Sister in the Periphery

girlsThe story of a sick little girl is compelling. The story that spans across years of doctors and procedures, melting into each other in a pool of brackish gloom, punctuated by moments of glittery hope — that’s good reading, right there. You want to know: did she get better? did they figure out what was wrong? how did it all turn out?

That’s the story I’ve been telling about our family, and it’s true. It has driven every other decision in our life, in one way or another, for as long as our younger daughter, Sammi, has been a force on this earth. Figuring out how to keep her healthy, to help her breathe, to feed her and manage her doctors’ appointments and procedures and surgeries, to hold my own head up and make it through my own fears each day: these are the things that dictated the way we navigated the world.

But there is another story in the periphery. We have another child.

I don’t write much about my older daughter Ronni largely because she is now thirteen. She deserves the right to decide what information about her goes public, and so I’ve refrained from sharing her experience so far until now. Until yesterday. Continue Reading…

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When It Looks Like a Blueberry, It’s Probably a Blueberry

blueberry

My daughter Sammi was born at 41.5 weeks of gestation at four pounds and eleven ounces. I have spent the last ten years reciting those statistics in reverse.

“So mom, what was her birth weight?” is often one of the first questions a pediatric specialist asks.

A pause for my answer, and then I could chant it along with them: “So was she premature?”

No, she wasn’t, I have to answer. She was what they call post-term, which is the opposite of premature. It’s late. She was waiting it out inside me, and then when she came out as tiny as a premature baby, everyone scrambled. She was totally proportionate — filled out and lovely, just miniature. The hospital did genetic testing and found nothing out of the ordinary. That’s when we began to hear two different lines of justification for her size. Continue Reading…

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Waking Up to the Pill Cutter

pillcutterIt was the summer of 2011 when, with no swallowed steroids and a totally unrestricted diet, my daughter Sammi was declared to be “in remission” from eosinophilic esophagitis, the disease with which she had been diagnosed almost exactly a year prior. Though we had turned our lives upside down to follow the prescribed elimination diet — including replacing our cutting boards, pots and pans to avoid potential cross-contamination — we were suddenly thrust, untethered again, into “normal life.”

Except one thing. Continue Reading…

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Sammi’s Restaurant

When Sammi was a feisty three year old and we were still unclear about why she ate so slowly and with such unusual habits, I tried to entice her to eat heartier foods by inviting her to cook alongside me. It was a method recommended anywhere I sought help with “picky eating,” even though she wasn’t picky in the way that most people described their picky-eating children. She tried a great many things — always willing, often surprisingly eager — but seldom more than a few bites. Cooking together — particularly baking together — was my attempt at imbuing food with a kind of positive energy. It was Jewish-mama-mojo, those afternoons when I plopped her on a stool next to me and held her little hand as it dropped flour in a bowl, stirred eggs, drizzled oil. Continue Reading…

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Mother Blessing

tostados

More than ten years ago, I attended a mother-blessing, also known sometimes as a blessingway, for one of my closest friends. Andrea was due shortly thereafter with her second child, a daughter. Surrounded by a small group of powerful, loving women, Andrea and her still-gestating daughter were touched by healing hands and given tokens of energy and affection in the form of beads to make a bracelet Andrea could use as a focus in labor.

Mid-way through the evening, we gathered in the kitchen of the host, Andrea’s friend, for food and drink. She bustled around in front of the stove and returned with a steaming ceramic bowl of refried black beans, smelling strongly of garlic, and a platter of corn tostados. We all slathered the crunchy, oversized tortilla chips with the savory beans, and I knew that, perhaps in small part due to the circumstances heavy with love and support, I’d fallen in love with a food. Continue Reading…

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