So yesterday was the hottest day of the year so far here in the UK and I don’t think today is far behind it. Yesterday I dropped Livvy and Eddie off at school at 9am then went straight to Argos to get two new fans, I felt like a cliché stood waiting for my fans as the staff behind the waiting area couldn’t hand them out to the sweltering crowd quick enough. I felt almost embarrassed like it would be on the news later that all major shops had sold out of fans, I just kept my head down and hoped that there were no TV crews waiting outside the store filming the crazy fan purchasing people.

The queues were so big that I had no time to nip home with my two new mega fans as I had to be back at school at 10.30 to pick Livvy up. The day before had been a hot one and her teacher and key worker had found it hard to keep the classroom safe and cool. They had opted for Livvy to work in the corridor with some friends whilst the doors and windows were open in the classroom. We knew yesterday was going to be even harder to keep her safe and cool so we agreed with the head teacher that I would pick her up after transition in the morning (meeting her new teacher ready for next year). So yesterday by 10:45 we were back home with our new fans on the hottest day of the year and didn’t venture outdoors again. On the drive home Livvy asked me,

‘Mummy do you know when we change the clock thingy? You know when it’s dark at tea time? When does that happen?’

‘It’s in October Livvy, so about three months time’ I told her in my cheeriest voice I could find for not wanting to disappoint her with my answer

‘Oh!’ was all she could find in response, the disappointment clear in her voice.

This morning we woke to a cloudy but still very warm day, thunderstorms had been forecast but we are still waiting for them to appear. Livvy didn’t want to go to school, I was stuck as to what to do for the best, do I keep her home where I know I can keep her safe and cool or send her back to school. After watching her cry herself to sleep last night I was under no illusions as to the enormous impact that pulling her out of school and not spending time with her peers was having on her. I had to take Eddie to school regardless so we all got ready as though Livvy would spend the full day at school.

I said my goodbyes to Eddie and walked down the corridor to Livvys classroom. Her teacher and key worker greeted us. We all agreed that we would take it hour by hour and they would ring me if they felt the heat was too much for Livvy. I found it so hard to say goodbye to her, I kissed her head holding the tears back. Knowing how difficult each minute in this heat is for Livvy, I was stood in my new summer dress with bare arms and legs and sandals on my feet, I was hot already but my little girl stood next to me with two pairs of socks on, her trainers, two pairs of leggings and two long sleeve tops, her neck scarf and gloves. It breaks my heart to see her with so much protection on but there is no other way to get her into the school building safely. Her key worker helps Livvy to take off the layers of clothing and takes the lead on when Livvy is safe to take of both her leggings or tops and just wear her school dress. I have to rely on this one person within school to ensure that my daughter is safe but comfortable. On days like today it’s a such a big responsibility and some days I’m not ok about handing that responsibility over, I do but it leaves me in tears every time.

By 10:30 my phone was ringing, it was her key worker, Livvy was complaining that she was too hot, she had stripped her down but she was still not happy or herself. So once again off I set to pick her up early from school due to the weather.

You maybe reading this thinking why on earth has this school not got air con? It would be a simple solution that would mean that Livvy could stay in school for a full day during this heat wave. Well dear reader we have been fighting for air con for many months, but for some unknown reason the local council don’t see it as an urgent matter. The problem is they don’t watch Livvy crying herself to sleep, they don’t have to help her put two pairs of socks on whilst I slip on my sandals, they don’t sit by the phone wanting for it to ring with the latest results from surgery determining if she has more skin cancers or not. I did write in my last post that I wouldn’t mention the council but sometimes it’s hard to tell our story without telling the true struggles that we live with and right now this is one battle that I can’t see an end to. It’s disgusting that we live in a modern world in the year 2016 and the local council cannot provide a safe environment for my daughter.

Enjoy the hot days my lovely readers, I don’t begrudge you for enjoying them whilst they last but remember to keep safe, drink plenty of water and don’t forget your sun screen and we will see you on the other side when the rain starts to fall and the days are shorter and cooler.