THE GLOW-IN-THE-DARK MARY

“When your kid has a disease and you’re an optimist at heart, you do everything you can humanly do for her…and sometimes you pray…”

Whenever I lost my daughter Caitlin in a crowd, I’d go still and prick up my ears. Within moments, it would come: her little throat-clearing cough. Caitlin was born with cystic fibrosis, a disease that predisposes lungs to chronic infections. Coughing was a lifelong symptom. When she was just figuring out how to use language, I’d hear her talking away to herself in her crib. “Always have to cough, don’t know why.” 

When your kid has a disease and you’re an optimist at heart, you do everything you can humanly do for her, you hope for the very best, and sometimes you pray, even though you’re not sure anyone is listening. I prayed that she would be able to live as easily as possible. Oftentimes she was. Other times we’d have to cancel the birthday party or––once again––the big trip to Paris and head into the hospital for weeks of IV antibiotics and therapy, treatments that helped keep infections under control.

We shared an interest in art and in the history of the world’s religions. “So what I always loved about Early Christian art,” she once wrote, “was that it was so . . . early. Years before even the crusades, the first really violent time in the name of Christ (well except for Christ himself obviously).” Always she had a special affinity for Mary, the great mother.

The year she was 21, we made it to Paris and did things we’d long dreamed of doing. We spent afternoons meandering the length of the city to visit the museums that she, an art history scholar, had been keen to see. One night we closed the Hemingway Bar at 4 a.m. with a bunch of ex-pats we befriended. But the time that stands apart is the day we took the train to Chartres to see the 13th-century cathedral and its famous labyrinth. The cathedral was originally a destination in honor of Mary, part of the pilgrimage to the Holy Land.

To walk a labyrinth’s path is to physically experience a metaphor for life’s journey. As we emerged from it, two women told us in passing that the view from the north bell tower was magnificent. Unfortunately, although walking on level ground was still doable for Caitlin, climbing a tower really wasn’t. 

She was wistful. “Too bad we can’t go up.”

I wanted to experience the clocher neuf and its view, but I didn’t want to abandon her.  

“But you can do it,” she said.

“Would you mind?”

The brave and generous way she said “Of course not!” cracked my heart. 

I entered the tower with its 300 spiral steps and began the steep climb, up and around, up and around, alone with my echo, higher, higher. Then, far below: another echo. Footsteps. And a little cough. I reached the top and looked out over fields of flowering yellow rapeseed, my heart full as I waited for her to join me and she did, finally, breathless and smiling and we hugged, and it was glorious atop that fairytale tower­­, up there with the birds and the wind in our hair and the rapeseed like a river of light, a moment of time suspended in a thousand years of history, where someone’s “1865” graffiti had transformed from a blight to a thing of beauty. 

She bought the little glow-in-the-dark Vierge Marie in the gift shop that day and always kept it on her bedside table. A decade later she would not survive a lung transplant, and Mary watches over my own nights now, a little bit of light in the dark.

—Maryanne O’Hara

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Maryanne O’Hara is the author of the memoir Little Matches: Finding LIght in the Dark and the novel Cascade. She lectures on topics including chronic illness, bereavement and secular spirituality.