It is the small acts of kindness that I remember most and hold dearest: a single sentence, uttered perhaps without thinking; a simple act, committed by someone I would never see again. These passing moments of grace, probably long forgotten by those who offered them, were like lamps illuminating a darkened footpath during my son's short life. I had no idea where that path was headed, but I was grateful for the pools of light along the way.
Dining one December evening at a local restaurant, I noticed a distinguished, white-haired gentleman a few tables over glancing repeatedly in our direction. Luke, ten months old but unable to sit on his own, was squeezed into his bucket car seat with a thin, orange feeding tube looping from his nose. At first, I wondered if the man was staring at Luke, and bubbles of indignance gurgled in my chest. But Luke was facing away from the man, out of his line of sight. By the time the waiter placed our steaming entrees before us, I had surmised that the stranger was watching two-year-old Hannah, blonde and precocious, wearing her favorite blue ruffled dress and merrily trilling about her day.
Sure enough, after he paid his bill, the man wound through the crowded tables and stopped, tall and straight-backed, beside ours. "My dear, you are a charming young woman!" he said to Hannah, who positively pulsed with delight at the attention.
Then he turned and extended his hand to Luke—my dear son, laying limply in his car seat, bloated from seizure medication, blue eyes darting around the room like butterflies unable to alight.
"And what a handsome young man!" the stranger said without the slightest ripple in his gentility. Then he reached over, gently clasped Luke's clenched fist, and shook it—just one gentleman greeting another. For two, maybe three seconds that seemed to stretch into eternity, Luke's gaze paused on the stranger's face. Finally, the man turned to Josh and me. "You must be very proud," he said with a quick, no-nonsense nod. And then he was off, a Santa Claus in everyday clothes, bestowing a single glorious gift before sweeping out the revolving door into the cold night.
Thank you, kind stranger, for recognizing my son's humanity and reflecting it back to him, to us.
Around the same time, Luke was visiting a physical therapist each week. By then, we all knew that progress on just about any physical milestone was unlikely. When Luke was diagnosed, months earlier, Josh, in trying to puzzle out what the doctors were telling us, had asked outright, "Will he ever walk? Will he ever talk?"
"Anything is possible," the neurologist had answered. "But it would be a very steep climb."
What he should have said, I eventually learned, was simply, "No." Luke wasn't going to learn to walk or talk any more than he was going to learn to fly or breathe underwater. His body was not designed for those things. In trying to spare us one incisive emotional blow, the doctor's equivocating answer sentenced Josh and me—and worst of all, Luke—to a grueling climb up an insurmountable mountain, burning with failure and frustration over Luke's inevitable lack of progress.
The physical therapist had long since recognized this, so instead of pushing Luke to accomplish the impossible, she focused on his comfort, stimulating his muscles and stretching his hands, which were almost always clenched, white-knuckled, into fists.
One night, after his session, I was buckling Luke into his car seat in the waiting room when another little boy, hearing aids curled around both ears, pointed at the feeding tube snaking from Luke's nose.
"Why does he have that?" the boy asked his mom. There was no malice, no disgust, just curiosity.
"I think it helps him eat," the mother said, looking to me for confirmation. She wasn't embarrassed by the question. She didn't shush her son, or usher him out of our earshot, or lower her voice to answer. She touched one of his hearing aids lightly with her finger. "We all need a little help once in a while, you know?"
Thank you, brave mother, for not apologizing for my son, or yours.
I was standing in line at Starbucks one afternoon, when I found myself next to one of my university colleagues, famous in his field for brilliant scholarly achievement and famous among the staff for his painfully awkward demeanor. I had just returned to work, having spent the last few weeks of my maternity leave shuttling Luke to doctors and specialists, hospitals and clinics, begging someone to tell me what was wrong with my son. The result was that, in a colossal stroke of unfortunate timing, colleagues who hadn't seen me since I was round and swollen with pregnancy would ask, "How's the baby?" expecting a warm and cooing account of Luke's newbornhood, receiving his death sentence instead.
These terrible conversations usually concluded with the other party sputtering a horrified, "I'm so sorry," and me responding with an uncertain "thank you." I loathed that "thank you." It seemed a phrase better reserved for happy times, like birthday wishes and compliments on one's hair, not as some perverse felicitation offered in exchange for another's sorrow.
When the professor asked about the baby, his voice barely audible over the belching espresso machine, I was surprised, given his notorious aversion to small talk. And when I told him of Luke's fate (It was only later that I learned to deflect, to protect others and myself from these artless conversations), I braced myself for a clumsy response.
"That must be very hard for you," he said softly, eyes focused on the littered floor. And for once, I didn't cast about for a suitable reply.
"Yes, it is," I said quietly.
Thank you, professor, for seeing my pain and acknowledging it, and for allowing me the luxury of a true and appropriate response.
When my children were babies, I learned about "self-soothing." It was a bittersweet concept for a new mother accustomed to providing every essential—nourishment, safety, shelter—to the little being so recently housed within her. But I'd watch Hannah stroke her ear as she faded into sleep or Eve twirl her hair while concentrating on some puzzling task before her, and I'd be thankful they had a tool, always present and in their complete control, to settle their souls.
These memories of the small kindnesses of others have become my way of self-soothing. When the pain of losing Luke closes in, when the crush of life feels overwhelming, I reach back into my mind and unearth one of these scenes, like a child reaching for her teddy bear in the dark.
There were other, greater gifts too, extraordinary feats of caring and compassion. But these are harder for me to hold in my heart. They are not as easily taken out, examined, and neatly put away again. They are too immense, boundless, like trying to wrap my arms around the ocean. My husband cannot, will not, think about the last few days of our son's life; the pain overwhelms him. In some strangely similar way, I am overcome by human kindness. Profound gratitude, I have found, can be as emotionally intense as pain. Both can be an easy place in which to get lost.
So in this season of giving thanks, I focus on these simple gestures. They remind me of the grace that we have, that we can share with one another; that the darker the way, the brighter a single ray of light can be.