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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Endoscopy Days

My daughter Sammi was four years old when she had her first endoscopy. Between that first one in June of 2010 and the most recent one in November of 2013, Sammi had more than a dozen endoscopies, each blending into the next, a routine and ritual that she has endured more times than she’s had annual physicals in her pediatrician’s office. She’s had more endoscopies than years on earth or last-days-of-school.

The day before an endoscopy, I always posted a request to my friends on social media to think positive thoughts and project smooth, pink esophageal walls, free from the eosinophils that represented disease. “Think pink” became one cousin’s regular response to my requests, and a local friend whose wardrobe tends toward black and grey regularly surprised me by wearing a pale pink top on endoscopy days, leaving me excusing myself to dry my tears in the bathroom.

Sometime in the afternoon that day-before, the hospital would call us to tell us when to arrive for the procedure. At a children’s hospital, the younger children’s procedures are always earlier in the day, since all children being put under general anesthesia have to fast for eight hours beforehand. As Sammi got older, the start-time for her endoscopies got later, a sign of how long she’d been going through this process.

Most often, we would have to be at the hospital early in the morning. Bleary-eyed but unexpectedly focused and efficient, my husband and I would pack everything we needed before waking Sammi and her sister Ronni. A friend would absorb Ronni into her home and morning routine long before school hours, and we’d drop her off on the way to the hospital. Often, Sammi’s grandmother would be waiting for us in the surgical waiting room, a new toy or fancy notepad in hand to distract Sammi as we filled in paperwork, collected a urine specimen cup for Sammi’s participation in a research study on eosinophilic esophagitis, and waited to be moved to a presurgical hospital room.

endoscopy dayIf Sammi was nervous during this time, she didn’t show it. By the fourth or fifth time, she had begun to remember the order of things, the friendly waiting-room concierge, and the forthcoming afternoon of movies on the couch at home when it was all done. She didn’t seem to dread it. Changing her into the gown and the awful paper underpants frustrated her, but we learned to do that at the last possible moment. Time alone with her grandmother, the TV in the room, and our steadfast cheeriness kept her from worrying.

None of that did a thing for me, on the inside, despite how collected I seemed on the outside.

According to a 2012 study by The Lancet, 34 people per million in the 1990s and 2000s died as a result of being administered general anesthesia. I assume that was 34 people per million surgeries. With every surgery, Sammi’s chance of dying rose ever-so-slightly, statistically-speaking. With every surgery, I became more and more concerned that this would be the one that killed her.

How many chances did she get?

How many chances did I get?

I walked her into the operating room every single time unsure of whether I would ever see her alive again, unsure of what the last words I would hear her say would be. That doesn’t mean that I thought she would die, but that I didn’t know for sure that she wouldn’t.

I sang her to sleep. I kissed her head. I told her I loved her, and I said goodbye.

Endoscopy days were hard. Really, really hard.

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What Will It Be?

hourglassThe methodology of the six-food-elimination-diet to treat eosinophilic esophagitis is this: the top six most common food proteins are eliminated from the diet for six to eight weeks. That means no dairy, egg, soy, nut, wheat, or fish products could cross my five-year-old daughter’s lips during that time. After that point, she had an endoscopy to see if, after removing all those foods — even foods prepared on the same equipment with those foods — her esophagus would no longer be coated with eosinophils, the nasty white blood cells that had congregated there, ostensibly to fight against whichever protein or proteins they saw as poisonous to her body.

That was step one: all six foods. The endoscopy showed no visual sign of any eosinophils, and multiple biopsies gave us the same result. The verdict? Ah-ha! The culprit must be one of those foods! Or two. Or all of them. But this diet — it worked!

Step two was adding a food to her diet and repeating the six-to-eight week elimination of all the other foods, and then following it with another endoscopy. The methodology was simple: add a food, let her eat it for a while, check the esophagus. If the esophagus is clear, that food is not the culprit. Then you add another food and try again.

This process took nearly a year.

During all that time, Sammi’s reflux-like sounds came and went, tricking us into imagining that we’d found the culprit, over and over. When she started eating eggs — the first food she chose to add back —  she started making that sound again, that urpy, gurgly sound, and telling us “the food is coming up again.” Ah-ha! we thought. It’s eggs!

But then, the day of her third endoscopy (the first was diagnostic, the second was after the full six-food-elimination), the doctor came out of the operating room and showed us a picture of Sammi’s smooth, pink esophagus. “It looks great,” he said. And the biopsy confirmed it several days later.

This meant we hadn’t found the culprit, and we were mostly glad — eggs were a favorite protein in our vegetarian home, and we didn’t want to lose them forever. On the other hand, it meant at least six more weeks of not knowing the shape our lives would take.

Would the culprit be soy? That would be hard but not impossible. We’d lose tofu and soy milk (our “milk” of choice in normal circumstances), and eating out might be hard, but that was doable.

Would the culprit be nuts? That would be our first choice — always well-labeled due to all the people with nut allergies, they’d be easy to avoid. More importantly, Sammi didn’t like nuts at all — something we mused might be a sign.

Would the culprit be wheat? This was the worst possible option for us — mostly for me. A passionate baker and utter cookie-freak, I would deeply mourn the permanent loss of our weekly challah at Shabbat dinner.

Would it be dairy? That would be easy too, I mused. Severely lactose intolerant myself, I already knew where to find dairy free cheese, yogurt, ice cream, baked goods. Vegan restaurants are fairly easy to find in our area. Even Starbucks has dairy-free milk.

We waited, six to eight weeks at a time, to find out how we’d live our lives. We waited, followed the regimen, experimented in the kitchen, and had no choice but to let the sand pass through the hourglass and reveal the future.

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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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