For the past three years our lives as a family have been ruled by XP. Everything we do has to be weighed up against XP and the needs of Livvy, there are so many things that people don’t ever consider when going out for a family day or even just to pop into town to do some shopping. Public toilets for instance, what do you do if the only toilet available has a window in the toilet cubical? I’m sure my dear readers by now will have some idea of the challenges faced by Livvy on a daily basis. I have found that although our daily lives are ruled by XP, ensuring that Livvy is kept in her safe UV free bubble, as a parent I also mark my year by hospital appointments and surgery.
Let me explain what I mean a little more, I don’t know if its just me or if everyone does this but as the weeks and months pass by you look forward to an event or a celebration such as Christmas or a birthday, maybe the school holidays, planning things in a termly rota. Every month there is a birthday, anniversary or national celebration to think about, before XP I think that’s how I saw our year in my head. Grandmas birthday early in January, Valentine’s Day in February, Easter holidays leading to the summer and Livvys birthday, with other events going on in between time. When planning things you think about things before and after these yearly events, am I making sense? or am I on my own here?
The point I’m trying to make is that since Livvy was diagnosed with XP in June 2014, I have found that the events that I measure my year by are no longer birthdays or anniversaries but hospital appointments and surgery. Things became ‘after XP clinic’ or ‘before her local skin check’ and no longer ‘before Easter’ or ‘after my birthday’. Our lives are ruled daily by XP, the limitations it puts on us as a family and Livvy as an individual. But over time I have noticed that it rules my year too, Livvys hospital visits are so regular that these have become my markers in time, Livvy requires a skin check every three months alone at a hospital not to mention other appointments and meetings that Phil and I may have at school regarding XP. So its understandable how over time these significant appointments have become the most prominent event in my calendar. That’s not to say I don’t look forward to other none XP events, its just I find myself thinking about things before and after an appointment and nothing else.
I think what has made me realise that I do this is for the first time in a long time my next ‘event’ in my head that I’m counting down to is our family holiday to Cyprus. Yes, I said Cyprus and I said family holiday! I can imagine what my dear readers are thinking, ‘why are you taking a child that can not be exposed to sunlight to the beautiful sunny island of Cyprus?’ Bear with me my dear readers let me finish my point of my yearly markers and I’ll come back to our impending holiday.
So, as I was saying I’m counting down to our holiday yet we have a visit to the XP clinic in London before we go as well as a skin graft and general wound check from Livvys last surgery with her plastic surgeon, also in London, both very significant dates and highly important yet the next major event in my head is neither of these but our holiday. I see that as so significant, its taken almost three years but XP is slowly losing and we are winning, it can try as it likes to take over everything in our world but we are starting to live again and XP is taking the back seat.
So back to our holiday, when Livvy was in surgery in December and the hours passed us by Phil turned to me and said we are going on holiday next year! We are going back to Cyprus, we all need a holiday and time away from hospital appointments and surgery. And just like that we started planning our holiday. Why Cyprus? When Livvy was 14 months old and Eddie not quite three years old we had our first big family holiday abroad to Cyprus, we spent many hours playing on the beach in the hot September sun, this was before Livvy was diagnosed. Looking back it fills me with mixed emotions, we had a wonderful holiday and loved walking along the beach every night before bedtime but in the same breath I can’t help but think so much damage was done to Livvys skin, its no ones fault it’s just a fact that perhaps without that holiday Livvy would have been spared some of the many surgeries to remove skin cancer.
So I guess we are returning to the scene of the crime but this time we know what we are living with and we know how to have a great holiday without Livvy ever being exposed to UV light. We have booked a villa with a heated pool, our plan is to sleep all day and play all night, swimming by the moonlight in the heated pool, hopefully the heated pool taking the edge off the cool February nights. I’m excited as are both children but I can’t help wondering what on earth we are doing?
We want to show Livvy that anything is possible and exploring an island that we once thought we would never travel back to as a family is a major leap in showing her how she can live a normal life with Xeroderma Pigmentosum. I hope that 2018 is the start of Livvy having less skin cancers, less surgery and less heartache, so what better way to start 2018 by booking an amazing moonlit holiday.