Erased

samminecklaceBetween July 1, 2010 and April 10, 2011, I prepared over 800 meals that excluded some combination of dairy, egg, soy, nuts, and wheat.

Over 800 times, I checked and double-checked against the current list in my head. What is she allowed to have today?, I asked myself as the restrictions lifted, one by one. I paused as I used my mixing bowls, contaminating them with the newest addition, knowing I might have to throw it away if this food trial was a failure. I paused as I asked Sammi if she liked the newest recipe, worrying about the possibility of taking it away again later. I paused and paused again, rethinking each ingredient and each interaction around food.

When Sammi passed every food trial, her doctors could not explain it. They shrugged, confused, and sent us on our way. After more than 800 meals governed by rules and restrictions and embarked upon with my shoulders squared and my resolve set, the journey was over. We were at square one: all choices available to us, all foods a possibility, the road ahead open.

It was an unbelievable mindfuck. Continue Reading…

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Happy Thoughts

My daughter Sammi, for all the challenges she’s faced in her life so far, has always been able to embrace tiny moments of happiness. In part, I think it is because of a practice we started with her older sister before Sammi was even born; we call it “your happy thoughts.”

Here’s how it started: each night before bed, Sammi’s older sister Ronni would worry about bad dreams and, as a result, have trouble falling asleep, missing us even if we were just downstairs. We did not want to sit in her room until she was asleep, so we began giving her three happy thoughts to think about as she lay in bed. These were small thoughts for her small age, and they came from the day we’d just had or the day that was coming: the picture we drew on the sidewalk, the phone call with her grandparents, the plan for a zoo visit the next day. Her job was to think about those things while she waited to fall asleep.

happythoughtsWhen Sammi was born and old enough to talk before bed, we did this with her, too. “Don’t forget my happy thoughts!” both girls have reminded us if we try to leave their rooms at night without discussing them. In the last few years, we’ve asked both girls to generate their own happy thoughts, and when things have been hard for them, we’ve sent them out into the world in the morning to find their happy thoughts. Even before “daily gratitude” was in vogue, we had our happy thoughts at the end of the day. During times of intense medical drama with Sammi, my husband David and I have sometimes discussed our own happy thoughts as we lay awake at night, worrying. 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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