In late October, she got to add eggs back into her diet on a trial basis, and I learned how incredibly, incredibly useful eggs can be in managing a diet as challenging as hers. When we added back eggs, it made it possible for us to make these ridiculous — and I mean ridiculous — “pizzas:”
It 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.
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…
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…
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…