However

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…

But. However.

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…

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The Name for Crumbs

mandelbrot

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…

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Quality Time, Fifteen Years Later

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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…

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Going nowhere, slowly

I’m trying to teach my daughter to drive, but there’s nowhere to go. We order our groceries online for delivery, prescriptions come with a three-month supply, and school is taking place in our basement on a laptop. Where to drive?

Why, even?

But I’m doing it anyway, the same way I browsed grocery stores all gaggle-eyed and hopeful when our family followed the six-food-elimination diet for eosinophilic esophagitis ten years ago. My daughter was misdiagnosed, it turned out, but we didn’t know that as we ate food without dairy, soy, eggs, nuts and wheat. I pushed my cart around the store aimlessly, hoping for a surprise. Maybe, I thought, this brand will have discovered a secret combination of ingredients that tastes like what I remember, for once. 

Sometimes, that surprise DID come. I found that Fruity Pebbles, that horrible day-glo cereal my husband loved that made my throat hurt from the intensity of the sugar, fit the diet perfectly. I brought it home like a trophy, drizzled it with rice milk, ate it with a big fake smile on my face. Continue Reading…

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All the Paths from Stuck to Motion

all-the-paths

1.

I put on clothes before I go downstairs every morning. It’s a new rule, in my head, a ward against a world in which so many have switched to sweatpants and pajamas all day and in which I know I would roll slowly down into deep sadness if I didn’t put on real clothes. Pants, top, bra. Deodorant. Brush hair and teeth. Deep, deep drags on the morning inhaler as my city fills with the bored smoke of too many fireworks celebrating nothing. The path from the bed to the closet to the bathroom is the first trip I take every day, moving from another-day-like-yesterday to maybe-this-shirt-will-make-me-feel-better.

2.

If the clothes I’ve put on are running clothes because the air quality has passed muster outside, the path down the stairs to the back foyer is next. Sneakers. Little stretchy pouch for my inhaler and my key and, now, for a mask I sometimes pull out and clutch in my hand as I trod past Lake Michigan, making ten-foot arcs around septuagenarians walking in pairs. Go too far north and the path is clogged with people, forcing my mask over my face, so I go west, past the shoe store and the shuttered bakery and the tiny nail spas that can’t be doing well. Past the rose garden, past the funny goose statue they dress in giant bows and rainbow capes. I come back to my yard, panting, and sit at the picnic table to upload photos of flowers and waves to Instagram. All my photos are of flowers and waves and food, all the miracles I pin there to remind myself that they exist, still, even among all of this. Continue Reading…

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