We were in a shop over the weekend looking at lamps, cushions and throws for Livvy’s newly decorated bedroom. I realised we only had one child by our side so gave my usual mummy call for Eddie, Phil shot me with one of his looks as if to say why so loud? And then turned the other way just to make sure no one thought he was with the loud mouth who can’t keep track of the kids!
Eddie came running over with a rather angry face, ‘what’s up Ed? Did you get lost?’, thinking he might be annoyed with us as he lost track of us whilst looking at the toys.
‘No I knew where you were, it was some people over there, saying ‘look at her with that on her head, quick this way she’s down here’, then they came running after Livvy to try and see her again!’
‘Really?’ I asked, a bit shocked by the vulgarity Eddie had witnessed and the clear upsetting effect it was having on him.
‘Yes’ Eddie snapped back at me, his anger growing.
I glanced over to Livvy to check she was ok and it wasn’t causing her any upset at hearing Eddie describe a clearly upsetting scene.
Livvy had a grin on her face as my eyes met hers, ‘it’s because I’m famous! I’ve been in the news you know!’.
Phil and I started laughing at Livvy’s response, ‘that’s true Livs maybe that’s why they were chasing after you, for an autograph’.
Eddie couldn’t help but smile although still clearly upset.
Last week we made it into a local paper and also a local radio station due to our night garden and the fundraising that people had done to help us get the build started. I have found over time that when it comes to the media they can’t get enough of our story, I often have the BBC ringing asking how things are, fishing for a new angle on our story, which is how the night garden made it on to the radio and news. I felt as we had so much help to achieve the garden then it was only right to show our thanks by going out there and thanking everyone openly in the media. The downside is my phone doesn’t stop ringing with journalists wanting more from us, wanting to get us in the national papers, on the local news channel.
I decline every offer and slowly the phone stops ringing. It feels too intrusive, like a circus show, everyone wanting to see into our world to see how we live, praying on our vulnerable side just to get a news story. Phil thinks it helps for people to see and to understand what living with XP is like, which I agree it does but at the same time this is our world, our everyday life, and I don’t want to be a headline.
I never tell them about my blog, they would have a field day! It’s my space to talk about our everyday, living with xeroderma pigmentosum, it helps me get through the hard days having somewhere to come and talk about our world. My friends and family know where to come to read it and I think all my readers from near and far that have stumbled upon my blog and often stop by for a read have found it because they are living with XP like us or they identify with a part of our life that is documented within my blog. We are not a news story, we are a normal family getting by any way we can and unfortunately normal doesn’t make the headlines.
People will always be interested in us and Livvy but it’s my job as Livvy’s and Eddie’s mummy to keep them protected, keep life normal, yes Livvy has got XP but she is still a 7 year old girl. I doubt the people at the weekend had seen Livvy in the news, it’s a standard response – staring, pointing and following for a better look, but if it helps Livvy to think that that’s the reason people are looking at her and not because she’s wearing her protection then I guess it’s worth being in the local news every now and again.
We just need to work on Eddies ability to turn a negative situation round and see the brighter side of a seemingly negative stare or comment, no matter how impossible it may seem at the time. Eddie’s protective nature comes out in these situations, which in turn turns to anger as I guess being nine years old he doesn’t know how else to handle such difficult situations. I’m sure in time he will develop his own coping strategies just as it would seem Livvy is doing by using humour as her armour.