Category Archives: instinct

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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Bodies, Attended with Love

bodiesThis past weekend, I saw something exquisitely expressed, over and over, as though the universe was patiently explaining it to me in as many ways as it could. Here, it said to me, notice this. You don’t get it yet? Ok, notice this.

By the time I lay, exhausted and filled to the brim on Sunday evening, I had finally seen it. It was bodies, magnificent in every way, thrust at me all weekend, telling me the story of all the forms reverence can take. 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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The Worst Terrible Advice

papersThis is the best era yet for the acquisition of information. No matter the strangeness of your request, a search engine can turn up something. In the years between my medically complicated child’s birth and her diagnosis with a rare inflammatory disorder, the internet became a phenomenal resource for medical information. The first thing I did after being handed the name for the condition — eosinophilic esophagitis — was to plug it, syllable by syllable, into a search engine.

This is a dangerous endeavor. There are multiple copies of the clinical information: the diagnostic criteria, the available treatments, the symptoms — and then there are the support groups and forums. I knew from previous small forays into research of her first diagnosis, cardiac in nature, that the people posting on the bulletin boards are largely the ones in desperate need of something. They need either sympathetic ears, advice from those more experienced, or recommendations for next steps when the first treatments have failed. The success stories — those who have tried a treatment, succeeded, and gone on with their lives — are not well-represented on disease forums. They don’t need anything. They have moved on, the disease or the procedure well into their past. Holding this perspective is crucial for the newly-diagnosed. For the most part, only those troubled by the issue remain on those forums.

That left one final category of search engine results: the foundations and non-profits.

For nearly every rare disease, a family foundation or group of patient families or medical research team has formed a charity. Funding research for cancer is relatively easy compared to funding research for something that affects only a tiny portion of the general population. These foundations are, literally, saving lives through hard volunteer work, fundraising, and advocacy. It was through one of these non-profits that I had my only one-on-one interaction with a parent of a child with eosinophilic esophagitis.

It was completely terrifying.

After posting on a Facebook group for the families of children with this disease, a parent heavily involved in one such foundation offered, via private message, to talk with me on the phone. I was struggling greatly with meal planning and also unable to see what life would be like for us in the long term. I was thrilled to be able to speak with someone in real time.

I explained to her, when she called, that my daughter had oddly not exhibited any of the typical symptoms of this disease except for the reflux-like sounds. She wasn’t vomiting regularly — in fact, she had never vomited — and though she was very small, she was not disproportionately thin. She didn’t have any food allergies. She didn’t have eczema. Maybe, I suggested, she would be one of the 90% of children for whom the culprit was just one or two foods that, once removed from her diet, would put the disease into remission.

I can still remember exactly where I sat in my dining room, cookbooks and menus and lists spread around me, when this woman said to me, “I wouldn’t count on that.”

I was surprised. She went on, “That 90% statistic is really exaggerated. Most of the kids I see in working with this non-profit start out that way, but eventually it gets worse. They lose more and more foods as they get older. Eventually they all end up on the formula.”

The formula she was describing is an elemental amino-acid based drink that provides nutrition for patients who can eat only a limited number of foods, a formula which tastes so vile that many of them choose to have it pumped directly into their stomachs through a gastromy tube. She described her own daughter’s path from diagnosis to her current diet, which was composed exclusively of the formula and five other foods, only one of them a protein. She spoke about the extremity of the path in which her daughter had carefully and scientifically added each food over years, a process which included many foods which “failed” the tests when they made her daughter sick. “This is how it goes,” she said. “I just don’t want you to get excited. That’s what happens to these kids.”

I asked her how her family functioned in these circumstances. Holidays? Family dinners? Travel?

“I eat a sandwich over the kitchen sink most nights,” she said, “so she doesn’t have to smell it.”

