Passover in the Children’s Hospital

soup-veggiesTonight is the first night of Passover, and I woke up early to chop carrots and celery and onions and garlic, the four-musketeers of my favorite parts of the traditional festive meal we’ll have tonight. As I type, I can smell the matzo-ball-soup cooking, the potatoes I added thickening the broth, the dill adding the freshness of spring. I don’t have much time to plan the seder itself, a religious service observed at my second favorite chapel in the world: my dining room table, second only to my kitchen.

I appreciate this day more now than when I was younger, possibly because I spent one terrible, heavy Passover in the hospital with my youngest daughter as she recovered from heart surgery. I think of it now, every year, as I chop and season and clean and prepare for the sometimes 28, sometimes 15 people who come to my house to share the meal with us.

That year, it was just me and Sammi: me in an armchair and her in her tipped-up hospital bed, eating matzo with jam and fat-free cheese and watching The Prince of Egypt on Netflix. It was beautiful, and it was terrible, and while I’m glad we did it, I never want to do it again. Continue Reading…

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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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Musical Fences

She was a tiny bump in my belly, straining against my leggings, when I bought the fiddle.

I knew it would be years and years before I could bring myself to make a purchase this extravagant and this selfish just for myself. I knew I needed something to remind myself of who I was without her, without her sister and without my husband, and that when this baby was born and home, I would be overwhelmed and need the occasional escape. I went to several violin shops before I settled on this gentle, caramel-sounding fiddle, which I played in the musty basement practice room of the folk music shop.

I played Roaring River and Bumblebee in a Jar and Courting Days Waltz, and I knew the fiddle was mine. It was easy under my chin and pressed into the space between my thumb and my index finger. It belonged to me: four strings to fence me off from the loss of self. Continue Reading…

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How to Make a Nest

making-a-nest-swallow-my-sunshine

How many people had to love this child for this picture to be here, bright and beautiful and nearly bleached-out with sunshine?

The grinning child in the center has been home from the hospital for five minutes, five minutes that followed forty in the car; forty minutes in the car that followed six days in the hospital; six days in the hospital that followed three hours in cardio-thoracic surgery; three hours in cardio-thoracic surgery that followed five months of knowing it was coming. Continue Reading…

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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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