Forget It, Or Don’t, Or Hold It Lightly

swallow-my-sunshine-chairIt was December, 2013, when we had that awful conversation, the doctor and my husband and I.

It was cold out, and my body wasn’t ready for it yet. That’s why my chin was quivering as I sat in the upholstered chair next to the window, cradling one phone while my husband stood alert in the next room with another extension in his hand. It was cold outside, and I didn’t have my winter metabolism running by then, so my hand shook. It shook so much that the paper in front of me was blank the whole time. I never wrote anything. At the end of the conversation, when the doctor’s excitement oozed through the phone because the missing piece might really fit in the puzzle this time, my paper was blank and my toes were tucked under my bottom in the chair, holding me tightly into the space where I was curled now, so cold, so cold because I was near the window, the winter window, on a frigid day. That’s why I shook. That’s why I shivered.

But actually, it turns out, it was November. Continue Reading…

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On Raising Bodies

When my first daughter was brought to me, pink and hot and smelling like something elemental and metallic, I could hardly believe how thrilled I was to see that she was a girl. It turned out that I’d wanted a girl more than I’d been willing to say. I loved everything about it: choosing her name, buying her cute clothes, and saying the word “daughter.” I assume I would have felt the same way about a boy, once I saw him, but I never got that chance. I have two daughters, defying my pregnant instincts and imagination both times.

The truth was that I was afraid of one monumental thing when it came to parenting daughters: screwing up their relationship with food. Continue Reading…

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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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