One of the most difficult aspects of living with xeroderma pigmentosum is getting other people to understand the importance of Livvy not coming into contact with UV light, no matter how little or for how long. We take a zero tolerance stance on UV exposure, we don’t consider any level of UV safe no matter whether the source is from the Sun or from artificial lighting within a building.
Why is it then that almost three years later people can not understand this? On Friday, at school, a door was opened by a child, but only after they had been given consent by a teacher, ‘go quick’ was their command when a child tried to go out via an external door whilst Livvy was in the same room.
I always try to compare Livvy’s situation to others to help people understand how significant UV exposure is to Livvy’s overall health. If a child was extremely allergic to nuts would you let another pupil walk thought the class room with a tray of nuts, quickly or not I can’t see any teacher taking that risk so why take the risk of opening a door when it’s just as easy for the said child to walk around to another external door in an area away from Livvy? Livvy doesn’t have an instant reaction to UV light, it’s a build up over time, if she’s exposed for a few seconds every day it’s only a matter of time that it will catch up with her and another skin cancer will appear. It’s a true and real risk.
I’ve been in two minds if I should write a post about this incident due to it being a real concern about staff at Livvy’s school, I don’t want to be seen as bad mouthing staff, or putting false information out there as at this time I only have Livvy’s version of events. However it’s been niggling at me all weekend, on Saturday morning I went on my usual early morning walk with my friend, we normally walk between 6 and 10 miles whilst everyone else is still in bed and we put the world to rights moaning about both of our weeks, the ups and downs. It gives us a place to vent and get anything we need to off our chests ready for the next week ahead. Obviously this incident took up a fair few miles in our walk. My friend was as annoyed as I was if not a little bit more, I think over time I’ve become used to the lack of knowledge and understanding that surrounds Livvy. My friend however has not become as blasé as I have over time.
Normally a good moan does the trick and an incident such as this one no longer niggles away at me however this one was cutting in a little deeper and over the weekend it stayed with me, I even went for a run which is also a good stress reliever but Monday morning has arrived and it’s still there bitting away at me, not sitting easy in my conscience. I’ve brought the matter up with school, not to point the finger, not to blame and cause upset but to educate and inform.
In the back of my mind I think about Livvy and if it’s niggling away at me what’s going on in her head? Is she feeling let down, has she lost trust in the very people that are there to protect her? It’s my job as her mother to ensure she is safe at school. I want her to know I will always have her back, even if other adults around her don’t fully understand her condition, I will be her voice and always fight her corner.