Excerpts from Spelling Love with an X

From Chapter One

Anticipation: Once Upon a Time

Like the process of genetic mutation, the beginning of my story is hard to pinpoint. Does it begin one winter afternoon in 1993 when my seven-year-old son’s pediatrician called me with the results of a blood test for fragile X syndrome? Does it begin in the earliest stirrings of anxiety when my firstborn still wasn’t crawling at eleven months? Does it begin when the pediatrician examined our seven-month-old son and said, “There’s something not quite right here”? Does it begin when my egg merged with his father’s sperm in November 1985? Does it begin when my father’s sperm merged with my mother’s egg more than fifty years ago? Or does the story begin in a place and time untracked by human imagination, evoked by one scientist as “a slippage in the primordial chromosome”?

Knowing the point of origin is a basic human urge. “Once upon a time” is not enough for us after the childish years. I want to tell you precisely how I came to this day, how my son came to this day. But the journey begins at a microscopic level that defies coherent narrative. We have images for it, and letters and numbers, but its essence is the garbling of a sequence, the antithesis of plot.

It took seven long years to find the right diagnosis for my son’s delayed development. By that time his father, Harry, and I had seen five of the leading pediatric neurologists in the Boston area, a city known for cutting-edge medical research. In the end J.P.’s diagnosis would be read in his blood, in the X factor that everyone had missed.

From Chapter Six

Transcription and Translation: Speaking of Love

One morning when he was ten years old, J.P. was eating breakfast and announced, “You’re a great cook, Mommy.” Since he was eating peach yogurt from a carton and store-bought muffins, this compliment was a stretch. A minute or two later, he stood up, juice glass in hand, and said, “This juice is delicious. It tastes like popcorn-marmalade.” He then came over and hugged me with a twinkle in his eye that usually means he’s been up to mischief. Suddenly, his meaning dawned. The night before, I had microwaved popcorn and put the uneaten portion in a bag that I left on top of the breadbox.

“Did you eat the popcorn in the bag?” I asked J.P.

“Yes,” he answered promptly. Evidently he had found the popcorn before I got up that morning, and, in his own indirect way, wanted to fess up to finishing it. Orange juice plus popcorn equals popcorn-marmalade. The metaphor is decoded.

Metaphor is J.P.’s forte. The moon is a cinnamon cookie, J.P. declared one crisp autumn night at age eight. The summer he attended a special school for children more severely affected by their disabilities than he is, he struggled with his self-image and seemed anguished that his parents thought he belonged there. The other kids, he wailed, were “diaper-wipes”! Recently, when I asked why he had put mayonnaise on his peanut butter sandwich, he answered happily, “See, it looks like snow!”

When assigned to write poems in elementary school, J.P. often came up with striking images that once earned him the chance to have his poem read at a school assembly. Asked to describe his concept of “wilderness” in terms of the five senses, J.P. began:

Wilderness feels like
a rainy day
soft as a mealworm
safe from cars.

Wilderness tastes like
apples and
cockroaches.

J.P. has a way of capturing the essence of people he knows with the names he devises for them, either compounds of his own invention or the names of characters from fairy tales, Disney, or TV. You could know something quite accurate about each of the female classmates he describes in this excerpt from his eighth-grade classroom journal. Asked to reflect on what distracts him in school, he dictated this to his teacher:

Sometimes I think about girlfriends too much. I think about their pigtails and their loveliness. I daydream about Heather, who looks like a mermaid, and Jessie, who looks like Snow White, Melissa, who looks like Tinker Bell, and Shannon who reminds me of her beautiness, and Liana who reminds me of Minnie Mouse, and Danielle who reminds me of Barbie. All these ladies make my mind run like the Titanic. I need to kick them out of my skull so I can slow down and learn.

J.P. makes lightning-fast associations and then acts on them. One night recently, J.P., a friend, and I go to J.P.’s favorite restaurant, Vinny T’s, where J.P. likes to devour a basket of focaccia and a bowl of roasted garlic in olive oil. The waitress introduces herself as Joan.

“Hi, Joan,” J.P. says, uncharacteristically looking right at her. “I’m your biggest fan.” She laughs and goes to get our drink orders. I find this odd, but then, I’m used to odd. Now J.P. puts his cloth napkin over his head and says to the two of us in a fake accent, “I’m from Frahnce.” This is just as puzzling.

Then Joan returns with the drinks, and J.P. says quickly, “Thanks, Joan of Arc.” My friend and I finally get it and burst out laughing. Poor Joan may still be trying to figure us out.