Pink and Smooth

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. Continue Reading…

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One Food at a Time

Five years oldThe words “elimination diet” implied, when I first heard them, the opposite of the process through which we put our five-year-old daughter. I thought an elimination meant taking things out of the diet, one by one, until Sammi felt better and her esophagus ceased to have eosinophils coating its walls. In reality, the process worked in reverse. This was what her fifth year looked like: Continue Reading…

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Mother Blessing

tostados

More than ten years ago, I attended a mother-blessing, also known sometimes as a blessingway, for one of my closest friends. Andrea was due shortly thereafter with her second child, a daughter. Surrounded by a small group of powerful, loving women, Andrea and her still-gestating daughter were touched by healing hands and given tokens of energy and affection in the form of beads to make a bracelet Andrea could use as a focus in labor.

Mid-way through the evening, we gathered in the kitchen of the host, Andrea’s friend, for food and drink. She bustled around in front of the stove and returned with a steaming ceramic bowl of refried black beans, smelling strongly of garlic, and a platter of corn tostados. We all slathered the crunchy, oversized tortilla chips with the savory beans, and I knew that, perhaps in small part due to the circumstances heavy with love and support, I’d fallen in love with a food. Continue Reading…

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Endless Meals

Sit down and finish your dinner.

Are you done or are you just distracted?

All the rest of us are done. Could you please eat your dinner?

Just FINISH. If you want that food, then EAT IT.

For CRYING OUT LOUD, Sammi, FINISH YOUR DINNER!

I can’t sit here with you anymore. Eat what you want and then bring your dish in.

My husband and I had decided early in our children’s lives that we would eat together as a family whenever possible. We had both grown up that way, largely, and especially given the research that showed how valuable a family meal is to raising connected families, we’ve maintained this policy even as our children have gotten older and busier. Seated at the end of the dining room table closest to the kitchen, the four of us have always used the time together in the traditional manner — catching up on our days, joking around, planning family events together.

But when we were done, there was Sammi. Still sitting there. Still eating.

Unlike other families I knew who struggled with a picky child at mealtime, Sammi’s issues were seldom that she was refusing to eat what was on the plate in front of her. In fact, if we suggested that she might be finished, she would often tell us that she was still eating. Then she would take a bite, chew it slowly, and begin a conversation. Five or six minutes later, we’d realize that she was not using the time when someone else was talking to take another bite — instead, she was watching, nodding, interacting, but not eating any more.

Pick up your fork and put some food on it, we’d say, rolling our eyes. You know how to eat. Just eat your dinner!

Thirty minutes would pass, and the other three people at the table would be long done with their meals. We’d linger, chatting. Maybe one of us would get up to switch a load of laundry, rifle through the mail, answer the phone. Those left at the table with Sammi would keep chatting, fussing with our dishes, maybe having another helping of something, just to pass the time.

An hour after sitting down, Sammi would still be spearing pieces of food, now long-cold. By now, her sister Ronni would be off and playing, or reading a book in a chair nearby. Either David or I would have lost the ability to sit at that table a moment more, and would be in the kitchen doing dishes or hanging out with Ronni. The parent left at the table might start reading to Sammi or to him or herself in an effort to stave off the frustration and boredom of still being at the dinner table.

After ninety minutes, it would be nearly bedtime. If Sammi was still sitting at the table with her food, we often began a countdown to the end of the meal.

In ten minutes you need to get ready for bed. Eat whatever you can finish by then.

Bedtime is coming in five minutes. Finish.

It’s almost time to go upstairs!

Dinner time edged right up to bedtime for years and years. There were never, ever any family board game nights. We seldom had dinners in front of a movie, lest the adults lose our focus or vigilance over the state of Sammi’s plate. A summer walk at sunset? Never — we were still at the dinner table.

It helped to know that Sammi’s slow eating was likely a symptom of eosinophilic esophagitis, or reflux, or both. It helped, but not enough. I kept feeling that nagging, nagging sensation in my own belly — something else was wrong. This was nearly her only symptom. Why did the problem of slowness persist even with drinking? She drank like a toddler even at age 8, puffing her cheeks out to fill them with water and letting it down a tiny bit at a time. It seemed wrong. It seemed strange. I sat there, night after night, staring at Sammi eating in slow motion, musing and, despite myself, fuming.

We watched her, the sound of doctors labeling her “failure to thrive” whispering through our heads as she delicately balanced four peas on her spoon. Feed her more calories, they told us. She needs more nutrition, they insisted.

