I was watching tv with my family over dinner on Martin Luther King, Jr. Day last week when the phone rang. The caller ID told me that it was the children’s hospital where my daughter spent years being treated for issues stemming from a congenital heart defect (even though not all of her doctors realized it). We’d not had a call from that hospital in over a year.
“Hello, is this the parent of Samara Lewis?” someone asked.
I walked several rooms away from my family and answered, “Yes, who is this?”
“Thank you ma’am, this is the gastroenterology practice at [hospital name]. We’re just calling to discuss the socioeconomic impact of Samara’s treatment for eosinophilic esophagitis. Do you have time for a quick survey?”
I paused. I paused for so long that the woman asked if I was still there. I paused long enough to talk myself through the waves of anger, heartache, and indignance that crashed over me as I pondered the audacity of that question. I paused long enough to think about how I’d like to answer that question. Continue Reading…
Most of my adult life has been propelled, in one way or another, by compassion.
As someone who began making a career in internet technology during the dot-com boom, I was always uneasy with what on earth I was doing by pushing pixels across a screen for a living. Who did I help, making web sites to prop up the egos of CEOs and corporate shareholders? It took me years to press my way into service to something with more value to humanity. By 1999, I was using the pixel-pushing skills I’d learned to support the voices of non-profit organizations. Necessarily, the budgets and the ability to innovate came later to these organizations. I could not charge them money they did not have; it was not greed that motivated their protest. My prices as a freelancer changed to reflect this. I adjusted and leaned toward compassion.
Then, when my children were born in the early 2000s, my entire life became an exercise in compassionate listening. A baby cried, unable to manage her emotions or get her needs met in any other way, and I held her. I sang to her, I soothed her. It seemed unconscionable to behave any other way. Another baby was born, this time sick and in pain, and she cried even more and for far longer than the first one had. My compassion was called upon constantly, to weigh my own needs against hers and to ask myself whether she had any other means of expressing her misery, any reserves of patience or space in her brain to make the developmental leaps a child with a full stomach and no pain can make. She did not, much of the time, and I needed to dig deep to find my own untapped wells of compassion. She needed every drop I had. Continue Reading…
When my daughter Sammi was five, Halloween could have been just horrible.
Just a few months earlier, Sammi had been diagnosed with a disease called eosinophilic esophagitis. An inflammatory condition of the esophagus — the tube that runs between the mouth and the stomach — it is poorly understood and responds to only a handful of imperfect treatments. The treatment we chose for her was called the Six Food Elimination Diet, a set of food restrictions that required her to avoid anything with dairy, soy, eggs, nuts, fish, or wheat. We were already vegetarians; this was a huge lifestyle change for our entire family.
Sammi had just started kindergarten, learning to read and write and follow instructions in a classroom that necessarily had been forced to eliminate Play-Doh (wheat) and to keep a small box with “Sammi-safe” snacks available for the days — most days — when she could not eat the shared snacks brought by her classmates. It was a rough start. And then, it was Halloween.
On this particular diet, the only kind of typical Halloween candy she could eat were Smarties and Dum-Dums. All other candies contained a forbidden item or were produced on equipment that might be shared with a forbidden item, and so I tried to figure out how to save Halloween. How would it be to walk from house to house and say, over and over again, “No, you can’t eat that one. No, you can’t eat that one either. No, no, no”?
Finally, I decided to solve our problem with a combination of money and magic. Continue Reading…
I hear my daughter Sammi’s steps on the stairs before her voice calls out to me. Still, I don’t run to unlock the door; she has keys, and my hands are covered in a sticky mass of egg and flakes of matzo meal. When I hear the key turn in the lock, I know what I’ll hear next and, still, it thrills me every time.
“Mommy!,” is the beginning and then, barely as that first word ends, the deep inhale begins, followed by, “Oooohhh! Really?!! Matzo ball soup!!! YES!!!”
This is my legacy, every bit of it, from the key in the door to the recognition of home to the smell of what’s cooking and what it means. This is how I want to be remembered.
Sammi has always loved soup. As a toddler, struggling to gain weight after her first cardiac surgery, she deigned to take tiny sips of a soup whose recipe I’d found in an old magazine and adapted. Chickpea soup became our savior, keeping her weight from dropping to the magically low number that would mean feeding tube. We spiked it with extra virgin coconut oil and kept a batch in the fridge at all times. It got so that I could not eat it myself, but never mind that — Sammi ate and did not wither, sipped and did not die.
When Sammi was only two, I brought a batch of that soup — a recipe I could make in my sleep and, half-crazed with insomnia in those years, often nearly did — to the home of parents who had just accepted two little boys as foster children. Sammi sat in her car seat as I hoisted the pot up the stairs and handed it over. There was, of course, another pot at home for her. These days, when I run into that other mother, she often mentions that soup, usually with the two words we use: “I made The Soup. Your soup. You know? The Soup.”