It was a warm October evening in the Valley, and we were watching our red and blue high school marching band line up on the edge of the field, waiting patiently for the football players to jog away and the cheerleaders to hop off their stands. The digital billboard marked halftime, the flag girls finally advanced, and we heard the vigorous drums, the white tuba, and the endearing flat notes from the brass. Vincent was a junior, and he looked intense on his trumpet, concentrating on choreography. Lucas was a freshman in his first field show. He had most of his attention on the saxophone he had just learned to play.
Some of the teenage boys parading along the bleachers called out to our younger son, Lucas Whelan! Lucas Whelan! The salutation was some good-natured ribbing, partly because Lucas didn’t exactly know how to play the saxophone, partly because he is such a gregarious soul, but mainly because in the hierarchies of high school, the “cool” people are not usually in band. But Lucas, a natural athlete, joined band to join Vincent, who gave up sports after he was diagnosed with a rare genetic condition, fibrodysplasia ossificans progressiva, FOP, which turns muscle to bone.
When the field show came to a close and after the musicians made it back to the bleachers, a group of boys went up to Lucas with sly smiles and took him away in a teenage-boy pack to look for food. Vincent went off on his own to the snack bar after and my husband, Walt, and I, with our young daughters, Celine and Isabel, congratulated him on the music.
My heart ached at that moment for my second son because he looked–to my worried mother’s eyes–a little lonely. And I wished right there that Vincent might be more outgoing, as outgoing as Lucas, as gregarious as Brian. This wistfulness lifted a bit when I ran into other mothers who asked how Brian — in his element at a teeming university — liked school. But as we said our good-byes, I thought of Vincent standing in line alone.
I knew that our son has the best of friends (like the brilliant blond Peter). But at that very moment I wanted him surrounded — exactly like his brothers — his reserve dispelled, his genetic condition dismissed in the fraternities of youth. His solitude that night reminded me that my beloved boy had been singled out with a catastrophically disabling condition so rare it hits one in two million.
As I made my way along the perimeter of the football field, holding my two girls’ hands, I noticed Vincent’s trigonometry teacher, a beautiful woman with gold Pre-Raphaelite hair, standing at the edge of the field.
I was meant to see her at that moment.
“Did Vincent tell you what happened the other day in class?” she asked.
He had not.
“It’s amazing how he works things out in his head,” she went on. I agreed: Vincent has always been gifted in math (he doesn’t get that from his mother). The teacher explained: “I was writing a problem on the board, going through a good deal of calculation, and Vincent raised his hand and said, ‘Ms. Franklin, do we have to take all those steps?'”
Ms. Franklin asked Vincent if he knew a faster way to finish the proof because she sure didn’t. He did; he had already worked through the long problem without using a pencil, and explained it in three steps. When he was done speaking, one of the students in the room began to clap, and the entire class broke into applause.
I had tears in my eyes from Ms. Franklin’s story, and have never left a football field so elated. I realized that we often fret more than we should about our children, and that our dreams for them are sometimes irrelevant. I realized that God sends our kids to the world equipped with the exact talents they need in this life, and that all we have to do is love them.
For my beloved Walt, who as Vincent says, “Gave me my love of music,” and for my dear father, Daniel Zapata, lover of Spanish.
The above is excerpted with permission from Avalon Publishing Group from the memoir Finding Magic Mountain: Life with Five Glorious Kids and a Rogue Gene Called FOP.
For more information about FOP, kindly visit www.IFOPA.org.