This Is the Worst Book Ever

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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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2017: Counting and Not Counting

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In December of 2014, I had my first meeting with Deborah Siegel of Girl Meets Voice, a consulting firm helping women get their thoughts and world-changing ideas out into the world. Deborah looked with bright, interested eyes over the table at me and asked, “what’s your idea? what do you need to say?”

I had walked into that meeting thinking that I knew exactly what I wanted to say, but when she asked me so directly, I wasn’t sure. I stammered out that I wanted parents to feel empowered to push against doctors who weren’t listening. I added that I wanted those parents to feel less alone, that their worries were shared and that they had more in common with each other than their distracted glances in crowded hospital waiting rooms.

“I want to write a book,” I said. 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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Faking It

worry

I am afraid. Almost all the time, in the back of my head, there is a low rumble of fear: that my husband will be hurt on his drive home from a business trip; that my older daughter won’t be safe on the bus and the train; that my younger daughter will be bullied; that I will suffer from the same health problems as my parents and grandparents; that there will be war; that we will lose our health insurance; that someone will open fire on everyone I love. During the years of my younger daughter’s most intense medical drama, that fear and worry vibrated through every move I made, consciously and publicly.

These days, though, I experience fear in much the same way that I absorb nutrients — unknowingly, unaware until the worry stops, when I realize that something has released in the back of my shoulders. It seems like an instinct to be imagining the worst. Perhaps it’s a mild form of post-traumatic stress, from a time when the worry was well-founded.

Right now, though, I’m sitting in my kitchen shaking over my coffee after what appears to be an unfounded school shooting threat at the high school my older daughter attends and where, today, my younger daughter will visit for a fine arts field trip. Overnight, I slept fitfully as the police investigated. I waited to make the determination of whether to send my daughters to school and, in the end, after vague but reassuring emails from the school, I sent them off. I breathed in the scent of their shampoo and told them how dearly I loved them, and I released them into the wayward world.

My older daughter knew what was happening and trusted in my decision. My younger daughter did not know, and I opted not to tell her. As I navigated both choices consciously, based on their personalities and inclinations, I felt my hands shaking and tucked them into my sleeves. When they left, I used my shaking hands to make coffee and sit in the silence.

In a few days, I will begin a month of conscious daily writing as part of the Nano Rebels, a group of non-fiction writers participating in National Novel Writing Month. As always, I am committed to writing the story of my conscious parenting during my daughter’s years of medical uncertainty. As I took stock of myself this morning, I thought I would re-open the most recent chapter I’ve been writing, and, as always, the universe provided me with exactly what I needed. Here is an excerpt from this chapter-in-progress, in which I discuss the ways we approached our younger daughter’s preschool-aged tantrums. They were epic and, most likely, related to her constant hunger, something we wouldn’t realize for years. We’d been seeing a therapist to help us manage these violent tantrums:

[Our therapist] had taught me to sit down on the floor, cross-legged, and pull Sammi into my lap with her back against my front, firmly. Then, I had to wrap my legs around her lap and hold her hands down at her sides. If I did this right, it worked like a human straightjacket for Sammi, keeping her from banging her head, biting anything, or throwing herself backward onto the hardwood floor.

This accomplished more than just keeping Sammi safe during a rageful tantrum, which came less and less frequently as she approached age four. It also forced both Sammi and I to see that I could – and would – keep her safe. Holding her as she screamed and flailed fruitlessly felt, in many ways, a lot like the way I experienced myself at her bedside in the operating room. I was calm because I had to be calm; I was there because I was the best possible person to be with her; I did it because I was her mother and she needed me. On the floor of our living room, wrapped tightly around her as she bucked and thrashed, I was touching her with more of my body than I had even used when she was a baby growing in my womb. I felt, sometimes, as though I was pouring some kind of spiritual nutrition into her during those moments. It was composed of primal nurturing, nurturing that has at its core the protective properties of pure love.

Years later, I read about the proven health benefits of something called “the 20 second hug.” Research by the department of Psychology at the University of North Carolina in Chapel Hill (http://www.reuniting.info/download/pdf/WarmContactPaper.pdf) showed that a 20 second hug between romantic partners lowed blood pressure and heart rate far more than 20 seconds of rest. In remembering the time of my parenting life when I regularly sat down and wrapped my entire body around Sammi for between one and five minutes, I recall the way that she eventually went limp, sniffled and shook with a deep sigh, and said, “I’m ready to be calm, Mommy.”

Usually by then, I, too, was calm.

 

As parents, we are often called upon to be calm for our children, to put on a “brave face” so that we don’t scare them. This is not to say that there is no place for vulnerability or honesty in our parenting; after all, children also need to see that emotions are real and deserve to be honored. Sometimes, though, as the central nervous system takes over my thoughts, being forced to be calm for my children eventually brings me the same relief it brings them. In that way, every time I can “fake it til I make it” with regard to the low hum of fear in the center of my chest, the more likely I will be able to feel that calm for real.

It’s a hard day. There will be more of them. I will sit with the fear, drink my coffee, and listen for the all clear.

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