running water, coat their walls in mold and make that child, that blessing they begged for, sick. And that they might be holding that child in their arms on the roof, waiting for relief that spells out that child’s survival, if it comes. And those parents, imagining the roof, the cold, the squirming frightened child, are angry.

Some parents knew their child was waiting somewhere for them, if not in the cells of their bodies, then elsewhere: in a foster home, in a pregnant woman not ready or able to care for a child, nearby or across the state or across the world. Those parents waited for years — through paperwork, through interviews, through false starts and second thoughts, through faith and desperation, until one day that baby or that toddler or that teenager joined them in their living room, forever, making them a family.

And those parents are wondering now if, one afternoon, they’ll receive a call from their child’s school about an active shooter in the area. They’ll wonder if every door will be carefully locked, if every student will be safe, if their child — their sought-after, destiny-made child — will be inside, or will the call come at recess time? They are wondering where the nearest gun shop is. They are wondering where the nearest guns are. And those parents, imagining the classrooms of frightened children, imagining their frightened children, are angry. 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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A Letter to My Friends Coping with IEPs and 504s

Dear friends,

i-see-you-worried-parentsI read every single Facebook post you share about your children.

When the school year begins and my children are worried about whether their friends will be in class with them, I see your worry scroll across the screen in a darker, more anxious tone. Will the new teacher understand your son? Will the school protect your daughter from her nut allergy? Will the one-on-one aide be reliable, communicative, loving?

I know you probably wonder if anyone whose child doesn’t need that level of support has even noticed you. Perhaps that flicker of wonder passes quickly as you walk away from the schoolyard each morning to a list of therapists and specialists to call, or perhaps it digs in more deeply as you watch other parents’ first-day-of-school photos scroll past, uncomplicated. Continue Reading…

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Padding

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She’s ok, I thought, looking at her on the couch with her water bottle and her picked-at bowl of green jello. She’s ok and she will be ok. She’s ok and she will be ok. She’s-ok-and-she-will-be-ok, she-will-be-ok, she-will-be-ok, she-will-be-ok…


Parents like me, whose children have been through medical scares or ongoing health-related issues, often talk about the long-term anxiety that follows. Certainly in the immediate aftermath — even once the drama is months behind us — the expectation that we’ll worry more about our children is palpable. After my daughter Sammi’s last major surgery, the teachers and administrators in her school were incredibly kind and as careful as they could be to accommodate her healing, even in ways that might have been fussier than necessary for her but were utterly crucial for me and my comfort level. On major milestones — when she was allowed to return to recess, when she ate her first sandwich after years of a damaged esophagus, and on the anniversaries of the surgery that healed her, friends have cheered and celebrated with me, remembered and sighed in relief at my side.

But now it has been three-and-a-half years since the biggest legitimate worries subsided. There can be no mistaking her vitality. While there were years when even strangers could look at my daughter and suspect something was not quite right, now the most they might notice is that she’s slightly shorter than her classmates. I have little on which to base my worry these days, except for history and, I must admit, mild post-traumatic stress. Continue Reading…

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