When I was in grade school, I got hit in the face with a big rubber ball, the kind used in Dodge Ball. I didn’t see it coming. I didn’t even know there was a game going on. I had been talking to a friend about something and suddenly, for an instant, everything went black. All I could see was pain. I blinked a few times, looked around, and slowly figured out what happened. (Mostly by asking my friend, “What happened?!”) I wasn’t hurt too bad, but it was a disorienting experience. There was a moment when I felt completely disconnected from my life and my surroundings.

I remember this feeling when I think of the family care conference the hospital scheduled to discuss Alia’s prognosis with me. It took place in a small room off to the side of the intermediate intensive care unit (IICU). I can’t remember if Alia had graduated yet to the IICU or if she were still upstairs in the neonatal intensive care unit. I do remember that I was alone, surrounded by medical experts from various pediatric fields, and a social worker I had never seen before.

The meeting did not go well. In fact, it was horrific. Each expert, one after the other, weighed in on all of the things Alia probably wouldn’t be able to do. It was a long list. It started with the mortality rate of extremely premature babies like Alia. The most senior doctor had the most dire forecast but no one disagreed with him. I endured their litany of no’s and never’s as best I could as they each took turns obliterating the hopes and dreams I held for my daughter and for myself as her mother. Systematically and conclusively, they killed my future.

I don’t know why they thought it would be a good idea to kneecap her only caregiver. Maybe they wanted to make sure I understood just how serious our situation was and to test if I could manage the additional needs she would have. Who knows. At some point they stopped talking and everyone looked at the senior doctor, who then looked at me. “Do you have any questions?” he asked.

What could I say? They had taken away essential aspects of what I associated with family and motherhood and even happiness. Desperately I searched for a hint of hope in the devastated landscape. In a voice I didn’t recognize I heard myself ask, “Will she be able to smile?” Stripped of all else, I thought if she could smile we’d be okay. There was a long pause. “I hope so,” said the doctor.

For the millionth time in a very short time, I wanted to scream and keep screaming until I woke up and Alia was a happy, healthy little baby, sleeping by my side. I wanted to be anywhere except in this hospital. I didn’t want to listen to these doctors and I didn’t want to feel scared all the time. But I was trapped. This was my life; there was no escape. Alia was here and so I was here, standing on the scorched earth they had left for us.

“Could I have some time to think about this?” I asked. With visible relief, everyone filed out of the room. The social worker handed me a card with some phone numbers on it. I was stunned by their vision of our future, like when I was hit in the face with the ball. Except this time, when I blinked a few times to re-orient myself, there was no one to ask, “What happened?” I had to figure it out myself.

I had a hard time standing up, so I stayed seated for a while. Slowly but surely, like a flood, anger and then rage coursed through me. Who were these strangers to decide the fate of a little girl who wasn’t even (developmentally) one day old? Instinctively, I defended her. She will decide for herself what her life will be like. I resented these people I barely knew telling me what to believe about my daughter and our life together. That’s our story to write, not theirs.

I stayed there a long time, refusing to follow their lead but at a loss for how to move forward. How was I going to navigate our journey? Finally, thankfully, an idea came to mind like a breath of grace: Where she goes, I go.

That was all I needed. I had an inner compass now, and I used it to guide me throughout the weeks and months and even years ahead. Whatever she needed was the direction I would go to find it. It has been a rough road, and continues to challenge me today, but I believe in the human spirit. I believe in potential. And I defy anyone who thinks they know the limits of her—or anyone’s—abilities (including their own). We can all be extraordinary. There are just too many heroes in our everyday lives to deny it.

If you find yourself in the middle of a story you don’t like, please remember you are the only one who gets to write the narrative. We may not be able to change the events—Alia was born three months early; there’s no changing that—but we get to choose what they mean and how to move forward. If a tiny two-pound baby can be a hero, you can too.

Safe travels!