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'He will never be able to drive.' What it's really like parenting a child with albinism.

Four years ago, I gave birth to my second child via c-section, so when he first emerged into the world I couldn’t see him. But I could hear the laughter of the medical staff resounding in the room. Only when my baby was finally in my arms did I understand the reason for the laughter.

It was wonder.

Usually newborns either have very little hair or a dark mop of it, but Ollie was born with a full head of very fair hair. At the time, my husband and I giddily took this as a sign of our baby’s specialness, nor did we mind the jokes about sexy milkmen that persisted after Ollie’s birth, since both of his parents are brunettes.

Soon other signs of Ollie’s uniqueness arrived, albeit not as cute.

He was never content to lie down examining his surroundings, but always wanted to be held. His eyes often swung from side to side rapidly, as if he was scanning his surroundings for potential dangers.

Then, one mild spring afternoon after we’d briefly enjoyed some sunshine, I saw to my horror that Ollie’s face had bloomed poppy-red. I was appalled by my presumed carelessness. I’d got my baby sunburnt!

Finally, when at three months our son still hadn’t made eye contact with us, we took him to the doctors.  The diagnosis was swift and astonishing – Ollie had albinism.

 

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Albinism? I barely knew the word, let alone that my husband and I had been carriers all along. Albinism is a rare, and often misunderstood, genetic disorder. People with this condition have a lesser amount of the pigment melanin, responsible for the colour in hair and skin (hence Ollie’s sunburn in mild weather), and for the development of vision.

Melanin levels vary among people with albinism. Those with the least amount have snow-white skin and hair, and their vision is usually more impaired. But everyone’s eyes are sensitive to the light, and they have reduced vision acuity and depth perception.

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The involuntary eye movement that we noticed with Ollie is called nystagmus and is typical of this disorder, further affecting the vision. (Some call it poetically ‘dancing eyes’.) The precise impact on eyesight, though, is complex to define; it varies greatly among people even when they have similar melatonin levels.

Curiously, one of the first things our diagnostician chose to tell us to explain albinism was ‘your son won’t be able to drive’. I looked at my fairy-fair baby, struggling to imagine him holding a steering wheel, struggling to keep the contents of my stomach to myself…

More recently, I’ve actually met several people with albinism who drive. But at the time, shell-shocked and unable to extract any hopeful information from our doctor – who also told us categorically that ‘glasses don’t help’ – I merely retreated home to grieve.

For the following few months, I woke up every morning with a lump in my throat. I carried my tiny son around strapped to my chest with my own vision blurry – from tears and lack of sleep, envisioning his devastating future.

My baby trapped in the darkness, bored and lonely; my future toddler stumbling around the house and falling, and falling. I had no idea what to expect.

The internet offered a mostly vague, or contradictory, information. I read that it’s normal for babies with albinism to see very little, but later they’ll be able to see more. How much more? How much later?

Then something changed. The change was called Beth. A white-haired ball of energy, a Vision Australia worker with no medical training but zillions of years of experience, she walked into our house and sat down on the carpet near Ollie.

Beth smiled at him even if he couldn’t see it, and sang to him until he smiled. Then she looked up into my wet eyes and said, ‘He’ll be fine.’ Just like that.

Not worried about formal protocols or giving ‘false’ hopes. He’ll be fine…

Soon after, Beth arranged for us to meet our future – some older children with albinism. None of them ‘stumbled in the dark’, although some needed walking sticks, and many rode bikes.

On Beth’s advice, we also joined the Albinism Fellowship of Australia and attended their conference, where we also met our more distant future – adults with albinism who were scientists, musicians, teachers, doctors.

The more people I met, the more I watched my baby who was now crawling all around the house (not stumbling), the looser the lump in my throat became. We bought Ollie his first glasses – orange ones, with teddy bears – when he was two. They do help him see. (They also help him fancy himself as Harry Potter.)

Four years since that diagnosis, and I now know my greatest fears related to the physical side of Ollie’s disability haven’t materialised. He can’t see the pictures shown during storytime in his kinder, nor can he see much in the theatre even if we sit close to the stage, and he loses us easily in public places.

On Mamamia’s parenting podcast This Glorious Mess, Holly Wainwright and Andrew Daddo speaks to Lee Kofman  on parenting a child with albinism. Post continues below.

But then, most mornings he wakes up with a huge smile, terribly pleased with this complex world.

He rides his scooter with gusto and doesn’t shy around playground climbing equipment, even if it presents him with more challenges than the other kids. He began reading and writing before he was four, which is also when he performed his first piano concert. He makes friends easily.

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Still, I don’t lie around wearing laurels… Soon, I suspect, my boy will be fighting battles that have nothing to do with ‘stumbling in the dark’.

Those meetings with our future were more complex than I’ve described so far. I met lively children and accomplished adults, but many of them carried wounds. I’ve noticed that albinism conferences always feature talks with titles such as ‘Dealing with negative comments’ or ‘Stares, smirks and shout-outs’.

Somebody told me he used to permanently wear a low-slung cap to conceal his nystagmus. (For this reason, some people with albinism avoid maintaining eye contact with their interlocutors.)

And as much as I heard stories of accomplishments, I also heard other tales: about a child regularly ridiculed at school for looking closely at his textbooks; children left out of games on playgrounds because they couldn’t recognise their friends from a distance; and even of a little boy spanked by his ‘normal’ classmates…

Appearance plays a role in the stigma surrounding albinism. The pallor brings to mind often-sinister visions of ghosts, vampires and other otherworldly beings.

Even today, some believe that people like my son can conduct electricity, read minds and, most bizarrely considering their poor vision, see in the dark. In popular literature and film, characters with albinism are often sociopaths and assassins, no matter that in real life most wouldn’t be able to shoot with precision.

My boy has some pigment, so these days his hair and skin are just ‘normally’ fair. But his dancing eyes are there for the world to notice, as well as his need to look closely at things.

The possibility that he might be bullied at school has become my new nightmare. I know from experience what it’s like to have a bodily difference. My own body harbours many disfiguring scars (a result of multiple childhood operations) which – after having been bullied in my teens – I’ve been concealing with clothing and jewellery.

I’m a writer and for years I wanted to write about my scars, but couldn’t find the courage to reveal what I thought of as my shameful secret.

Three years ago, as I was coming to terms with Ollie’s condition, I knew it was time I wrote a book. By now, though, I wasn’t interested just in my own story, but also in the stories of any visibly different people, including those who, like Ollie, cannot hide their differences even if they wish.

I wanted to explore lives with bodily differences honestly, without euphemisms, to say that no, not all bodies are the same, because some bodies can make us socially vulnerable. Imperfect is now out in the world and I’m grateful to Ollie for curing my writer’s block and helping me have this public conversation, as well as for illuminating my mornings with his glorious smiles.

May these smiles continue lighting the world rather than be dimmed by it.

You can buy Lee Kofman’s book right here, Imperfect: How Our Bodies Shape the People We Become.

For more, you can visit Lee Kofman’s website, or follow her on Instagram, Facebook or Twitter.

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