All children should be able to take part in all the fun and wonder of Christmas (Picture: Joanna Hogg)
Cautiously making my way through the minefield of scattered Barbies and building blocks, I place the wooden advent calendar next to the naughty elf who’s come to stay.
My children are sleeping soundly in their beds.
For weeks they have been excited at the mere mention of Christmas, but as much as I love to see my children happy and captivated by the wonder of it all, for me it’s bittersweet.
Christmas also brings challenges for our family.
It’s the time of year where our bubble shrinks, social occasions become more daunting and even getting out of the house becomes a battle of wills. All because my two children and I have the sight condition aniridia.
Aniridia is caused by an under development of the eyes due to a gene mutation resulting in greatly impaired vision.
In my case, I was misdiagnosed at birth and was only officially told I had foveal hypoplasia, a sub type of aniridia, at the age of 27. Genetic testing then predicted a 50:50 chance of my children inheriting the condition, which they both did.
To other people, the most visible sign of our condition is that our pupils are not circular or central. My daughter has a very elongated pupil, her ‘cat eye’ as she calls it, whereas mine look more like splats of paint.
This unusual shape and weakened lens means we lose any sense of fine detail in anything more than a foot away.
We actively avoid going out when it’s dark due to our night blindness (Picture: Joanna Hogg)
We also experience nystagmus – the involuntary rhythmic movement of the eyes, which causes our vision to shake or jump – and photophobia – the inability of the eye to react to changes in light.
This means that, during the day, the light can be too bright, which distorts our vision, much like a photograph that has faded in the sun.
At night, our pupils are not able to enlarge fully, resulting in night blindness – the inability of the eye to react to changes in lighting levels making it very difficult to discern objects, steps and other people walking towards you – due to the lack of light.
All this makes our day to day life challenging, and though we find ways to adapt, at Christmas it becomes particularly difficult.
With shorter days we become more restricted on when we can do normal activities. We actively avoid going out when it’s dark due to our night blindness and because of how vulnerable and unsafe it can make us feel.
Shopping trips suddenly become a feat of endurance too as we try to traverse larger crowds. Then there are the temporary displays, decorations and the constant reorganisation of shop layouts and supermarket aisles, which is very disorientating.
Many traditional aspects of Christmas are also simply inaccessible. Carol services and school nativities are near impossible to attend, never mind enjoy. This is because the print in hymn books is minute and I can never get close enough to see my children’s performance.
Christmas brings challenges for our family (Picture: Joanna Hogg)
All this has, on occasion, left me (and at times, my children) feeling lonely, isolated and overwhelmed. Yet I never want my kids to miss out.
Once the first weekend of December rolls around, we spend time as a family decorating the house.
We have designated positions for everything and use an array of different lights combined with tactile and interactive decorations – our wooden gingerbread house, for example, has movable parts so it can be played with by the children.
Instead of traditional advent calendars, we have our wooden ones, which have large, raised numbers so the children can find the right days without having to pester Daddy, who is fully sighted. Each year these are filled with a different themed treat – this year it’s snow, so they are brimming with white chocolates.
Then comes the joy of seeing the Christmas lights in Oxford Street and Trafalgar Square.
My husband drives us down late when the crowds have cleared and we drive around London sipping hot chocolate as the children use their iPads to take photos and video of all the decorations.
Rather than just looking at glowing balls of indistinguishable colour, my children are able to zoom in on the displays and explore every last bit of detail. This is one of those rare times where technology really is a wonderful thing.
Christmas isn’t complete without a visit to the big man himself (Picture: Joanna Hogg)
I adore seeing my children so excited about the different displays and themes, especially as it is something that I never had the opportunity to enjoy fully when I was a child.
Next comes the children’s annual trip to panto with their Brownies and Beavers Packs.
In the past we attempted a trip as a family but it didn’t work. Someone was always left out, and on occasion we’ve been asked to leave as we were disturbing people around us by talking through what’s happening.
Now though, their pack leaders arrange for front row seats and describe the show to them, meaning they never miss out on such a strong festive tradition.
Of course, Christmas isn’t complete without a visit to the big man himself. But for our family it takes a lot more planning than most.
Access to the venue needs huge consideration; many places have low lighting and uneven ground, making it very hard to navigate. And we also need to ensure that Santa knows we are a sight impaired family.
We learned this lesson after one particularly awkward visit when the all seeing and all knowing Santa kept telling the children to ‘watch for him in the sky’ and referencing pictures on the wall that we just couldn’t see.
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We also make a point of ensuring the gifts the children receive from him are accessible with high contrasting images and online guides or instructions. Some years, I have personally purchased gifts for Santa to give to my children to ensure they get something appropriate, like large print books and tactile or audible games.
All this is to say that, when Christmas rolls around, I’m just as busy as all the elves. It takes even more planning and consideration than most might think, but I’m determined that my kids always get to enjoy the magic.
So when I discovered Letters From Santa by RNIB this year I was thrilled. The scheme provides letters from Santa in formats that are accessible to children living with a vision impairment. Children can receive their letters in audio, braille or large print format.
I can’t wait to give my children an extra sprinkle of magic this year and in the form of something that they can access themselves and that is created specifically for them.
All children should be able to take part in all the fun and wonder of Christmas, it benefits not only their own mental health and wellbeing but also builds strategies and bonds with the wider community.
Accessibility doesn’t need to be complicated. A little understanding and awareness can make a world of difference for people with sight loss.
To find out more about how to support RNIB (the Royal National Institute of Blind People) in bringing Christmas joy to children living with a vision impairment, visit www.rnib.org.uk/christmas.
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Our day to day life challenging, and though we find ways to adapt, at Christmas it becomes particularly difficult
