Category Archives: friends

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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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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Lentils I Have Known and Loved

lentilsThere has so far been no restrictive diet in our strange, medically-fraught life that did not allow for the consumption of lentils.

Green lentils. Brown lentils. Red lentils. We have eaten our weight in lentils over the course of the last nine years. Lentils in stews, lentils in soups. The sound of dried lentils hitting the bottom of a pot, the bottom of a glass measuring cup, the floor: this is the soundtrack that precipitates the lowering of my shoulders from my ears, the loosening of my jaw from a clench, the finish line of a racing mind. We can always eat lentils. I can always make lentils.

Dairy free, egg free, soy free, nut free, wheat free, vegetarian, reflux-safe, fat free — all these diets accommodate lentils.

There’s nothing more profound in my life than these tiny, life-giving legumes. That sounds silly, but it is true. When all meals sounded strange, lentils were a constant. This compilation of recipes is a love letter to lentils.

HONEY BAKED LENTILS

I found some variation of this recipe on the web many years ago. It is a dump-it-in-the-bowl-and-cook-it easy dinner, provided you can be home for 90 minutes while it cooked. I can hastily prepare the ingredients and throw it all in the oven. Half an hour before it’s done baking, I can make a pot of rice, and dinner is done. In a time when I often had to make the ingredients in order to assemble the recipe for dinner itself, this was a blessing indeed. *Dairy-free *Egg-free *Nut-free *Wheat-free (if you use tamari or coconut aminos not soy sauce) *Soy-free (if you use coconut aminos) *Reflux-safe *Fat-free (if you skip the olive oil)

Ingredients:

1 cup red lentils
2 cups water
2 tbsp honey
2 tbsp soysauce or tamari or, on a six-food-elimination-diet, coconut aminos
2 tbsp olive oil
1/2 tsp ginger
1 clove garlic
1 small onion
salt & pepper to taste
Optional: add chopped carrots, sweet potato, or squash and just a little more water.

Preparation:
Bake in a covered dish at 350 until tender (about an hour and a half). OR…dump it all in a crockpot on low for 3-5 hours.

TAMARIND LENTILS & CHICKPEAS

I found the basic version of this recipe in Veganomicon, the amazing cookbook by Isa Chandra Moscowitz and Terry Hope Romero. I adapted it so that it would accommodate both a reflux-safe diet (no tomatoes, which is why I substituted pureed pumpkin) and a day when we were low on lentils (the horror!), so I added chickpeas. In an often otherwise-low-fat, low-protein diet, this recipe has lots of both. Unlike the recipe above, this is what my mother often calls a “potchke” recipe — lots of fussing, many pots, kind of time-consuming. It is outrageously delicious. Serve it over basmati rice.
*Dairy-free *Egg-free *Nut-free *Wheat-free (check your garam masala to be sure) *Soy-free *Reflux-safe

Ingredients:
3 tbsp coconut oil
3 cloves garlic, minced
1 tsp ginger
1 large onion, diced
1 tsp garam masala
1/2 tsp cumin
Pinch of cayenne
1/2 cup dried lentils
1/2 cup canned chickpeas
2 cups veg broth
2 tsp tamarind paste (available in most health food or Indian food stores)
1 tbsp maple syrup
2 tbsp pureed pumpkin (from a can is fine…possibly pureed sweet potato would work too)
1/2 tsp salt

Preparation:
Melt coconut oil in heavy-bottomed pot with a lid. Add garlic and ginger and let sizzle for 30 seconds. Add the onion and fry until translucent and soft. Stir in garam masala, cumin, and cayenne, and stir for another 30 seconds until the spices smell fragrant. Add lentils, chickpeas, and veg broth, increase heat to high, and bring the mixture to a boil. Stir and lower heat to medium-low. Partially cover and simmer for 25 minutes, stirring occasionally, until the lentils have absorbed all the liquid and are very tender. This will be very thick.

In a small cup or bowl, combine tamarind, maple syrup, tomato paste/pumpkin, and salt. Scrape all of this mixture into the lentils and stir completely to dissolve the flavorings. Simmer for another 4-6 minutes and serve immediately.

GREEK LENTIL STEW

This is a staple dish of my whole community now, after my friend Clare began making it for every potluck. It’s cheap, it’s tasty, it’s open to endless variations, and almost anyone can make it. The smell of the bay leaf is a signal to my younger daughter that it’s cooking and also that she can count on several days of it in their lunches. A big batch of basmati rice rounds this out. This recipe initially came from Laurel’s Kitchen, an iconic cookbook.
*Dairy-free *Egg-free *Nut-free *Wheat-free (check your garam masala to be sure) *Soy-free *Reflux-safe (if you omit the tomatoes *Fat-free (if you omit the olive oil)

Ingredients
2 cups dry green/tan lentils
8 cups water
1/2 onion, chopped
1 small carrot, chopped (sometimes I add more because I love them)
1 celery stalk, chopped
1 small potato, chopped
2 tbsp olive oil
2 bay leaves
1 to 2 tsp salt
1 can or about 2 cups chopped tomatoes (omit for a reflux-safe diet)

Preparation:
Put everything except the tomatoes in the pot and cook until the lentils are soft, about an hour. Add the tomatoes for about 3 minutes. Mix, cook for a few minutes more, eat over basmati rice.

