We, as parents are always striving to make Livvy’s life, whilst living with Xeroderma Pigmentosum, as normal and comfortable as possible. One area that we’ve always had a problem with is our windows (“obviously” I hear you saying, as they are the main source of UV light when inside a building) the problem I’m referring to is with fresh air or even just a breeze on a warm summers afternoon. At home, all our windows are protected with UV blocking film which allows daylight to pass through the window but stops the UVR from doing so, therefore our house is lovely and bright and once you close the door behind you our home is a safe haven for Livvy. Our home appears to be just like any other home, this is until we need to open a window, UV light comes flooding in causing a room to not only be out of bounds for Livvy but also dangerous.
We did, until this week, have roman blinds up in all the windows. When the blinds were closed with an open window behind it, to try and allow some air to flow into a room, it didn’t really allow much air in and if the wind picked up it would blow the blind and send everything flying from the window sill and cause UV light to enter the room. For these reasons we just simply never had our windows open when Livvy was home. I have at times opened bedroom windows to let some fresh air in and to stop the room feeling stuffy before the children go to bed, I would always tell Livvy that they were open but more often than not Livvy would forget and walk into a room oblivious to the open window until it was too late causing much upset and distress to Livvy. I felt it wasn’t worth the risk of exposure of UVR to Livvy’s skin but also the upset and distress it caused. Therefore, once Livvy has walked through the door into our home all windows are closed until the sun has safely set behind the horizon.
Earlier this week we had shutters fitted to almost all windows in our home. When the men came to measure the windows a few months ago I asked how strong the magnets were that kept the shutters closed, ‘can you have the windows open and the shutters closed?’ I enquired. I was assured that they wouldn’t move or even rattle. My little brain was working over time trying to figure out if we could have the windows open with the shutters angled a particular way to prevent UV light from entering our safe home.
Shortly after the shutters had been fitted the sky went grey and rain fell for the whole afternoon, very little UVR was in the sky, I’d never wished for sun so much in the past three years since Livvy had been diagnosed. I was so desperate to see if we could have the windows open safely.
Yesterday we woke to a bright and sunny day with no rain clouds up above, normally I would be a little annoyed that the stormy weather had only lasted one day and the sun had made its return but this morning I couldn’t wait to get back home after dropping the children at school to test out my theory. As I played with the slats on the shutter trying to get the right angle that would deflect all UVR away I opened the window as wide as it would go and pressed the button on our meter to get a reading. It flicked between 1500 and 1700, to give you an idea of how high this reading is outside on a dull winters day sometimes we can struggle to get as high as 300. To have a reading this high whilst not actually being outside is astonishing. I closed the shutter expecting to still get a reading I was amazed to see the meter drop to 0. I opened the shutter again and the meter shot up and up over 1000 again, I closed the shutter and it fell to 0 once again. I placed my hand against the shutter feeling the air rushing in. I couldn’t help but smile, I couldn’t believe the window was open wide and there was no reading in the room and nothing was blowing or smashing on the floor. I was so excited, I woke our cat who was sleeping in the same room to tell her but she was less impressed with the shutters as on Wednesday all bird watching from window sills had ceased forevermore.
It’s the simple things that so many people do everyday without realising, that we miss as a family whilst living with Xeroderma Pigmentosum. The simple act of opening a window. I’m so pleased we have found a way around it, as we do with every hurdle that XP throws at us. We sometimes have to think outside the box to achieve a ‘normal’ and comfortable existence for Livvy and ourselves as a family and I guess this is part of living with XP, facing each hurdle as it arrives whether that is going through surgery to remove skin cancer, reassuring our daughter at night when her tears start to fall or opening a window on a warm summers afternoon.