We Would Be Fine

The pediatrician came in for the routine check after my delivery — the normal one, the one that's supposed to be just a formality — and she looked at my daughter's eyes and said, "I think there might be something here. They look a little cloudy." And I thought, I don't know what eyes are supposed to look like. She's not even really opening them yet. So I didn't panic. Not at first.

Then we waited for the ophthalmologist.

That was twelve hours. Twelve hours in a shared recovery room — this was New York, eight hundred dollars a night for a private room, and there wasn't one available — and my roommate was on her third baby, totally calm, completely fine. My husband couldn't stay because there was another woman in the room, so he waited somewhere else. And I was alone with her, crying in the dark, slowly convincing myself that something was actually wrong.

When you look at the photos from those first hours, you can't see her pupils. All you see is blue. Wall to wall. And I couldn't stop staring at her trying to understand what I was looking at.

The ophthalmologist finally came. She said she thought it looked like glaucoma, but that we needed a specialist to confirm. Then we waited another twelve hours for her.

By the time the specialist walked in, I was at peak meltdown. I had called my dad and told him to fly up from Florida. He was there within six hours — because he's that kind of person, and because I needed him. The specialist looked at my daughter and said: "She has glaucoma." And I said: "What does that mean for her vision? Is she blind?"

She told me her vision would probably be around 20/200. That she probably wouldn't be able to see the chalkboard from the front row of class.

I didn't know what 20/200 meant. I didn't know what any of it meant. And the way she said it — flat, clinical, delivered like a verdict — I heard: "Your daughter cannot see your face. She cannot read a book. She cannot ride a bike."

I was furious. Not because of the diagnosis. Because of the lack of bedside manner. If someone had said to me, "She may need some extra support, but kids adapt incredibly well, and here's what we're going to do" — I would have been okay. But the way she said it, I thought my newborn's life was over. As I was holding her in my arms, not even 24 hours after delivering her.

She did do one thing right. When I asked her, "If this were your daughter, who would you go to?" — she didn't hesitate. She said Dr. Freedman, Duke Eye Center, North Carolina. The best in the world.

The specialist with no bedside manner got us an appointment a week out in North Carolina to meet Dr. Freedman — who turned out to be an angel sent from above. For my daughter, and for me, the mother, too.

We checked out of the NY hospital where I delivered, spent one night at home, and then we caravaned to North Carolina. Both sets of grandparents, everyone.

By the time we got there, I was five days postpartum. Spending the first week of my baby's life on an extended family road trip wasn't what I had in mind.

In the car, before we arrived at the hotel, my mom said something — I don't even remember exactly what, something about the hotel price — and I lost it. I screamed at the top of my lungs. I called her a name I won't repeat here. While I was holding my baby.

It was unhinged and I meant every word of it in the moment.

She was making it about her. In that particular way she does, when she can't hold herself together when things are hard, which means I end up holding her together on top of everything else.

I love my mother so much. She is a spectacular grandmother. But she has never been the person I can fall apart in front of. And in that parking lot, five days after giving birth, driving to a children's hospital with a baby who might be going blind — I needed my mother to hold me, assure me, and give me anything I needed to feel comforted and safe, and she wasn't there. So I screamed.

I didn't speak to her again for a month.

Dr. Freedman was everything the other doctor wasn't.

She looked at my daughter and she said: "Don't listen to anybody. I cannot tell you what she's going to see. She could be fine. It could be different. We don't know yet — so don't let anyone tell you otherwise."

That's all I needed to hear. I just needed someone to give me that hope.

Her eyes had filled with fluid that wasn't draining. The fluid stretched them, damaged her optic nerve, scarred her retina. She'd need tubes placed in her eyes — small drains that would live there permanently, cycling fluid out. She'd need surgery within the week. She was seven days old.

I handed her over in the hallway outside the operating room. The anesthesiologist was kind in a way that I still think about. Every person at Duke was. I handed her over and as soon as I let go, I felt this enormous weight lift — because we were no longer in limbo. Something was being done. Something was in motion.

Then we checked into our room for the night, because she was too young for outpatient, and we walked down the hallway of the children's ward.

I don't have the right words for what it's like to walk down a hallway like that. Children who are never going home. Parents whose situations make yours look like a footnote.

My husband and I looked at each other. "We're fine," we said.

That was it. That was enough.

She still has the tubes. She still does eye drops. She has stretch marks on her pupils from those first days when her eyes were so full of fluid they stretched before anyone knew. She sees the world through eyes that had to be rebuilt, piece by piece, surgery by surgery, over the first year of her life.

My husband — who I always describe as playful and a big kid at heart — was the adult, my rock through all of it. He would get up in the middle of the night to put her eye drops in when I couldn't bring myself to do it. He held himself together in front of me and had his own meltdowns in private. The morning she went into surgery, he did not let me see him fall apart.

I married right. I give him a 20/20.

Sitting here now, watching my daughter play happily with her friends, making dance videos and being silly — there are worse things in life than not being able to see the chalkboard from the front row of class.

My daughter can draw. A black marker is her favorite tool as an artist. She can write beautifully. She can ice skate. She can sing, and she can dance. And she is loved.