Finally, a lentil story:

Once, when I was sick with the flu and strep throat at the same time, a friend showed up at my door, unbidden, with a steaming glass dish of lentil stew. Gratitude is not a powerful enough word for what I felt as I spooned this concoction into my mouth from under a mountain of blankets on my couch. It was sweet but not cloying, savory and soft and tart all at once. I’ve come to associate the taste of it with the feeling of being cared-for without asking. Few people mother the mothers when their own mothers are far away. This dish made me remember the soup I ate as a sick child — not in flavor, but in sentiment and healing properties.

It was the Stewed Lentils & Tomatoes recipe from Smitten Kitchen, who in turn adapted it from The Barefoot Contessa at Home. I have never made it as well as my friend did — but it’s still fantastic. *Dairy-free *Egg-free *Nut-free *Wheat-free *Soy-free *Fat-free (if you omit the olive oil)

Lentils are little tiny round magic-beans to me. Thank you, lentils!

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Delicious Compassion

Between the beginning of July and the end of September, 2010, our family ate a diet that was vegetarian, dairy-free, egg-free, soy-free, wheat-free, and nut-free. As part of the treatment protocol for eosinophilic esophagitis, the “six food elimination diet” was supposed to remove the worst potential allergens from my daughter Sammi’s system, hopefully healing her esophagus and giving us the chance to add the offenders back one at a time later until the real culprit was found. The full elimination portion of the diet was just plain awful.

While the rest of us could sneak off and have such luxuries as omelets and almonds and bagels, Sammi was living this diet 100% of the time. We did everything we could to make it palatable; we made elaborate fruit salads and learned to cook ridiculously complicated foods. We spent a lot of time at the farmer’s market, trying new produce. We went to the beach. Our friends and family circled the wagons and did what they could. In all of this, I can only really remember snapshots — the most powerful moments preserved in a visceral feeling of either dread or deep relief.

Snap. My friend Christine arriving at daycamp with her children and a pan of crispy rice treats made on parchment paper with gluten-free cereal. “I poured boiling water over my spatula,” she said. “And the pan was brand new, but I used parchment paper just in case.”

Snap. My mother-in-law coming to my house with four bags of groceries from her local health food store. She bustled in and told me, “I showed the owner the list of foods she couldn’t have and he spent an hour with me walking through the store. Read all these labels anyway, though, before you give them to her.”

Snap. All through the fall of her kindergarten year, Sammi’s best friend’s mom sent clementines or bananas when it was her turn to provide snack, knowing that those were the only things Sammi could eat that I didn’t send. “I could eat the same snack as everyone today, Mommy!”

cakeSnap. In the middle of all of it, Sammi turned five, and my sister-in-law, fresh from classes in cake decorating, came over to help me decorate the only thing I could use for a cake: crispy rice treats. Carefully, slowly, we referenced a photo of the backdrop on Sammi’s favorite tv show.

One of the strongest memories I have of that time, though, was the deep, deep compassion bestowed on us by an employee of the candy company Jelly Belly. As a special treat for our kids, their great-aunt had offered to take them on a tour of the Jelly Belly factory about an hour away from home. As luck would have it, Jelly Belly jellybeans are free of all the top eight allergens. I confirmed this on the phone before they left.

They had a wonderful time at Jelly Belly headquarters and came home with souvenirs and, unsurprisingly, mountains of jellybeans. It was a moment of normalcy in a totally abnormal summer. And then, I read the side of one of the bags of candy they’d eaten on the tour:

Produced on shared equipment with peanuts

I cannot overstate the panic I felt. Even though Sammi would not get sick from this, it meant that the previous four weeks of crazy diet had been in vain. This excursion fell nearly at the end of the first six-weeks of the diet, after which Sammi would have an endscopy and then be given permission to take a short break from restriction to go on a family trip we’d been planning for years. This cross-contamination debacle would force us to cancel that trip and start the six weeks of diet from zero.

I went into a tailspin, grasping at anything I could imagine. I called the Jelly Belly factory again, horrified and furious and devastated all at once. What happened after that is best described in this excerpt from the letter I sent to the Vice President of Marketing for Jelly Belly.

“…I made a frantic call to Jelly Belly to see if perhaps the bags had been mislabeled. Kit McCoy called me back right away and immediately set to work checking lot numbers, re-checking with the production facilities, and calling me several times that day to update me on her progress. While she did that, I steeled myself for the possibility that, because we may have contaminated my daughter’s system with peanuts, we would have to postpone her endoscopy and cancel a family vacation we had been planning for over a year. Our window of opportunity for making this decision was very narrow.

