Our life is a Magic Mountain. I realized this the day I was in the California theme park’s Gotham City, strapped to a giant wheel — THE GRINDER — revolving at atomic, perpendicular, and paralyzing speeds. My then 13-year-old son, Vincent, was enjoying the ride, while I kept my eyes shut. “Are you okay, Mom?” he yelled into space. All I could answer — after we had stopped spinning — was that I had been thinking about fainting. “Don’t worry, Mom,” Vincent told me. “If you had passed out, the centrifugal force would have kept you standing.” This is the same force that operates in our home.
My husband, Walt, and I have five children. Life is a white-knuckled revolution around conflicting events, sudden trips to the doctor, lost homework, disappearing shoes, report cards signed at red lights, and backseat fights. I know of other mothers whose children never arrive anywhere short of breath, whose sons wear the same brand of shoe on each foot, whose daughters have real parts in their hair. Some might say I have a good excuse for the dizzied orbit of our life, but I know better. It has always been this way — even before everything got harder nine years ago.
Nine years ago, our perfectly healthy son, Vincent, started limping. The limp persisted, confounding the finest doctors, white tunnels and bone scans. Vincent was diagnosed with Fibrodysplasia Ossificans Progressiva, FOP for short, a rare genetic disorder that turns muscle and connective tissues into bone, building a second skeleton that completely immobilizes the body over time.
Nine years ago, Vincent played soccer and baseball like his brothers Brian and Lucas; today, he cannot raise his arms high enough to comb his hair; he is unable to bend down low enough to tie his shoes. FOP is a monumental force that harrows the muscles at random with painful tumor-like swellings that rise, shift and fall, leaving ridges of bone in their wake. And because even slight trauma can accelerate FOP’s progress, Vincent must no longer play organized sports. A minor fall can have the consequences of a car accident.
Vincent has raged against FOP, but he adjusts to its sudden shifts with a determination and grace that catch me by the throat. For four years, he strove mightily in his high school marching band, and in his first year of high school won the title of “Most Courageous” as his band, combined with five other Central California ensembles, won first place in a competition-parade in Hawaii. His courage is evident in an unusually generous spirit: Vincent is usually the one in the family who will patiently help friends with math or follow our youngest around a playground. Though sidelined, he has rooted or played trumpet in band at his brothers’ basketball games. And I have learned something vital, essential, in witnessing my son’s spirit, in following this spirit to the small footholds of grace that appear along the way to right us.
In this column I will be writing about those footholds: what I’ve learned about struggle, light, faith, good days and bad. I will be writing what I’ve learned from my brave son Vincent, but also from his older brother Brian, his younger brother, Lucas, and his little sisters, Celine and Isabel. I have learned more from my family, from the paths each member takes and crosses, than from the all the books I’ve read for a Ph.D. in Comparative Literature. And really, it’s all of us who follow the hidden path of FOP, though it is Vincent who lives with it in his bones with fortitude and grace.
Vincent’s FOP may be a catastrophe that strikes one in two million, but my son’s struggle, our struggle, is not especially different from anyone else’s efforts to stay standing despite the twists, turns, and breakneck falls that life can spring on us. Our family’s particulars may be unique, but — as the truism goes — struggle is universal. And I think that when we see someone like Vincent move gracefully with a great burden, we take heart.
I believe in a Divine Plan. I believe that part of this Plan is that my husband and I must guide our children through what I can only call “Magic Mountain,” a dizzying, exhilarating, white-knuckling life. It did not take me long to realize, the day I accompanied Vincent to the roller coaster park called Magic Mountain — on an eighth grade graduation trip — why I felt no more fatigue than at the end of our “normal” days. I knew why my eager son never once blanched or balked on the harrowing roll of the tracks. It was because it all felt hauntingly familiar. And surmountable.
The above essay is excerpted from Finding Magic Mountain: Life with Five Glorious Kids and a Rogue Gene Called FOP. This essay was first published in Rotary International’s The Rotarian Magazine in March 2002. Permission granted by Rotary International. A version was also published in Hispanic Link News Service in August 2001.