In case you were wondering, being the parent of a 2-year-old child who can't walk, needs oxygen and has a feeding tube protruding from her belly is a strange experience. It certainly wasn't a part of our master plan.
However, due to a freak accident, our daughter was born 14 weeks early, weighing just over 1 pound.
We had to wait a long time before we could introduce her to the world — six months in the neonatal intensive care unit, then a year sequestered at home. Finally, when we made that triumphant walk down Larchmont Boulevard in Los Angeles, so proud that we had made it through the first part of our journey, we were surprised by what we experienced.
Don't get me wrong: I believe everyone involved had good intentions, and I realize that seeing a baby in this state must have been startling. I think people didn't know I could hear them whispering as we passed. I know that when they pointed her out to their friends, they didn't mean for me to see them — but I felt my cheeks burn every time.
Their concern and interest wasn't mean-spirited, but the feeling I had during those moments was close to humiliation. I remember every stare and whisper during a time when I really could have used a friendly smile or perfunctory exchange of pleasantries.
The relief I craved ultimately came from the most unexpected place — children. These were kids who approached us and started asking questions before their parents were able to pull them away. "What is that?" they would inquire, pointing to the oxygen tube in her nose. They were not afraid, just dying to know!
Every time, I would reply loudly enough for his or her parents to hear. "She was born too early and her lungs are still growing," I'd explain. "This tube is giving her extra air to help her breathe." Then I'd pause to see how they were managing that information. Invariably, they would head back to their parents satisfied with my answer, and I would feel a bit better for the brief connection. Often, once the parents saw that the situation was not as scary as they feared, they would smile at me and sometimes ask a question of their own.
All the time I wanted to tell them that very little separates us and that I was just like them not long ago. I always kept that to myself, though, because that is one thing I believe they already knew.
Carrie Heckman is a writer and mother of two living in Los Angeles. Her daughter is now a healthy second-grader.
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