Telling it like it is
When Hana Schank’s daughter was diagnosed with albinism, she struggled to cope. But now they’ve found a new normal…
My daughter is the fairest of them all
Career, marriage, babies – that’s what I’ve always wanted from life and, preferably, in that order. I had it all planned and sure enough, by 36, I’d climbed the proverbial ladder as a technology consultant, and my husband Steven and I were expecting our second child. I prepped for the birth as though there would be an exam. and when my daughter nora was born in February 2009, it seemed as though everything had fallen into place, but I was soon to discover that there are some things you can’t plan for…
From the moment Nora arrived she had everyone charmed. The nurses couldn’t believe what a good baby she was – quiet, content, and oh-so strikingly blonde. In fact, I remember being confused by how impressed they all seemed by her fair hair. ‘Surely you get blonde babies all the time?’ I asked. ‘Oh, yes,’ they replied. ‘But not like this, not with eyelashes and eyebrows to match.’
Of course, I didn’t think anything of it. But bringing Nora home two days later, the idea that something wasn’t right started to niggle at me. She didn’t behave like her brother did when he was a baby. I’d walk in to check on her while she was napping and I’d find her awake, staring at the ceiling, her eyes moving around as though they were chasing something.
I told myself my hormones were just making me neurotic. Only, when Nora was eight weeks old, having just recovered from a fever, I took her for a check up.
Her temperature was down, but the doctor noticed something. ‘Do you see that?’ he asked, gesturing to her eyes. They were moving back and forth. ‘Yes,’ I replied, somewhat triumphant I hadn’t been imagining the whole thing. ‘What is it?’
‘I don’t know,’ said the doctor. ‘Do you think she can see?’ He said it so casually, it took me a second to register what he was actually asking me. Stumbling, I told him that I was sure Nora could see her toys, so yes, surely that meant she could see. Despite my clear lack of a medical degree, the doctor counted my words as fact.
He scribbled the word nystagmus – involuntary eye movement – in his notes and that was it. But of course I was frantic. Steven couldn’t bear to discuss even the possibility that our daughter might be blind, and back home I’d watch Nora, desperately trying to find some evidence that I was right – that she could see.
The following week, we took her back to the doctor and this time he had some news for us. ‘Is there a history of albinism in your family? he asked. ‘I’ve been thinking about it and she’s so blonde – and involuntary eye movement is a symptom, too.’
shock diagnosis
I sat there, his words flying around my head. And, as I tried to makes sense of what he’d said, he kept talking, explaining a neurologist would be able to test Nora. So, that’s where we ended up.
As the neurologist tried to clamp Nora’s eye open and peer in, she writhed in my lap. At first, he was convinced she was fine, that the nystagmus would go away in time, but just as we’d put Nora into her car seat and headed for the door, he called us back. ‘Actually, let me just try
‘she’s brave and very feisty’
and get a better look,’ he said. I always wonder what would have happened if we’d managed to get through that door.
As we sat back down and he glanced into her eyes again, he turned to us. ‘There’s no foveal pit,’ he explained. ‘It’s the part that provides the clearest vision. Your daughter has albinism.’
As the words left his mouth my tears started to fall – Steven held me and my body shook with sobs. I listened as the doctor explained that albinism was a congenital disorder, a mutation of the genes that affected vision and skin pigmentation. There was no cure. Our daughter would be legally blind – she’d only see things directly in front of her and would need to wear special glasses to protect her eyes from sunlight. Worse still, she’d be more susceptible to sunburn and skin cancer.
In the following months, I struggled to come to terms with Nora’s diagnosis. Why her? Why my daughter? Thrust into a new world full of doctors appointments and meetings with specialists I felt adrift. I still had a baby who needed me, who needed to be fed and cuddled, but she wasn’t the baby I thought she was.
I was just going through the motions and I’d torment myself thinking how different her life would be to her brother’s and everything Nora might miss out on – like driving and travelling the world on her own – and what if she was bullied? After all, people don’t know how to talk about disabilities. I didn’t at first and family and friends struggled, too. I lost count of how many times I had to tell people not to refer to Nora as an albino. ‘She has albinism. You wouldn’t call a child with asthma an asthmatic, would you?’ I’d explain.
And, her hair that had once been such a positive talking point became something I loathed. ‘Oh, I was blonde like that when I was her age,’ people would coo in the supermarket. It made me want to scream.
Milestones
It’s hard to look back at that time. Of course, I knew it could have been worse – Nora wasn’t dying – but the word normal kept playing on my mind, it was something my daughter would never be.
It was only as Nora started reaching her milestones – saying Mama and taking her first tottery steps – and her strong will began to emerge (she’ll argue that it’s raining outside even when it’s not!) that I realised I didn’t need to worry about her or about being ‘normal’ – we’d make a new version of it.
And we have. Today, Nora’s blonde hair and pale skin still makes her stand out from the crowd – so do the dark glasses she has to wear. But seeing her happily chat to the neighbours about her condition or explain to her school friends that they’ll have to stand right in front of her, so she can see them, makes me feel so proud. My daughter is so much braver than me and at eight years old, Nora never lets anything hold her back.
Using an ipad with a large font she’s been able to become a voracious reader, she’s friends with everyone in her class and she’s even in a rock band. Oh, and did I mention she’s very, very feisty.
Every day she tries to persuade me that we need a dog. And I know it’s something she’ll eventually wear me down on. You see, my daughter – my funny, clever, and still oh-so blonde little girl – is nothing if not determined.
✱ The Edge Of Normal by Hana Schank is out now at amazon.co.uk