It’s been a long time since I posted.
Partially this is because I was writing elsewhere; the manuscript for the book I announced in my last post in (*gulp*) January was due at the beginning of June, and aside from the four chapters I wrote for the proposal, I was writing everything from scratch. Though I’d written a full manuscript already, chronicling my experience as my daughter Sammi’s advocate on our strange and perplexing medical odyssey, the COVID-19 pandemic squelched the publishing industry’s appetite for books about illness. Along with the proposal for a book on medical mystery went the entire 75,000+ word manuscript. In its place came a far more optimistic retelling, a story about my ambivalence for food that turned into a deep joy I found in cooking, feeding, and my own appetite. The story arc is the same, but — like in the parable of the blind men and the elephant — I’ve learned to tell it from a different perspective.
Writing the story from the trunk-end of the elephant, as it were, has helped me turn this even more into my own story and less of my daughter’s. Of course, she’s the key to revelation, but now that I have looked back with this lens — that food always held everything I valued, from nourishment to love to awe to compassion to delight — I can’t help seeing every meal I cook as an extension of that journey, the next chapter in the story. Continue Reading…
I think this is the longest I’ve ever gone without writing a blog post since this I started writing here. In my last post, I was despondent; my agent had all but given up hope on selling my memoir, and I didn’t want to pay to publish it via a vanity press. I had spent nine years living the story and six writing and trying to publish it, building a platform, researching and learning and thinking about the ways to reach families like mine. It was incredibly painful to think that my final goal of publishing our story in a real-honest-to-goodness-book had finally been stamped DENIED.
The day before I heard for certain from my agent that she was basically out of ideas, I went for a walk with my good friend Sarah. She and I had sat in the windows of the student union at Northwestern University, two years before, when I’d received a rejection from a dream publication for an essay I had felt was my best work yet. I was ready to give up, to decide that writing and publishing were too hard. She sat and listened in this serene, patient way she has, with long pauses before she speaks. She has a habit of looking straight at me almost the whole time we’re talking, not off to the side or up at the ceiling. She’s comfortable with silence and tension and she’s comfortable with waiting. After I doused both of us with my self-pity and negativity, she smiled a little bit and shook her head.
“I don’t know,” she said. “I have a feeling that something is about to shift for you.” Continue Reading…
I’ve barely written anything in the last week.
That’s not like me, and also, what IS like me anymore?
I’ve tried very, very hard to keep this whole thing afloat: my family, and my passion projects, and my work, and my faith in democracy and science and kindness and humans, but…
My eleventh grade English teacher told me sentences cannot ever begin with the word “however,” so I put them in the middle of sentences, or maybe a third of the way into sentences, like this: There is not, however, a guarantee that working hard for years and years on a project will guarantee the outcome I want. And also, this: I believe in myself and my strength; however, lots of powerful and gifted people never get what they want most. Continue Reading…
Many years ago, on a family vacation, we were playing a charades-like game. Our girls were young — maybe 11 and 8, or maybe younger — and I was paired with my younger daughter, Sammi. She is the “sunshine” for whom this blog is named, and at that age was a funny, silly little girl who laughed and made us laugh all the time. The word I was trying to act out was “crumbs.”
First, I mimed eating a big cookie. “EATING!” she shouted. “COOKIES! SANDWICH! MUFFIN!”
I shook my head and held one finger up with my eyebrows raised, willing her to wait. Then I pretended to notice something on my shirt. I looked down, pinched an imaginary speck of food off my shirt and put it in my other hand, pointing to it.
“CHOCOLATE CHIP?” Sammi yelled, bouncing up and down.
I shook my head again, taking another imaginary bite out of my imaginary cookie, then pretended to drop some of it on the table in front of me. I mimed wiping my fingers on my shirt to brush off all the particles of cookie, then pointed at the table.
Sammi paused, her eyes squinting as she thought about it. “FOOD LINT?” she suggested. Continue Reading…
My older daughter is away at college, so for the first time in her life, my younger daughter has me and her father to herself.
Well, only sort of the first time in her life.
When Sammi was born, a series of strange goings-on in her chest (trachea, voice box, lungs, esophagus) found her alone with us a lot — in hospitals, doctors’ offices, therapy practices, and in the car en route to and from all of these places. There was a lot of buckling her backwards into her car seat, for YEARS, tiny as she was, and driving her to this medical appointment and that one. We listened to a lot of Lori Berkner music when she was tiny, then recordings of Helen Lester’s book ME FIRST and Dr. Seuss’s THE LORAX and several other books that I could have recited for you at the time but now are just blips of memory, the oatmeal-colored cassette tapes rattling around in the tape deck of our manual-transmission Honda Accord.
We sat in all those appointments with a diaper bag — and then a tote bag — of coloring books and picture books and small toys, playing “I Spy” and running our index fingers over crowded pages in search of Waldo. We talked with her, distractedly, one of us sometimes jotting down notes and reminders of what we wanted to ask the doctor or what instructions we needed to get from the nurse. We were with her — we were ALWAYS with her — but sometimes I look back on those years and think that we were with her body but not really with HER. Continue Reading…