As far as I knew in that moment, she was describing my future. I knew doctors didn’t always listen to patients. Who should I believe? The mother of a patient with the disease who was also a leader in a non-profit dedicated to research, or a doctor who saw hundreds of these children in his practice? When that call ended, I had to leave my mess of papers and notes and walk quickly a few blocks to retrieve my daughters from day camp. I was shaking. How many more months would my life — already drastically changed by this new diet the doctor prescribed, eliminating dairy, egg, soy, nuts, wheat, and fish from our already-vegetarian diet — be able to include a family dinner? How many more afternoons at the farmers’ market, eating cherries in the sun, were left for us?

Later, I would learn that the woman to whom I spoke had a daughter with a far more severe case of this disease than most and, as such, had sought support and company from others in a similar situation. I would find, as the years went by, that my instinct was, as usual, correct; my daughter would pass food trials and never need that formula. When the standard treatment protocol works, the patients don’t often feel driven to form and work for disease-specific foundations.

But that day, I didn’t know that. That day, she shook the hope out of me.

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Becoming Amazing

sammi chewing on my pantsWith the diagnosis and all the accompanying realizations about why the first year of Sammi’s life had been what it was came a less obvious change in my life as a mother:

I became amazing.

In the span of one bronchoscopy — the real thing, the right test that showed us that her airway was 70% constricted — I went from that crazy, unhinged, unreasonable mother at whom everyone shook their head to the heroine of my family. My stubborn insistence on nursing her past her first birthday became a gift all acknowledged as selfless and stroke of genius. My willingness to hold her when she cried, carry her in a sling against my chest, sing to her and not utterly fall to pieces at the news of her upcoming cardiac surgery — all of these were held up as Brilliant Motherhood Personified.

Just look at her. She’s an incredible mother.

I felt like grabbing everyone who said that by the shoulders and shaking them, not just then but for years to come, through all of the followups and complications and all of the diagnoses and procedures, and saying “WHAT. IS. MY. OTHER. CHOICE?” Truly, I have never understood this statement, kind-hearted and well-intentioned as it is. It’s a statement that claims there is something magical about a mother who does the right thing for her child; there is something truly special about a mother who listens to her instincts; there is something miraculous about a mother who puts her foot down and says “I will not stand for my child’s discomfort a moment longer.”

Truly, that mother is all around us:

She is saying “no” to homework for her sensitive eight-year-old.

She is walking away with her back turned from her kindergartener who is sobbing, knowing that her presence only makes him cry harder and that he’ll have a great day in his classroom once she’s gone.

She is pushing the pediatrician to look in her toddler’s ears just once more because she knows there’s an infection from the way his nose is running.

She is feeding her six year old the same chicken nuggets and carrot sticks every night because dinner is not the battle on which she wants to base their relationship.

And she is me, standing in a hospital room with four-month-old Sammi, who is screaming and screaming against my chest, IV under a splint in one arm, unable to nurse because her breathing is too fast. She is me, begging the nurse to do something, knowing this is not how Sammi cries, knowing that being held and sung to is always enough. She is me, shocked beyond words at the suggestion by that nurse that Sammi’s pained, hysterical wailing could be soothed by a Baby Einstein video, shocked and stunned that the nurse would shake her finger at me and tell me that I should know by now that babies cry sometimes and we don’t always know why.

She is me, four hours and a nursing shift change later, drenched in sweat and holding Sammi in the crook of my arm in a hospital bed, both of us deeply asleep after the new nurse discovered that Sammi’s IV had infiltrated the tissue of her arm, filling her skin with IV fluid from the tips of her fingers all the way to her armpit. With the IV removed, the screaming had stopped, and Sammi and I had collapsed, utterly exhausted, into that bed to sleep, pressed into each other for the rest of the night.

I was an amazing mother when I was preparing and getting Sammi through every surgery, but I was an amazing mother like all other amazing mothers every time I listened to that voice in me that told me something was wrong. That’s not amazing, really. That is what motherhood requires of us.

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