Category Archives: instinct

Something Missing

10qmoreThe ten days between the beginning of the Jewish new year (Rosh Hashanah) and the Jewish day of atonement (Yom Kippur) are sometimes known as the “Days of Awe.” Many Jews feel the pull of either ritual, tradition, or introspection during that time of year. My fairly typical Jewish familial history included new outfits for synagogue, time-consuming baking and cooking for the holidays, and, only peripherally, some discussion of what the year behind had meant and what the year to come would bring.

All of that changed with the birth of my children. I found myself looking for some pieces of meaning to take from the holiday beyond the trappings of fashion and coffee cakes. I listened to the rabbi’s sermons, started reading the commentary in my prayer books during services, and seriously observed tashlich — the ritual of throwing bread crumbs in the water to discard the previous years “sins.”

And then, in 2012, I discovered 10Q. Continue Reading…

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Limbo

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. 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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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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