Tuesday, 16 February 2010

What the eye sees

I've always been very thankful that my children have been blessed with good health over the years, with just the odd little ailment, cough, cold or tummy bug.  Dentist visits have always been successful, in and out of doctors surgeries with basic prescriptions and head denting visits by Joshua to A&E thankfully resulting in nothing more than a bit of glue and plenty of calpol.  Eye tests have been perfect...

... apart from Eleanor's.
Eleanor hasn't been so lucky.  We noticed her left eye pulling in ever so slightly when she was a few months old.  It happens with children's eyes, wonky one minute, fine the next.  But it didn't straighten.  After pointing it out to the Health Visitor and being told it would correct itself by the age of 2 we ignorantly took this on board believing it to be the case (note aside, Health Visitors are now not my favourite people when it comes to giving 'advice' on childcare).  So, the months passed and still her eye didn't improve.

On a routine visit to the hospital with Maddie to diagnose and treat a rather bad case of blepharitis, the opthalmic registrar noticed how bad Eleanor's eye was.  Maddie was quickly dealt with but within an hour, Eleanor had been pulled to the top of the waiting list, pushed through opthalmics and eye clinic, diagnosed with hyperopia, amblyopia, astigmatism and strabismus (in laymen's terms: long sight, lazy eye, squint and cross-eye).  Urged very strongly to have her glasses prescription made up that very day, Andy and I left the hospital feeling very let down, hurt and angry, more for our daughter than ourselves. 

I remember being at the opticians that afternoon and asking the assistant to set up the lenses to the way Eleanor could see.  When I put them on I was horrified.  All I could see was blobs.  A red bus drove past the window and it's only because I knew by the size and shape that it was a bus.  It explained so clearly to me why Eleanor had never picked up a book, never wanted to watch TV and only wanted to play on large toys outside and why she never had an interest in catching a ball.  She simply couldn't see them.

So, hence the patching commenced.  Nearly three years of having her good eye covered for six hours a day in order to force the bad eye to work.  Throughout our visits I have learned that it's not actually her eye at fault.  It's the brain.  The eye doesn't send a good focused picture to the brain, so the brain sends a signal to effectively shut down the eye and force the other one to work instead.  The patching seeks to correct this by giving the false impression the good eye is now not functioning, thus forcing the other exposed eye to work.  All very clever .... and effective.

At the start of her treatment her sight was so bad that when she had the glasses we had to hold her hands down the stairs.  The focus was so sharp, so she had to readjust to everything being visible for a change.  Within a month she was watching TV, opening books and starting to pick up pens and paper.  She progressed from looking at shapes and identifying them, to going into school and learning her letters in order to do proper eye charts.  She improved from seeing a haze of blur to seeing pictures from dots hidden within other coloured dots.  She managed to get her left eye above the line required for driving visibility.  All was good.

Whilst all this treatment was going on, we also opted for her to have squint surgery.  Now here, I have to confess and be totally honest that in the past when I have seen people with cross eye or eyes wandering outwards, I have always found it rather visually amusing.  Not anymore.  The thought of people staring and ridiculing my little girl was too much and rather than have her exposed to taunts about her looks, we requested corrective surgery to straighten her eye to give her a normal appearance.  I don't like referring to it as plastic surgery.  That's when people alter their normality to abnormality, this was the other way round.  So, aged 3 she underwent her very first surgery.  I don't regret for one minute being vain about my daughter's appearance.  She doesn't even remember having it done.

Over a year ago, she was allowed to remove the patches and go a year without them.  She was ecstatic.  Her eye had improved so much that she had levelled to the vision of the right eye.  Her right eye is long sighted too, but without the additional complications of the left one.

Last week we returned to opthalmics for her eye test and in walked a confident happy little girl.  Out walked a thoroughly devastated, upset and hurt little girl.  Her eyes had deteriorated again so badly that she has to start patching again.  Not for one or two hours, but again for the full six hours daily.  This time, no amount of telling her how beautiful she is, or explaining that her eyes will improve will make her feel any less of, in her own words, 'a freak'.  It was hard to hold back tears with her sobbing on my lap when she explained that all the boys at school would hate her, how the girls would be nasty and call her names and how she won't be able to see her work and how the teachers would get cross.  A six year old brain is a very confused little brain when assumptions are made on appearance alone. 

But she's doing well.  We have a few tears each morning when she has to pick out her patch.  We have requests every ten minutes to remove the patch and we have very challenging behaviour on a daily basis as she yearns to have attention to feel accepted and loved as she feels so different.  My patience is tested every single day as she can be extremely demanding wanting to be the centre of attention all the time.  She's a pretty loud and lively character at the best of times, but these last two weeks I've noticed a significant increase in sulkiness, petulence and general 'bratty' behaviour.

But I can see beyond the mask.  Underneath is a little girl who feels odd.  Who feels she's a freak and who doesn't understand why her eyes don't work properly.  Underneath is a little girl who I caught hitting her head in order to get her brain to tell her eyes to work.  Underneath is a little girl who was crying so much at being called a pirate at school, that the tears soaked away the sticky and she had to have a spare patch put on by her teacher.

It breaks my heart to see her with her patch on.  It breaks my heart that she struggles to see with it on and tells me that she has a special helper in class now to read to her in lessons.  It broke my heart she had to have it removed for a maths test, just so she could see the paper and it breaks my heart that I can't tell her when the patching will end.

So, we soldier on. She struggles and misbehaves in order to get attention and acceptance and I do my best to accept the behaviour to a limit before putting a halt to the persistent attention seeking. It's a fine balance and I don't know if I'm getting it right or not. But whatever I'm doing, I'm doing it because I love her immensely and see a wonderful, talented and beautiful little girl peering at me with a slightly better right eye and a rather modern hip pair of glasses.