Swallow, My Sunshine: Limbo

Eosinophilic esophagitis does not have a cure.

There is currently no end for this disease, and little is known about what triggers it. Most of the time, it’s a food protein, though some children seem triggered by things in their environment. The food triggers can change over the years, which is what informed the comment I heard soon after my daughter’s diagnosis from the mother of another child with this disease. When I told her that I hoped my daughter Sammi would be one of the kids who responds well to an elimination diet and finds just one or two food triggers, she said, “They lose more and more foods as they get older. Eventually they all end up on the [meal-replacement] formula.”

So, during the fifteen months between Sammi’s remission and the relapse of her symptoms, I always knew it wasn’t over.

Those months were glorious; there’s no doubt about it. We ate at restaurants for a solid two weeks at first, every night, until I finally stared down my stove and cooked again. We tried crazy junk foods, had a donut every week before Hebrew school and resumed her daily Carnation Instant Breakfast in an effort to get her growing faster. We operated like a normal family, except for that nagging voice I heard in my head whenever anyone asked if Sammi was all better.

“She’s eating everything now?” they’d ask.Swallow, My Sunshine: Treats

Yes, I’d answer.

“So, what was it?”

And there was no answer. No answer and no answer and no answer, except that if Sammi was like the children that woman described to me, she’d lose foods later. I knew two things: what that woman told me, and what the doctor had told me, which is that in the history of his practice, only one of hundreds and hundreds of his patients had ever achieved an un-medicated, non-restricted-diet remission longer than one year.

I wasn’t buying it, this freedom. I watched her. I watched and watched, and I held my breath.

We traveled, gleefully without a cooler of “safe food for Sammi.” We spent money on any treat that Sammi looked at for longer than a few seconds. A year’s worth of photo album pictures reveals my explosion of food freedom: artfully decorated towers of cupcakes, homemade seitan and caramel corn and pastas, pot after pot of every kind of soup. Laboriously, I plucked out all the scraps of papers I’d left in my cookbooks to mark elimination-diet-friendly recipes, and I reread them to find recipes that appealed to us based solely on our taste. What was our taste? I’d nearly forgotten.

Despite all this freedom, she stayed little, stayed slow-eating, stayed balanced precariously between all the diagnoses she’d ever had and healthy. It was limbo.

Though I didn’t know when, I knew we’d have to pay for this unfettered time together someday. Sammi’s pediatrician had told us that when something goes wrong in fetal development, as it had for her when her aorta failed to fuse into one artery while she was still growing inside me, it is rarely just one thing. There had been a pause — a hiccup — when her body skipped a step. Babies don’t grow just one atom at a time. Whatever builds itself up at the same time as that aorta develops might be tilted or tucked or half-made too, and so during those months without regular hospital visits and specialists, my imagination lingered over the systems of her body which hadn’t yet been scrutinized. Would it be her brain next? Her reproductive system? Would her vision fail?

Or would it be nothing? Would I spend my time as a mother looking for problems instead of focusing on gratitude for what was right about her?

Limbo. Purgatory. Who was I, and who was she? In the meantime, we ate our cupcakes, enjoyed first and second grade, and allowed ourselves just a few deep, cleansing breaths.

Swallow, My Sunshine: Cupcakes

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One thought on “Limbo

  1. What a brave story! Thank you for sharing it!

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