My daughter is the fairest of them all

“When I was her age,” says the woman, “I had hair just that colour.”

I smile politely at the woman and say something vague and inoffensive, such as “Really?” or “Wow” or, if I’m feeling generous, “It’s a great colour.” But I think to myself: No, you didn’t. Not like this.

I prepared for Nora’s birth as though I were studying to get into university. When my daughter arrived on a bright February morning an hour after I walked into the hospital, I felt like I’d won. Not only had I breezed through labour and delivery, but I had the best baby. All the nurses said so. She was blonde, blonde, blonde like you couldn’t believe.

“Everyone wants the blonde baby,” the nurse said as she wheeled my daughter. “Don’t you get blonde babies all the time?” I asked.

“Yes,” said the nurse. “But not like this. Not with the blonde eyelashes and the blonde eyebrows. We had another baby in here with hair like this a few months ago, but it was a boy. It’s a better colour for a girl.”

A picture of me taken the day after my daughter’s birth shows me crossing over from radiant to annoyingly ecstatic. I am calm, my hair falls into soft curls on the pillow, as though pushing another human out of my body was so effortless it barely required me to move my head. And I am beaming in a self-satisfied way at the new baby in my arms, confident that all will go according to plan.

But once we got home, something shifted. For the first few weeks of my daughter’s life, I had the nagging feeling that something wasn’t right. There had been a strange moment at the hospital the day before we’d been released, when the doctor had announced that my daughter was jaundiced and needed to go under the bilirubin lights. But when they put Nora into the box, she began to scream.

“That’s strange,” said the nurse. “They usually like it in there.” We watched my daughter arch her back and writhe. Eventually, too exhausted to scream, Nora fell asleep. Then, once we got home, her sleeping wasn’t quite right.

Babies don’t just lie in their cribs and quietly contemplate the ceiling, right? It was a little thing, the littlest of things, but I found myself coming back to it during early-morning feeding sessions. And then, six weeks later, came the night of the fever and we took her to hospital.

For the six weeks preceding that night I’d joyfully been a member of a perfectly formed family, and for even longer I’d been someone who saw the world in terms of perfection and imperfection. Twelve hours later, we were in the paediatrician’s office for a follow-up visit. The hospital staff had poked and prodded Nora all night; after multiple blood tests and spinal taps, they’d concluded it was just a virus.

Under the skin: Nora shortly before her first birthday in 2010. Her condition affects one in every 17,000 people (Courtesy of Hana Schank)

“Her fever’s down,” the doctor said, examining my newly awakened infant.

Nora opened her eyes, stretched and began to look around.

“Do you see that?” the doctor said, gesturing towards her eyes, which were now moving back and forth slowly as though she were scanning the room for a radar signal.

“Yes,” I said. “What is that?”

“I don’t know,” the doctor said, chuckling a little.

I let out a little laugh. Obviously, it was nothing to be concerned about. I’d noticed her eyes doing this before, two blue circles gliding from corner to corner. There was something otherworldly about the movement, but I hadn’t thought much of it.

“Do you think she can see?” asked the doctor.

He said it so casually, I had to replay the scene in my head almost instantaneously in order to process the words that had come out of his mouth.

“I don’t know, I guess I just assumed she could see,” I said. “I mean, I think she can see, yeah. I feel like when I put her on her activity mat, she looks at the toys and tries to hit them.”

“OK,” said the doctor. “Then she can probably see.”

I stared at him. That was it? That was his medical opinion? Mother says baby can see. No further tests needed.

“Does she make eye contact?” he asked.

I thought about it. “I don’t think so,” I said. “I guess I just assumed that it takes a while for their eyes to, you know, see stuff.”

A few days later, I got up the nerve to pull the paper out of the nappy bag. I unfolded it and read the single word on it, scrawled in pencil in messy doctor script: “nystagmus”. That was the word for the condition Nora didn’t have. Then I looked it up.

“Involuntary eye movement,” said the internet. And then, the three key points: the cause is unknown, it indicates visual impairment, and there is no cure. I closed my browser. Great, so there is no cause and there is no cure for a condition my baby does not have.

The next week, my husband and I returned with Nora to the paediatrician for her two-month check-up.

“So,” said the doctor. “I think I figured out what’s going on with Nora’s eyes.”

Mother and daughter (Courtesy of Hana Schank)

“Oh, great, what is it?” I asked casually, feeling that the more casual I could be in the asking, the more benign the response would be.

The paediatrician sat down and pulled his chair close to us. That was a bad sign. Good news rarely starts with the paediatrician sitting down.

“So, first, let me ask you some questions. Do you have a history of albinism in your family?”

“What?” I said. “Of course not.”

He might as well have asked me if I had relatives who were giant squid.

“Well,” said the doctor. “I was thinking about her nystagmus, and then I remembered that nystagmus can be associated with albinism, and she’s so blonde, it all made sense.”

I stared at the doctor, trying to parse the words that were now flying around my head in an indecipherable cloud. “So,” the doctor continued, as though there were no reason for him to pause after telling us our child was a genetic mutant. “You should have someone look at her eyes. I know a neuro-ophthalmologist who will be able to rule out any kind of neurological issue, and we can go from there.”

