It was sports day today, a day that I don’t look forward to each year since we started living with XP.

I woke up this morning and looked out my window to a cooler, slightly overcast day. I felt like punching the air like a teenager from a corny movie. For once the world was on our side and playing to our rules.

A cooler day meant that Livvy could not only take part but if she wished to, also stay outside to watch her friends for longer. I remember back to last years sports day, it was hotter than hot, the sun was streaming down from above with not one cloud in its way. Of course this would have meant the UV levels would have been crazy high but the heat is our biggest problem at times due to Livvy’s protection. Last year she completed her two races and then went back into the safety of her classroom, she had no interest in staying out side in the heat for longer than she needed to.

This year was a little better due to the weather, she completed her two races then went back to join her team, she sat on the edge not really integrated fully in the cheering. Wearing her face visor causes her to get hot but also if you imagine putting a plastic box on your head and shouting the acoustics are all wrong, the sound just travels round inside and struggles to escape from the box and achieves nothing but to deafen yourself.

With each breathe that Livvy lets out it causes her visor to mist up resulting in her vision being reduced when she has already lost her peripheral vision due to the shape and size of the mask. If you take all these small things into account it is far from easy or enjoyable being outside.

After a short time watching her peers race Livvy had had enough and pulled on the arm of her key worker to go back inside and off they went to the sanctity of her classroom. During the break I popped in with an ice lolly for Livvy and to see how she was. Livvy had taken all her clothes off and was in her pants and socks in front of the fan blowing cool air on her. I laughed as I saw her,

‘why on earth have you taken all your clothes of?’ I quizzed her,

‘I’m too hot!’ was her reply.

‘Are you sure? It’s not that hot out there today’

‘I am hot!’

And who am I to argue with her? She had two pairs of leggings on, two long sleeve tops, long sleeve gloves, a neck scarf and of course her mask.

No one really knows what it must feel like to wear so much protection, maybe she was too hot or maybe she just wanted to feel free from the restrictions that a life time of protection brings. She danced away sucking her ice lolly in front of the fan without a care in the world. She may not have been able to fully embrace sports day with all her peers but she did as much as she felt comfortable with and that’s all I can ask of her. Sports day will always be a challenging day for Livvy but as always she won’t let XP dictate what she can and can’t do. She may not have the freedom of other children but Livvy always finds a way to make her own freedom from the restriction put on her.