Let THEM try, I thought, over and over, waiting for the end of another interminable meal.

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Kindergarten Numbers

kindergartenOn the first day of kindergarten, Sammi was still in the midst of the six-food-elimination-diet. There was no peanut-butter-and-jelly sandwich in her lunch — no goldfish crackers, no chocolate chip cookies. I can’t remember exactly what it was, but my best guess is that it was a thermos of rice and beans, some fruit, maybe some vegan chocolate chips.

She was excited for school. We were nervous — not because of separation anxiety, fear of a too-challenging academic environment, or worry that she wouldn’t make friends. She was happy to go, smart and curious, and looking forward to being in the same class with her best friend. We were nervous because she’d be surrounded by food she couldn’t have and people who might not understand why.

Before school started, we met with the principal, the district health clerk, and her kindergarten teacher to set up a 504 plan. Unlike an IEP (an Individualized Education Plan), which creates a set of legally enforceable accommodations for students with one of 13 specific types of learning disability, a 504 plan is an option for students whose special needs fall outside those concerns and is designed mostly for use in a general education environment. It’s sometimes called a “health plan,” as it is commonly used for students with allergies, asthma, diabetes, etc. — things that don’t necessarily create a learning issue, but need to be managed during the school day. A great comparison of IEP vs 504 is available here.

Sammi’s 504 plan was fairly simple. It required that:

  1. No one at school was permitted to give her any food that I hadn’t sent from home. A lidded, clearly labeled box in her classroom held a variety of snacks I replenished as needed.
  2. All wheat-based dough (Playdoh) was removed from her classroom and, as necessary, from the art room.
  3. Reasonable notice for special treats provided by the school would be made to us so that we could provide an alternative for Sammi.

Her teacher was warm and lovely and went out of her way to make the process easy for us. She sent a snack-day signup letter home to all the parents in the room letting them know that there was a student in the room with special food allergies — an easier way to explain it than to describe eosinophilic esophagitis — and letting them know that they were not required to send special snacks, but that unpeeled oranges and bananas would allow that student to take part.

Some parents sent unpeeled oranges and bananas on their child’s snack days. Some didn’t. Sammi was fine with that.

Only twice that year did we run into trouble with noncompliance with that 504 plan. One day, Sammi came out the door of the school with her head low and her lip trembling. “Everyone got POPSICLES,” she said, “because we had a great first month of school.”

“Who gave them out?” I asked, hoping it was a surprise from a parent who didn’t know.

She named the principal, and said that he had tried to give her a popsicle twice, even after she said she couldn’t have it. “He said I COULD have it, that everyone could have it! But I said you didn’t send it, and he just gave my popsicle to someone else.”

Angry and said, I turned and saw the principal a hundred yards away, standing by a school exit. Asking Sammi’s sister to keep her company, I approached him and asked why he hadn’t let me know that he’d be giving popsicles to everyone. He said he didn’t tell anyone, that it was a surprise. I reminded him that he’d tried to give one to Sammi despite her 504 plan, and he said, “oh — but she didn’t eat it, right?”

I took Sammi home and made her homemade banana-peach popsicles. There was no point in arguing.

The next time it happened was after Sammi had passed through the most restrictive phase of the diet and had been given permission to eat eggs. The school social worker had high-fived her in the hall, and she’d been excited to bring a hard boiled egg in her lunch all week. We were all feeling free and grateful with just that one food returned to her, but truly, her diet was still quite limited. No dairy, wheat, soy, or nuts were allowed. When her gym teacher rewarded the class with cookies, she asked if they had things she wasn’t allowed.

“Go on, take it,” he told her, according to Sammi and her friends.

“No, I can’t,” she responded.

“Who wants Sammi’s cookie?” he offered loudly to the rest of the class.

That time, Sammi came home crying. On further investigation, I learned that the gym teacher hadn’t bothered to read the 504 plan provided to him because it was left on top of his mailbox and not inside it.

In the years since Sammi was in kindergarten, I’ve come to ache for the parents of allergic children who have to place so much faith in others to keep them safe. Had Sammi eaten a “forbidden” food, she would not have died. She would have simply had to restart that phase of the diet — each phase six weeks long. It was hardly the end of the world, but if she’d been dangerously allergic, it could have been.

A five year old should not have to be responsible for her own life.

A parent shouldn’t have to arm a five year old with that level of self-preservation skill.

For these two affronts, I’ve never quite forgiven the educators who ignored Sammi’s needs. Her kindergarten year was compromised enough.

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