Two weeks after the paediatrician had introduced the word “albinism” to my vocabulary, my husband and I sat in the stuffy waiting room at the neurologist’s, gently rocking my d

aughter’s car seat. This was the man who would tell us what was going on with my perfect-imperfect daughter.

The neurologist was a man in late middle age, trailed by a flea cloud of students. I held on to Nora tightly as the neurologist did his best to clamp her eye open and peer into it. She squirmed in my lap and screamed, arching her back just the way she’d done in the bilirubin box the day after her birth.

“Well,” he said, addressing his students more than me. “In a normal eye there is a foveal pit, and it appears there is one here.”

“What does that mean?” my husband asked.

“I would say this is just a very blonde individual. I don’t see any other causes for the nystagmus, so it should just go away on its own in a few weeks.”

“You mean it’s nothing?” I asked.

“I would characterise it that way, yes.”

There was a sudden shuffling at the back of the room. One of the students had found an eye instrument sized for an infant. The neurologist decided to take a second look. I held Nora on my lap again; this time she put up less of a fight.

Fruits of labour: Nora usually wears a hat outside the house. Hana says: ‘Do I explain that my daughter isn’t choosing a hat for fashion, but because the glare from the sun makes it painful for her to be outside without a brim?’ (Courtesy of Hana Schank)

“Actually,” he said, drawing himself up and looking at his students, “this is an individual with albinism.”

“Wait, what?” I said.

“I was able to get a good look this time. There’s no foveal pit.”

“Does that mean she’ll be legally blind?” I asked.

“Most likely, yes,” he said.

I let out a sob.

Albinism is rare, with an incidence rate of one in 17,000. It’s an inherited genetic condition, so both parents must be carriers for the same type of albinism in order to have a child with the condition. People with albinism can suffer from a range of vision problems. They may lack depth perception, which means they might not see changes in variation on the pavement. Most people with albinism also suffer from photophobia, a word that always makes me think of people running screaming from daylight. It means sitting with your back towards the window in a restaurant, and it means screaming when they put you under the bilirubin lights.

If there is one truism about babies wearing sunglasses, it is this: the general public cannot stop themselves from pointing and commenting. So wherever we went, we heard, “Oh, there’s a baby with sunglasses,” and “Look at the baby with sunglasses,” and “Is she a baby movie star?”

While I now understood where Nora stood within the existing medical establishment, it was harder for others in my life to reach the same place.

“So how is she doing?” my friends would ask.

“Nora?” I’d say. “She’s great.”

“But how is she doing?”

I still get asked this today. It could be any friend, on any day. Or sometimes it’s a relative at a family gathering.

I know what this person wants. She wants me to tell her there is a new treatment on the horizon, or that Nora’s vision has miraculously improved overnight. But barring a medical breakthrough or a technological advance, Nora’s got the eyes she’s got.

In today’s world, that is a nearly impossible concept to grab hold of. Everything is fixable or improving. There is no problem medicine can’t solve, no course of treatment you can’t employ. How modern can our world be if a child born legally blind simply remains legally blind? It sounds archaic, like something from the Stone Age. Blindness. So last Tuesday.

“She’s doing really well,” I say. I might elaborate with some recent development: she’s reading, she’s doing really well in her maths class, she’s on a football team, she’s learning to ski. But this rarely leaves my friend satisfied.

At one with nature: Nora and her brother in 2014. He had also been born jaundiced, but does not suffer from the same condition as his sister (Courtesy of Hana Schank)

“Is her vision improving?” this person asks. “Is there something they can do?” When you’ve got a kid with a condition so rare, wherever you go, you’re conscious of it.

When Nora turned three, we began visiting nursery schools and filling out application forms. There were nurseries that wanted parents to participate a lot, by which they usually meant they wanted parents to scrub toilets and do the accounting; there were nurseries that everyone said we’d never get into; and there were those that felt a little neglectful. Every school said they’d take Nora and that they’d be happy to accommodate her, but they said it like they’d be willing to do it. I didn’t want a place that would be willing to take my brilliant, gorgeous daughter. I wanted a place that would be happy to have her.

From the minute we walked in the door at the school across the street, I could tell this was where Nora would attend. “We’ve never had a student with albinism,” the head told me, excitedly. This wasn’t a burden for her. This was an opportunity to learn about how to accommodate something new and different. Just tell me what we need to do, her smile said, and we will make it happen.

As much as I wanted Nora to go to a regular school and be with regular kids, so I could prove to myself just how regular she was, the truth was, she did need a little extra attention. She needed a teacher who wouldn’t get annoyed at her need to look closely at books being read aloud to the class, who would remember to grab her hat and sunglasses before they went out for recess, and who would be sure to put everything Nora needed to see at eye level.

The general consensus is this: if you’re going to have a genetic disorder, albinism is the one to get. Your intelligence and personality aren’t affected. You can walk and run and basically get by. It is this push/pull of everyday existence that takes some getting used to; six years in and I’m not used to it yet. It’s the fact that on any given day, I don’t know exactly when we’ll be pushed over the edge of normal and into a shadowy world where I must stand up and admit that, while we’ve been doing a good job of faking it, we’re not just like everyone else.

This is an extract from the ebook The Edge of Normal by Hana Schank