MY DAUGHTER’S HEROIC BATTLE
FIFTEEN years ago this week, my beautiful daughter Veronica entered the world. She didn’t make a sound. As I stretched out my arms to hold her in the delivery room, furrowbrowed doctors and nurses, instead, whisked her away. I shouted after them in panic: ‘‘ Is she all right? Is she going to be OK?!” Slightly underweight and jaundiced, she remained in the hospital for several days before we got the allclear. My husband and I counted our blessings. But it wouldn’t be the last time we felt the pangs of parental helplessness when it came to her health.
Here’s the good news: In the blink of an eye, our shy, clingy little girl blossomed into a wry, wisecracking and independent young lady. She loves fishing, hates shallow people, solves a Rubik’s Cube in 35 seconds, prefers truecrime novels to “Twilight” schlock and recently developed a thing for icehockey players.
Veronica’s a wicked Photoshopper, a talented drawer, a makeup artist and ( unlike mom) a math whiz.
But just before Mother’s Day, she started having what appeared to be respiratory trouble. She “couldn’t get a good breath” and began gently gasping and sighing for air every few minutes. Two trips to the ER later, she’d been given ibuprofen for “costochondritis” and albuterol to open up her airways.
The problem is that all the various tests and exams indicate she’s getting plenty of oxygen. Her lungs, heart and vocal cords are all “normal,” yet she describes a chronic feeling she’s “drowning.” Every day begins with gasping beyond her control, multiple times a minute, nonstop, every hour of every day, until she reaches a point of exhaustion at 1 or 2 in the morning. After a brief respite while sleeping, the daymare starts all over again.
Despite taking an alphabet soup of potent neuro-related meds for tics and Tourette’s, Veronica’s condition has steadily deteriorated. The force and frequency of the gasping keep her in bed most of the day. She’s choked on food and drink several times; aspiration is a constant risk.
It’s been agonizing to watch her suffer while waiting weeks and months on end to see an increasingly short supply of specialists. It’s more agonizing knowing that, despite obtaining the best care possible for her, we still don’t really know what’s going on.
I’m overwhelmed at the strength and grace that my fierce firstborn child has shown. My husband and I named her after St. Veronica, a woman who displayed great courage in the face of adversity when she stepped forward from a jeering mob to comfort Jesus on the road to Calvary.
Over the past month and a half, our teenage daughter has shown more resilience worthy of her namesake than I have witnessed in most adults. She’s my hero.
Through it all, Veronica hasn’t cried or raged or lost her will. Not once. I confess that I can’t say the same, though I put on a good game face. With every labored breath she takes, every minute, every hour of the day, the same waking, aching thoughts echo without relief or resolution: ‘‘ Is she all right? Is she going to be OK?!”
‘ Through it all, Veronica hasn’t cried or raged or lost her will.’