The Sandwich That Changed Everything

Debi Lewis Special Needs

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In the fall of 2014, my nine-year-old daughter ate a sandwich. I called over to a nearby friend and pointed it out.

“Look,” I whispered. “Look at what she’s doing.”

My friend’s attention swiveled to the sunny corridor where our daughters were sitting on plastic chairs, chatting away. In her right hand, my daughter casually held a folded-over piece of bread with cream cheese and strawberry jam spread in the middle. Technically, she held about one-third of it, the rest being either in her stomach or in her mouth, being chewed as the two girls talked.

My friend gawked and then whispered back, “Did she eat the rest of that?”

“I think so,” I answered.

She squeezed my hand and put her arm around my shoulders as we watched. She understood.

In truth, everyone who knew my younger daughter knew what this sandwich – and the way she was eating it – meant to me. For years, we had been trying to solve the mystery of my daughter’s strange eating habits. Though there were real medical issues at play – we had held her in recovery rooms after cardiac surgery and countless endoscopies, and had been doling out prescription medication every morning for years – no doctor fully understood why she ate so strangely and slowly. Speculation about everything from severe acid reflux to food allergies to behavioral issues had made no difference – if the food was not soft, wet, cold, or some combination of those characteristics, our daughter seemed unable to eat it. Even the foods she loved took her ages to finish. Frankly, eating was little more than work for her, and so it became the central mission of my life to feed her.

This had complex repercussions. If I woke my daughter up two hours before school, that might ensure that she had time enough to eat one-half cup of cereal with three-fourths cup of milk, but the doctors wanted her to drink twelve ounces of a protein drink as well, and there simply wasn’t enough time for both. I put the protein drink in a thermos and sent it with her to school. It usually came home only half-finished, along with most of the lunch I had meticulously packed (one-half of a whole wheat tortilla with refried black beans and cheese in it, a small container of berries, and three mint Oreos).

This meant that on most days, my daughter lasted from waking each morning until roughly four in the afternoon on the calories from a small bowl of cereal and a few bites of her tortilla wrap. She arrived home too tired and irritable to manage her emotions, and so it was no surprise that homework and snacking were incompatible. She did neither well; both came with tears. Four o’clock turned into five, and then, it was time for dinner – just as she had finally finished most of her lunch.

If dinner began at the hour that other families began their dinners, it necessarily ended at bedtime. My preparations of food that could be both nutritionally dense and palatable to her and the rest of us took up so much space in my brain that I dreamed in food labels. She wasn’t exactly picky – among her favorite foods were things like lentils, avocados, spicy pickles, cubed tofu, and egg salad – but desperate as I was to imbue each meal with both love and calories, I spun wildly between tried-and-true recipes and experiments that I hoped would pass muster. The rest of us ate at a normal pace, but my husband and I would stop occasionally to remind our little daughter of the bite of food hovering in the air on her fork as she chatted.

“Put that bite in your mouth, sweetie,” I’d say, clenching my fists under the table.

She would oblige, chewing the bite of squash or chickpeas for so long I’d debate telling her to swallow it! And so it went, day after day, night after night, for years as we chased down doctors and medications looking for the answers.

As parents, one of the more primal responsibilities we have is to feed our children. To be seen as deficient in that arena, or to feel helpless to do so effectively, is to call into question our basic success in caring for them. I knew during all those years that something was wrong with my daughter that kept this from being possible – that it wasn’t my fault or hers, that we needed to keep trying to find a solution. I knew that many of her other challenges – a short temper, a lack of endurance for activities which required concentration, her short stature and thin hair – came necessarily from uneven nutrition. Even as other parents praised her for liking fruit more than anything else, I knew that she needed more protein and fat than she was getting. I simply could not focus the medical lens on the right part of this picture.

This was our life for nine years, and then one day, we traced the problem back to her first cardiac repair. A whirlwind of tests, consultations, and appointments later, and she was scheduled for another major surgery – this time, to unwind the vascular tangle in her chest that was, against all odds, compressing her esophagus, trapping all but the smoothest of food inside it for hours at a time.  Six months after that surgery, I took her out for dinner and watched, shocked, as she cleaned her plate of the adult portion of pad woon sen at a Thai restaurant in under 30 minutes.

Two weeks later, I held my friend’s hand on my shoulder as we watched my daughter distractedly nibble at her sandwich until it was gone.  As it disappeared, I felt the years of begging, nagging, and pleading slip into the past.

It was just a sandwich. It was just a conversation. It was the beginning of a normal life.


About the Author

Debi Lewis

Debi Lewis is currently at work on a memoir about her family's experience through Sammi's journey through medical adversity. You can read her blog at .

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