Ember is sticking magnetic letters to the wall in the convenient little play cubby the clinic has set up under the stairs. She is playing with another little girl about her age, although they alternate between playing nicely and tussling over the best toys, in line with the usual pre-schooler politics. She is happy enough at the moment, but I can tell she is getting tired, and bored, and hungry, and grumpy. On cue she turns to me.
“Mummy, let’s go home” she drawls in that singsong whiny pitch they seem to learn on their third birthdays. Hers was only a couple of weeks ago and she has perfected it already.
“We can’t go home yet sweetie, we have to wait to see Dr Dickson again.” She sighs, but is pacified for now.
I stand in my usual night-time pose, leaning against the ladder of Ember’s loft bed, finishing the final pages of ‘Hairy Maclary Mini-monster’ – Em’s current favourite book which I can recite in my sleep (and sometimes do). I look at her, my mouth opening to say goodnight, when I notice something strange about her eye. In the lengthening dark of her room, her pupils are wide, surrounded by a thin circlet of deep brown. The left pupil is solid and infinite black, but something white and grey and milky twists in behind the surface of the right. The whole pupil seems translucent, like the proverbial window, (although I am sure I am not seeing her soul). I frown, but shrug it off. Probably nothing to worry about.
The nurse approaches. “We need to put in some more drops”.
My heart settles into the pit of my stomach. The drops sting; we have had one lot already. The first time was an unknown; getting another lot in is not going to be so easy.
“Ember, come here sweetie, the nurse needs to put some more drops in your eye.” She approaches but with trepidation, seeing the nurse holding the bottle of drops. She slithers onto my lap, buries her head into my chest and snakes her little arms around my neck.
“Don’t want them” she mutters, my body feeling her words more than hearing them.
I hold her tight for an extra moment then pull back, so she has to look at me. Her eyes are already dilated from the first lot of drops and behind her right pupil I see it again, the filmy white thread which has led us here.
“Can you be a brave girl Em? Dr Dickson needs the drops in your eyes so he can have a really good look into them and check them with his special machine.” She just buries herself further into me, so I resort to that time-honoured parenting method: bribery. “I’ll get you a lollypop when we go home.”
She sighs a little, then turns herself to lie across my lap, head lolling back, the new position already starting to become familiar. The nurse quickly pulls Ember’s eyelids open, and drops in the stinging liquid, one eye then the other, before Em can change her mind. Em blinks, rubs her eyes and whimpers a little, but doesn’t cry. She is already braver than I am.
I notice it again the next night, and the next. After a week or so I mention it to Simon, who hasn’t noticed it, and can’t really see what I am talking about. I try Googling a few search terms, but nothing really comes up. It begins to bother me though, so I ask Simon to make Ember an appointment with the GP. He is at home with her two days a week, so makes her an appointment for the next Monday. I am almost convinced that I am just being a silly, paranoid mother, that it is probably nothing.
That Sunday we go to visit friends. Amber and I have been friends since our mothers met when at playgroup when we were babies, and now we are both mothers ourselves. I tell her about what I have seen, can see. She has four kids and is an early childhood teacher, but this isn’t anything she has ever heard of either. “Have you tried Googling it?” she asks. “Yes,” I reply, “but nothing came up. So it’s probably nothing.”
Ember has had enough of playing, enough of being at the clinic, and is on my lap. She keeps rubbing at her eyes and pulling at various bits of me, trying to inveigle me to take her home. I wish I could. Finally the nurse calls us through, but it’s only to another waiting room. I have spent time in hospitals – I know this tactic. I can never work out whether I appreciate the change of scenery or resent the disappointment after presuming I will actually be seen. Nevertheless, the fresh set of slightly mangled grubby toys, books with no covers, and covers with no books in the toy basket is enough to distract Ember from her moaning, so I am grateful, at least, for that.
When we are called in, we find ourselves in a room that reminds me, bizarrely, of my school dental clinic. The standard eye chart of somersaulting capital Es is at one end, a chair and a collection of vaguely threatening-looking implements is at the other. I sit on the ‘patient’ chair with Ember on my knee; I try not to clutch her too tightly. She is mute with nerves at first, but the nurse slowly coaxes smiles out of her, and gets her to do what is needed with talk of cleverness and sticker rewards.
The nurse takes her through a flip book of shapes – a circle, a square, a heart, a house – these shapes will become very familiar to me over the next few months. The nurse places a patch over Ember’s right eye, and goes to the other end of the room, holding up a chart with the same shapes in decreasingly smaller rows. Ember has a great time showing how clever she is, telling the nurse every shape correctly. At least I think she does; it gets a bit small for me to see down at the bottom. “Perfect vision” the nurse says. Then she swaps the patch over to Ember’s left eye, leaving the right eye to prove itself one way or the other. I hold my breath.
