I’ve started writing so many blog posts over the past month. One for sports day, an update on the swimming situation, the excitement over the World Cup, so many half written blog posts just left mid paragraph waiting for me to return. 

So many topics, so many events to cover yet none feel right, none are capturing my current feelings, my current mood.

Any of my dear readers that are in the UK will know that this past month the country has been gripped by an extreme heat wave, grass everywhere turning yellow from the intense heat. Our normally green and glorious land turning a pale shade of yellow, wild fires taking hold of our moor land, stories of roads melting and swallowing up vehicles. As always when the weather turns so extreme talk of the summer of 1976 resurface, how will this year compare to the drought of 76? Will this summer beat the records of 76? Will the rain stay at bay for as long as it did in 76? 

The weather broadcasters use language alien to me when describing this type of weather, beautiful, glorious, excellent, wonderful….. 

Going back and reading my half written blog posts I have somehow skipped over the weather, never mentioning it, skimming over it like it doesn’t matter. That’s when it struck me why they don’t feel ‘right’. Am I trying to convince myself that I’m ok with this weather? If I don’t write about it then its not happening?

When I set out to write about our world it was always a place of honesty, of the real us, the real effects of living with Xeroderma Pigmentosum, and my half written posts did not reflect this, yes they were about real events and updates from our world but not about how this weather is effecting us living as we do when the sun is our real enemy.

Like any army when the enemy is so powerful and reigning down on us constantly, barraging us with lethal UV rays, not giving us room to plan an attack, we have retreated. Retreated to the safety of our home, our safe environment where UV rays cannot reach us. 

This does not mean we surrender, we do not concede defeat we simply need time to be, time to breath and plan our own escape, escape from a world where we can not exist during this intense heat, this extreme weather.

We have just two weeks left at school before the long summer holidays begin and we can turn our world upside down, the safety of the night begins around 10pm, far too late when we are restricted to living amongst people that see the day as the ‘normal’. But in just two weeks time the night will become our day and we will start winning in our battle against the extreme summer sun and XP will once again have no choice but to surrender to us, we will take back control and we will beat XP and the constant threat of skin cancer it holds over my daughter.

Will I complete any of my blog posts? Your guess is as good as mine. Maybe they will stay half written on my lap top, a reminder of what this summer has done to me as a mother, locking away my feelings, my fears, returning to school everyday with Livvy by my side and a smile on my face. Presenting a persona of a happy carefree mother when inside I have so many fears, so many unanswered questions that no other mother could ever relate to. 

Xeroderma Pigmentosum is often described as an isolating condition, and right now I couldn’t agree more not just the physical sense of not being outside with others but a greater fear that grows deep inside my stomach, the very same place where Livvy grew for 9 months, a fear for my child, my daughter, fear that before I had felt for myself I didn’t know such a fear could exist.

We will always come out fighting and stronger but every summer eats away at my very core, the autumn so far out of reach. All the positivity that I soaked up in Cyprus is running low and at times it’s hard to see an end to the relentless heat, the never ending days. My memories of cool crisp winter evenings are fading, it feels at times like we are stuck in summer and if there is anywhere I don’t want to be stuck it’s the summer!