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.

For me, who governed the meal preparation with a focus that could not be shaken, I admit that my difficulty with this result was hard to explain. “Aren’t you so relieved?!” people asked me. “She can eat anything! She beat the odds! She’s CURED!”

I smiled and said that it was wonderful to let her eat whatever she wanted. Indeed, it was. I sent her to day camp that summer without a cooler of snacks, and she sat at the picnic tables with her friends and the dixie cups of Cheezits, happy as a clam. When I arrived and observed her from a distance, my focus soft and relaxed, she looked like everyone else, and I was glad. Whenever I went home and made an easy box of macaroni and cheese for lunch, though, I made it in the pots I had bought to replace my contaminated ones at the beginning of the diet, and I tensed, wondering: what was all of that FOR?

It has been four years since the end of her six-food-elimination-diet, and when I asked her about it recently, she said she can’t remember it. She remembers the endoscopies, the days of recovery on the couch with a sore throat, but she has no memory of my all-day cooking frenzies, the panicked reading of ingredient lists, the nights when I tearfully threw away a pan of inedible mush and fed everyone gluten-free soy-free nut-free vegan pancakes for dinner. She cannot remember the box of special snacks in her kindergarten classroom, the one I decorated cheerfully with her name on it so that she’d have something to eat when kids brought in snacks she couldn’t have. She remembers none of the struggle we went through to feed her.

Without question, I am grateful for that. In part, it means that we did our job, leaving the worry to the grownups and keeping her life as normal as possible while it was truly strange behind the scenes. She remembers her kindergarten teacher, being on the hip-hop dance team, and the swings of the kindergarten playground. That is as it should be. That was what I’d hoped she would remember.

But then when it was all done, I was the one who remembered it best. I mourned the year I spent doggedly following the rules to get an answer to a question that, in the end, had become moot. What is making her sick? became forget it, she’s actually fine.

We had almost a year-and-a-half like that, not knowing, unrestricted. Without the fences around her health, I didn’t know how to focus my wonder. What would be next? After chasing my own tail, I was left bereft — guilty for wanting the validation, guilty for not living in the moment of gratitude.

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9 thoughts on “Erased

  1. I 100% *get* this! After two healthy daughters, I was given my son who spent his first years extremely sensitive to both dairy and corn. I, too, became and obsessive label reader and getting him food at restaurants was nearly impossible. Luckily he seems to have outgrown the worst of it and we’ve been able to ease up on the restrictions but I still find myself reading those labels and obsessively watching as he puts something new in his mouth! It has definitely been the hardest part of my mommying journey up to now.

    • It is CRAZY hard. So hard. No one gets it until they’ve dealt with it. I used to dream about labels all night. Hang in there!

  2. You are an incredible writer. I just wanted to say that. I hope to stay in contact! 😉

  3. Wow… Hats off to you mom! There are no limitations on the extremes we go to for our children. You’re a hero. 🙂

  4. […] didn’t happen that year. It didn’t happen that summer after she was “in remission” from eosinophilic esophagitis, either, and at age six, entering first grade, she started hearing […]

  5. My daughter is now on the 6 food elimination diet due to eosoniphilic eosophogitis. Your blog was helpful.
    Can you share with me how your doctor explained sammi’s disease if in the end she wasn’t allergic to any of the foods?

    • Shevi, first of all, I wish you so much patience and good fortune as you slog through the elimination diet. It was very hard for me even though I am a very adventurous and dedicated cook with time to work through it. If you run into any foods that your daughter would love to have but cannot on the diet, please get in touch with me so that I can try to help you make a safe version of that for her. I like the challenge, but even more, I love the idea of returning a moment of joy to a kid (and a family) in that situation.

      Secondly, I can give you half the answer to your question now. If you keep reading, you’ll see that in my latest post, Something Missing, I mention that Sammi’s diagnosis changed in 2012 to PPI-REE, or Proton Pump Inhibitor-Responsive Esophageal Eosinophilia. That means that her esophagus responded favorably to huge doses of Prevacid. That was our answer at the time. If you keep reading over the next few months, I’ll finish the story, which revealed other issues as well.

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