Back home that afternoon, Simon at the “shop” (i.e. pub) and Ember happily ensconced in front of a DVD, I mull over the conversation I had with Amber. I decide to consult the online oracle one more time. As before, ‘transparent pupil’ brings no results. Then I type in ‘white pupil’ and the world ends.
Suddenly a list of websites fills my screen. The word that keeps jumping out at me is ‘leukocoria’. I don’t know what that means, but I know it doesn’t sound good. A few clicks later I am terrified.
“Leukocoria (or white pupillary reflex) is an abnormal white reflection from the retina of the eye. Leukocoria is a medical sign for a number of conditions, including Coats disease, congenital cataract, corneal scarring, melanoma of the ciliary body, Norrie disease, ocular toxocariasis, persistence of the tunica vasculosa lentis (PFV/PHPV), retinoblastoma, and retrolental fibroplasia. Because of the potential life-threatening nature of retinoblastoma, a cancer, that condition is usually considered in the evaluation of leukocoria.”
None of the links say “Leukocoria - probably nothing.”
Immediately Ember starts picking at the plaster patch over her right eye; she is squirming and clearly unhappy. The nurse briefly tries the picture poster, but Ember won’t even look in that direction so there is no way to tell how much she can see. Then the nurse sits in front of Ember and takes a small tub of hundreds and thousands from amongst the scary-looking medical implements. It seems strangely out of place, as if I have been mistaken and all the implements are in fact odd-shaped baking trays and measuring spoons. The nurse takes one out of the tub, and places it on her hand. I am momentarily distracted by wondering what the singular of ‘hundreds and thousands’ is. Then the nurse asks Ember to pick it up off her hand.
Ember reaches out and tries to grab the tiny ball from the nurse’s hand, but she is reaching under the nurse’s hand, not even close to where she needs to be. Her hand is wavering and uncertain. This is the moment when I know, I know everything the doctors will tell me from this point on, and I have to blink hard to hold back the dam that is about to break behind my eyes. My heart has leapt up my throat and is sitting in my mouth, choking me.
“That’s not good, is it?” I manage to get out.
“No.” The nurse is brusque. In hindsight I realise this is hard for her too.
I sit in shock, scrolling through hundreds of links, searching for the one that will offer me some relief. Ember is still sitting happily watching “Dora the Explorer”, completely oblivious. I leap up from my chair and hug her violently. The internet has told me that another way to check for leukocoria is to take a flash photograph – a normal eye will produce the red-eye reflex; an eye with leukocoria will flash back milky white, like the eyes of a cat or dog caught in a flashbulb. I let go of Ember and find the camera. Taking a deep, shaky breath I turn the flash on, and snap off a couple of pictures, Ember waving me out of her way crossly. She has seen this episode a thousand times already, but perhaps at three it is still uncertain whether this time Swiper will actually succeed in his swiping or be thwarted yet again by the ever-resourceful Dora and Boots.
I don’t want to look at the photos. I don’t want to see, don’t want to have to accept what my brain is screaming at me while bursts of adrenaline fire through my body.
I look. The left eye contains a perfect circle of red, but all I can look at is the right. It beams back at me – grey and white and milky. I am cold and shaky and panicky and I wish Simon would come home to tell me it’s all ok, it’s nothing, it’s probably nothing. I keep clicking through the links, needing to know more even as my body desperately tries to reject what my brain is insisting.
Back in the waiting room I feel like my limbs have become longer and I don’t know what to do with them. My phone rings and I clutch it like a lifeline – having something concrete to do is exactly what I need. It is Sarah from work – she knows where I am, but not the magnitude of what is unfolding.
“Everything ok?” Her cheerful concern is my undoing and I can’t speak for a moment.
“No” I manage.
“Is Simon there?”
“Do you want me to come?”
I am an independent person; I hate asking for help.
Before she can arrive we are called back in to see Dr Dickson. He sits Ember in front of the eye machine and looks again into each eye in turn. She is having a great time, resting her chin on the chinrest and sitting super-still while he looks. For some reason she loves this machine, thank goodness, and is bristling with pride at having been told how good and clever and grown up she is, over and over again, all day.
Dr Dickson tells Ember she can get down, presents her with yet another basket of toys and she busies herself with a one-armed plastic super hero. He turns back to me.
“Do you have anyone here with you? Your husband?”
“No, he’s at home. We have a new puppy.” I offer, lamely. “My friend is coming, from work.”
“I think you know what I’m going to tell you, don’t you?”
I swallow, then utter the word that has been pulsing in my brain since yesterday afternoon.