Seventeen Years Ago, Plus or Minus a Day

door-349807_1280February 17, 1998. A Tuesday night. Or did it happen just after midnight, making it February 18? I don’t know. The medical records document every IV started, every vial of blood collected, every consent signed.

But they don’t document when I lost my daughter.

The process began Tuesday night. I know this because at 10 o’clock my daughter’s eyes fluttered open—an encouraging sign from her ICU bed as she awaited transfer to a trauma center for the euphemistic explanation of “a higher level of care.” But when my husband whispered, “Erin, you okay?” into her ear, she shook her head, and closed her eyes.

Is that when I lost her?

What went wrong? I asked the doctor on February 17. Nothing went wrong, he said. She’s too unstable. I didn’t do the lumbar puncture. One of her pupils has blown.

My daughter was careening towards brain death but nothing went wrong? Semantics, I suppose. Because when a 14-year-old girl walks into a hospital with a hacking cough and a nagging headache then leaves ventilated on a gurney in the back of an ambulance on the way to a trauma center, something most decidedly went wrong.

Maybe I lost her sometime during her medically-induced three-month-long coma. Eventually she opened her eyes, but in my mind that doesn’t count. By June she tracked objects, and by September she smiled. But those don’t count either.

Nothing counts, because nothing brings us back to February 16, 1998.

Hollywood, I’ve decided, is to blame, because I believed with all my heart—thanks to their wrapping-problems-up-in-an-hour world—that this could be fixed. That even when the situation crawled from days to months, one glorious morning Erin would sit up, rub her eyes, and ask what happened. We would be thrilled, but not surprised.

Along the way, though, something went wrong, and Erin didn’t follow the script.

In word math, “hospital” plus “loss” equals “death.” In Erin’s case there was not a physical death but a death of plans: plans of signed yearbooks and karaoke, of babysitting money and boyfriends. And that’s where her plans stop—or, rather, that’s where I stop them. Which means her plans never included driver’s ed or prom, children or a mortgage. They simply could not.

Here’s another word math equation: “trauma center” plus “medical experts” equals “cured.” In reality that equation needs one of those little equal-sign-with-the-line-through-it symbols, because there aren’t always cures. Or answers, or prognoses.

Most days I face forward, and see the people Erin helps: the students being taught by a teacher she inspired not to quit after his daughter was murdered by a former pupil—that teacher later nominated for Disney Teacher of the Year. Or the disabled people in Third World countries finally seated in wheelchairs of their own, no longer dragging themselves across dirt roads or relying on family members to carry them piggyback, thanks to Erin’s fundraising efforts for Free Wheelchair Mission.

Other days—days decreasing with the passage of time—I think back to that night seventeen years ago today when the doctor said that nothing went wrong. And I think how mistaken he was.

Because something indeed went very, very wrong.

Chrysalis

Courtesy CC/Flickr

Courtesy CC/Flickr

There was a girl I knew once. She was fourteen years old last time we saw each other. Her quick smile revealed lavender and pink rubber bands on her braces, I remember, and you got the impression she was like every other bubbly blonde on every other high school campus.

But this bubbly blonde was different.

This bubbly blonde had a 4.5 International Baccalaureate GPA and dreams of joining the space program, a fact illustrated by the dog-eared NASA application packet on her bedroom desk.

I knew her well. I knew the raised scar on her wrist was from a curling iron burn, and that she used too much hairspray on her bangs. I knew she was a rotten basketball player, and that she loved Mississippi mud cake. I knew her well, though perhaps not as well as I thought.

The last time I saw her was seventeen years ago, in a hospital. She was a patient there, I her visitor. You needed that scarred wrist to identify her; a ventilator hid the lavender and pink rubber bands, and her bangs fell flat. State-of-the-art medical equipment crammed her private ICU room, and she appeared small and inconsequential in comparison. Doctors shook their heads—either in disbelief or nonbelief, I’m not sure which—when they heard about her intellect, her plans.

Months later she emerged from a medically-induced coma, and people waited—waited for her to talk, or at least acknowledge a visitor’s presence. She did neither.

Over time she learned to use hand controls on her power wheelchair and an iPad for communication, because the devastating illness that stole almost a year of her life also stole her ability to walk and talk.

What, her friends and family wondered, will become of her?

Over still more time she returned to high school and graduated with her original class, near the top of her class. Later she was honored as Free Wheelchair Mission’s Ambassador of the Year after delivering sermons on their behalf, lifting hundreds of individuals off the ground “through the gift of mobility,” as Free Wheelchair’s tagline says.

How, you may wonder, does a nonverbal person deliver a sermon, anyway? The simple answer is, by typing with one finger and having the message read aloud. The complex answer is, with a lot of grit and grace.

Because drooling is a problem for someone with little motor control. So is being front and center when, I imagine, you’d rather sit in the back of the room. I said I didn’t know her as well as I thought, because the girl I knew would never have opened herself to public scrutiny, to curious looks, to outright stares.

The bubbly blonde is gone. Maybe she didn’t disappear in that hospital; I don’t know—maybe she just grew up. It happens. Her evaporated NASA dreams, I’m sure, disappoint her. But her earthly contributions now, today, impact more lives than if she’d traveled in space.

So why does a fourteen-year-old girl—a girl I haven’t seen in seventeen years—continue to haunt me? Because that girl was my daughter.

But so is the young woman that girl has become.