what my daughter’s disability taught me about human growth

In 2012, my wife Meredith was about to have our first child, Zoe. She woke me up at four o’clock in the morning and said, in one breath, “I’m pretty sure I’m in labor and we should go now!”

Her birth took 12 hours, and she emerged into the world a healthy and brilliant pink, all screams and wiggles. But even that felt strange.

Zoe needed surgery. At only five-days old, she was strapped down and wheeled into the O.R. to repair a ventricular septal defect or, in layman’s terms, a hole in her heart. 

We’d known this would be necessary since the pregnancy, so we had picked our hospital and surgeon, prepared rooms in Mer’s parents’ house for recovery, and downloaded dozens of the most distracting films Netflix and HBO had to offer.

This was the last time we would relax for years.

A few days later, they told us: Zoe had experienced a stroke during the procedure. Her surgery had been anything but routine. A group of doctors circled around Meredith and me. 

The stroke was triggered by a severe lack of oxygen to her brain, they said. 

“This is consistent with four minutes of deprivation,” one of them lectured, which is bad—very bad. 

We saw before-and-after CT scans of her five-day old brain, and I had to look away. Like pictures back home in Louisiana of wetlands eroding over centuries, her little brain was two-thirds the size of what it was only hours before. 

Zoe would never walk or talk, one of the doctors added. They said that she would not recognize us, that physical therapy would do little more than prevent constant physical pain. She would never move on her own. Perhaps someday she might be able to hold a ball, a thought offered as a comfort.

A question came out of me only because I was pretending not to be me right then, to be someone less involved in this, someone standing next to us who knew the questions to ask.

“Will she, you know, experience joy?”

The doctors exchanged glances.

“Not in the way you or I would,” one of them said.

Pictures from my future began evaporating. I had envisioned Zoe’s fingers—holding my hand as a ponytailed toddler while we walked a bridge across the bayou two blocks from our house. 

While I stood with Mer and those doctors, her fingers, her whole body, those daydreams all became mist, whipping around and curling through my fingers up into the air. Gone.

I had essentially been told that I had died. My life till then had ended. The future had been snuffed out. Mer and I tried to make a family, and it had ended us.

“What are the chances you’re wrong?” Mer murmured. “What are the chances she makes a recovery?”

How do you deliver the worst news of a person’s life?

Zoe has a zero percent chance of development, the doctor confessed.

“I’m sorry,” he said and left us there, numb.

As I write this, eleven years have passed since that time. Six years have passed since that gaggle of doctors foretold the end of Zoe’s life. 

Now I wake up every day to a little girl who walks and talks, who loves life and people, who shoots a basketball, and chucks her mac and cheese at me with glee, insisting that it tastes better in a sandwich. And every time I throw a cheese soaked tee-shirt into the washer, or shag an errant basketball out of the flower bed, or teach Zoe a new thing, the words of all those doctors echo in my ears—“she’ll never walk,” “zero percent chance of recovery,” “she won’t recognize you,” “I’m sorry.” 

And in that same moment, I will often let out a long breath and say to myself, with even more passion than I could have imagined before, “I can’t wait to watch her grow.”

My firsthand experience with Zoe taught me a lot about the way we look at growth as a society. Watching her live a life that doctors said was impossible has given me faith in a different kind of approach than is typically taken.

It led me to believe in a new Growth Cycle, one where we can learn to look at the tragedy that is the loss of human potential not just with hope and action, but with confidence.

-Ben