Surprises are foolish things. The pleasure is not enhanced, and the inconvenience is often considerable. -Jane Austen
In early June of 2011, my daughter Sammi had the final endoscopy in a series of eight, each one marking a phase of her six-food-elimination diet for eosinophilic esophagitis. Each scope after the first one — the one that provided the diagnosis — was to test for the effect that a food had on the surface of her esophagus. A negative reaction would look like eczema in that muscular tube running from her throat to her stomach — patches of white, clustered cells, sometimes so thoroughly irritated that long, deep ridges would form, as though the disease itself had run a fingernail down the tissues there. That was the state of things when she had been diagnosed in June of 2010.
After removing eggs, dairy, nuts, wheat, and soy from her diet entirely, her esophagus looked perfectly healed. “Pink and smooth!” we told her, ecstatic, describing the state of her esophagus, which looked glowing and satiny after that six week diet made up largely of fruit and lentils and rice.
“Pink and smooth!” we joyfully exclaimed after adding eggs back to her diet had no ill effect on her gullet.
“Pink and smooth!” we exhaled with gratitude when soy proved safe as well.
“Pink and smooth,” again with nuts and with wheat.
When dairy, the last food, came back in her diet, it stood to reason that it would be the culprit. Having all 6 foods in her diet gave her a bad scope, and all 6 foods out of her diet gave her a good one that eggs, soy, nuts, and wheat couldn’t take away. It had to be dairy.
It had to be.
But it wasn’t.
On the day of her last endoscopy of 2011, after six weeks of dairy that we thought would be her last weeks of dairy-eating for life, we waited by her bed in the recovery room to see the doctor. We knew what to expect — he would bring us the photo he took in the operating room, it would look just like the one we’d seen when she was diagnosed, and we’d go home and live a life without milk products — so much easier than the year we’d had, and so much better than many children with eosinophilic esophagitis can expect. We were calm and prepared.
The photo he brought us looked suspiciously like all the ones he’d shown us for previous scopes that were “clean.” I looked at him, confused. “Is this from today?,” I asked.
“It’s from today. What do you think, Mom?” the doctor asked me.
“I think it looks…good?” I answered, squinting at it.
“It sure does,” he said. “We’ll call you with the biopsies to be sure, but her pictures have always matched her biopsies so far.”
David and I spluttered, stumbled over our words, barely had a chance to ask “what does this mean?” before the doctor was gone. He often did a dozen of these endoscopies a day, all the kids like Sammi right in a row, reaching down esophagus after esophagus for the cells that attacked his patients. He walked away, and we were left with no explanation, no answer for Sammi, who would wake up soon and ask us if it was pink-and-smooth, even though we’d told her it would not be this time.
It had been a year. The biopsies this last time also came back clean, normal, unblemished, perfect. No eosinophils.
She was…cured? In remission? Nothing we had read anywhere had prepared us for this. We had never heard of any child diagnosed with this disease who had resolved with, from what we could tell, absolutely no dietary restrictions or medications. Her doctor had not, either.
Two months later, at Sammi’s 6th birthday party, I ordered her an elaborate and extravagant cake shaped like the macaroni & cheese she had missed so much, and I offered this toast to our family and friends:
A year ago, this was a very different party. David and I were scared and stressed about what was going to happen over the course of the coming months. As I tried to figure out how to make a birthday cake with no wheat, soy, egg, dairy, or nuts, I went back and forth between feeling sorry for all of us and feeling grateful that she could eat any food at all, knowing that so many children with eosinophilic esophagitis end up having birthday cakes made of flowers or balloons. We didn’t know, at that point, whether that was Sammi’s destiny too. In this family that loves and celebrates food, throwing a party where the food seemed so limited and forced felt totally wrong. I worried that not only was Sammi suffering, but so was everyone in the family. What kind of a party was it without M&Ms, pizza, or the family taco dip?
I learned, at that party and over the course of the next year, though, that it was exactly the same kind of party we always had. Shame on me. We had the most important things, then and all year long: all of you. We had people experimenting with foods for us, calling me from grocery stores and reading me ingredients lists, buying disposable pans and cutting boards, inviting us to their houses with offers to do whatever was necessary to make it possible to be together in an environment that was safe for Sammi. No one turned their noses up at our cooking experiments. I am sure there were plenty of polite bites and smiles for our benefit. No one made us feel like outcasts, no one left us out, and through all the scary things we felt all year, we never felt alone.
At the heart of all of it was our Sammi, buffetted on all sides by intense, deep, positive-energy-enhanced love. No wonder her favorite color is pink: you all sent thoughts of pink, smooth esophageal walls her way all year. All children are loved; this child was loved so completely and with so much focused concentration by all of you that you loved the disease right into remission.
And so…we waited. “Come back for a clinic visit in six months or so. Call us if she seems different. I don’t know what else to tell you, Mom,” her doctor told us.
The truth is that doctors can’t always explain everything, but I needed an explanation beyond, “Your daughter is just special.” Twelve months, thousands of dollars worth of strange foods, eight endoscopies, sleepless nights and days of churning worry — all ended in a surprise that should have dropped me to my knees in gratitude. And while I was grateful, and I was glad to see Sammi free to eat anything she liked, I was deeply troubled.
Something nagged at me. It would not go away for many years. The story was not over.