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.

10Q is a web site that asks you ten questions each year during the Days of Awe and then saves your answers in their “vault” for a year. During the next year’s Days of Awe, 10Q emails you a link to read your previous answers. It is a simple set of questions that prompts you to reflect honestly on what has happened to you, what you hope to see and manifest, and then, a year later, gives you the chance to assess your work. It’s so easy, and so powerful, that I am shocked that it hasn’t gotten more press.

As I peruse three years’ worth of questions and answers, one stands out to me. In 2013, this question was posed: “Think about a major milestone that happened with your family this past year. How has this affected you?”

My answer:

Sammi’s EE relapsed, was renamed PPIRee, and we’re in the process of futzing with her medication. It’s frustrating and yet another reminder of how life-long and cylical (unpredictably so) the management of her health will be. I’m sad that this is such a big part of our relationship, and the mourning of that seems to come right behind every new setback.

I read these words and flash back to the scenes that punctuated that autumn of 2013. Over the summer of 2012, almost eighteen months from the last time she’d taken any medication for her esophageal issues, she began making the sounds of reflux again. She remained cheerful about it — “it’s just my cereal in my mouth again, Mommy” — but the sounds chilled us. Her eating slowed even further, and a check-up with her gastroenterology team had resulted in a follow-up endoscopy that revealed the return of eosinophils. She had relapsed, and with no foods having ever been identified as specific triggers, her doctors had no idea what to remove from her diet. In a desperate move, they had put Sammi on a high dose of the proton-pump inhibitor Prevacid.

It worked.

Shutting down nearly all the acid production in her stomach, using a dose that was at least double the recommended one for a child her size, completely reversed the growth of eosinophils. At the next endoscopy, they had disappeared. I knew beforehand, though, that her scope would be clean, because for the first time in her entire life, one day in December of 2012, she took my hand as we browsed a bookstore in the late afternoon and asked me, “Mommy, are we going out to dinner soon? Because I’m starving.”

Starving. She was starving. She’d never once in her life before that day even told me that she was hungry, let alone starving. I’d never gotten us seated at a restaurant as fast as I did that day.

Over the course of the months after that day, we learned about the emergence of a new diagnosis called PPI-REE, short for “Proton Pump Inhibitor Responsive Esophageal Eosinophilia.” Sammi’s gastroenterology team switched her diagnosis to PPI-REE and gave her a good, long stretch of that high dose before they started to experiment with it. Proton pump inhibitors like Prevacid are meant to be taken for a very short time, but Sammi had spent more than half her life to that point taking them. Acid in the stomach helps break down food into its nutrient parts. With no acid in her stomach for so long, the doctors worried about how much nutrition Sammi could absorb. They began to lower her dose.

In the fall of 2013, after I completed that 10Q for the year, Sammi’s health deteriorated further as the doses of Prevacid got lower. In October, I sent this in an email message to her medical team after they cut her dose in half again:

“The symptoms (gagging, coughing, regurgitating followed by pain in her throat) began in earnest on Friday and seem to be getting worse each day. On average, we have probably heard her gag/cough about half a dozen times a day or more. Tonight’s dinner was interrupted many times as she stopped to gag and cough, eventually just asking us if she could please stop eating.”

That 10Q answer in the beginning of this post betrays the frustration, the exhaustion, and the worry that permeated our relationship with Sammi. I wanted more out of my parenting and out of her daughter-ing — I wanted space to see beyond the clothes she seldom outgrew, the food that sat untouched on her plate. I wanted to have more meaning in our relationship instead of feeling the constant tug on her survival. The sense of doom that settled on me as I stared down what felt, at the time, like a pattern of sick-well-sick-well-sick, is obvious in that message. Introspection about what I wanted out of my relationship with Sammi was almost pointless when, most of the time, my dearest wish was for her to finish her dinner.

I sought the meaning, but all I had was the surface. These annual questions became my touchstone, bringing me back each fall, heartbroken, to what I really wanted.

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2 thoughts on “Something Missing

  1. You are amazingly even handed with knowledge and emotion in your writing. Learning about Yom kippur and esophagus conditions in one post is usually unheard of:) that information made interesting and pulling on my heart- well that’s nearly impossible. You have succeeded. Continued strength to you!

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