Imagine my relief when Kit contacted me that very day to give me the news that the bags of Jelly Bellies that my daughter had eaten were simply “old film” – the beans inside were produced without any offending allergens. Kit’s quick research saved us an additional month of restricted diet, the loss of our long-planned vacation, and tremendous heartache. She deserves your praise and any commendation you can give her!

I am sharing our story with allergy support groups, friends, and medical staff to praise your company’s consumer relations and commitment to quality and safety. We are so grateful. We will be eating Jelly Bellies – and insisting that family carefully read labels – forever!”

 

I don’t know anything about Kit McCoy. I don’t know if she understands what she did for us. I’ll say this: without Kit McCoy, and her compassion, we would have lost this moment, on our vacation three weeks later: cruise

And more than that, I would have lost time, faith, and so much energy on recreating what we’d done all over again. Kit McCoy, wherever you are: you gave us time. You gave us space. You gave us hope.

Thank you.

1000voices

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Summer Lunch, “Free”

For many mothers of school-aged children, suddenly having to create on-demand, in-the-moment lunches during the summer is a rude awakening after the school year’s relative ease in school-supplied lunch or the mindless morning drop of sandwich/chips/apple/cookie into the lunchbox. Because of the economic diversity of my town, I know that the added complication of having to stop a day in the middle to prepare a meal still pales in complexity to the added stress of not having anything with which to prepare that meal. Some 60% or more of the children in our neighborhood elementary school qualify for free or reduced-price school lunch. When the summer arrives, all of those parents lose a third of their child’s weekday allotment of sustenance.

I am extra aware of the heartbreak of this situation after the summer of my daughter Sammi’s diagnosis of eosinophilic esophagitis. To calm the raging white blood cells in her esophagus, a progressive elimination diet had been prescribed for her. From her already vegetarian diet, we had to remove dairy, soy, egg, nuts, and wheat, and any foods prepared on surfaces that touched those forbidden items. In early July of 2010, I pushed carts through the Whole Foods grocery store, then the local multi-ethnic grocery store, then a smaller health-food store, attempting to put together a palatable and nutritious set of meals for her and us, who would be journeying through it with her so she wouldn’t feel alone.

Here’s how it went: I picked up an item — say, a cracker, labeled “gluten free” and “vegan,” which covered the dairy, egg, and wheat portions of the restrictions. Scanning the ingredient list, I searched for the presence of nuts, quite a common replacement for wheat in many gluten-free products. Finding none, I read even more carefully for soy; since Sammi only had to avoid the protein and not the oil or starch, she could still eat a food that contained soy lecithin or soybean oil. In the first weeks, I would allow myself to get excited if my reading had lasted this long without finding an offender, only to be crushed when, at the end of the ingredient list, I found the poisonous statement that made me shove the box angrily back on the shelf: this product is produced on shared equipment with products containing dairy.

Or nuts.

Or egg.

The first week’s grocery excursions cost us over $400, which bought us such strange things as wide variety of gluten-free flours (chickpea, tapioca, brown rice), hemp milk, rice pasta, coconut yogurt. To their odd and unfamiliar ranks I discovered I could add some common, cheap, everyday items that fit our needs and, when I did, I nearly wept with joy despite their chemical makeup being nothing like our previous diet. Post Fruity Pebbles! Betty Crocker Fruit Snacks! Lays Stax Potato Chips! Even so, the price of the diet was staggering, both in direct cost for ingredients and in the time it me took to shop and cook.

One morning about a week into this overwhelming experiment, I found myself near tears trying to imagine a lunch that would be appetizing for my daughters and a child who ate with us three times a week while her mother was busy. Carefully, I spread sunflower seed butter on thin, dense slices of a strange brown bread that had met our criteria. I added fruit in the shape of a face. I spread potato chips — also fancy and unusual — around the edges.lunch

It was the best I could do. My children, having sat through the difficult conversations and understanding the expectations and the experimentation we’d all have to endure over the coming months, gamely picked up their lunch and gave it an exploratory nibble.

The visiting friend, however, was not nearly so accommodating. “Oh,” she said, looking at the plate with a sneer. “My mom should have told you. I only eat white bread.”

I wish I could write here that I was understanding. I wish I could write that I brought her into the kitchen and made her a PB&J on white bread. Unfortunately, there was no food in my kitchen that wasn’t safe for Sammi. I had spent an hour scheming and hoping to build that strange little plate. I lost my temper with that child, telling her she could eat it or go hungry, leaving my children to manage her disappointment and confusion. I walked out of the room, locked myself in the bathoom, and pressed my head into the tiled wall, panting with anger.

Now, years later, I regret my behavior largely because I realize one of the reasons that parent may have left her with us for the day was that she may have been one of those children left without school lunch — and as a result, perhaps without any lunch — in the summer. I think about our astronomical grocery bills during that phase of the diet and wonder what would happen to the children like her if they’d had Sammi’s diagnosis. What on earth would a parent on a limited income do with orders like the ones we were following? I shudder to think of it.

Sammi’s lunch was dairy-free, egg-free, nut-free, soy-free, and wheat-free, but it sure wasn’t cost-free.

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