Category Archives: aortopexy

This Is the Worst Book Ever

swallow-my-sunshine-worst-book-ever
I got the CD-ROMs in the summer, and I opened them in November.

I’d asked the hospital to send me my daughter’s unabridged medical records only when I’d realized that it was as simple as filling in a form and sending a check. I did it before I could chicken out. I did it because I could. I did it because I was starting to jumble the facts in my head, because even though I didn’t want to sue anyone, I wanted those records before they got lost or deprecated, before their systems changed, before the years of my daughter’s misdiagnosis and unnecessary treatments got buried under other things, both in the hospital filing cabinets and in my soul.

When they arrived, I realized that they were not a box of papers, as I’d expected. They were on a handful of CD-ROMS: one for the notes and chart, and five for medical imaging: chest X-rays, CT-scans, EKGs, echocardiograms. I held the imaging CDs in my hands and wondered: was there a video in here of my daughter’s heartbeat? If she’d died, would I have wanted to hear it? Would I have wanted to play it as I fell asleep? Continue Reading…

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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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Padding

padding-relief

 

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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