March has arrived like a whirlwind. It feels like it has crept up on us, appearing from nowhere. Was it not Christmas just last week? The weather is slowly getting warmer although with all this windy weather we’ve had recently it’s hard to feel the warmth of the sun behind the gales. Once the stormy weather calms down I know one day we will wake up to a warm spring day and wonder how it got so warm over night and the UV levels so high.

I’m keeping upbeat about the change in season, digging out all our Easter decorations we’ve collected over the last few years and starting to decorate the house ready for our Easter celebrations. It’s easier to get through the hard days when we have something fun to look forward to. We’ve had Easter egg hunts at night at the local park before with friends but this year we can look forward to having one at home in our night garden, hiding eggs amongst the spring flowers and all the amazing smells and textures that our garden has to offer whilst the stars twinkle and shine above us.

Livvy made me smile last week, I’m not sure why it made me smile, maybe because if I didn’t smile I would have cried. We’d not long got home from school, I was unpacking the children’s lunch boxes when Livvy asked me ‘mummy, when does winter start’ as she looked out the window into the night garden. I stopped what I was doing and looked at her, her question had also caught the ear of Eddie who also stopped what he was doing and came over with a really puzzled look on his face.

I couldn’t help but smile and laugh a little, ‘Livvy it’s the first of March, some might say the first day of spring, are you really asking me when winter starts?’

Livvy smiled and changed it to the summer, ‘I meant to say summer, when does summer start?’

I explained when all the seasons start and end give or take a few weeks as the weather changes and merges from one season to the next.

‘How many months till the summer starts?’ Livvy asked. I don’t think she really cared how long each season lasts she just wanted to know how long she had to wait until the easy season started again. Last week was a real tough week for Livvy, starting by missing school swimming lessons, and for the first time this year she had to keep her mask on to get into her karate lesson. It’s safe about ten minutes into her lesson but it’s another sign that winter is over as she needs to wear her mask more in the evening. It won’t be long until there is no safe time during Livvy’s waking day, she will wake up in the light and fall to sleep with the sun still shining and spreading UV across the sky. Time spent in our night garden will become sacred time stolen from a weekend and school holidays so that the late nights don’t have an impact on her school life.

It seems as Livvy gets older and each year passes us by this time of year gets harder and Livvy’s sadness is evident sooner. The first day of spring and she is already wishing for winter. It is heart breaking, her tears have started flowing at night again, hour after hour of sobbing but she can’t tell me why.

It just makes me more determined to not let XP beat her, I think a night time trip to the beach is due, eating fish and chips whilst fending off seagulls, watching the sun set on the sea whilst everyone leaves the beach leaving us to enjoy the cold salty water on our toes. If that doesn’t make Livvy feel alive and ready to face the long summer months then nothing will. I won’t let XP beat Livvy down, I won’t let it rule our world. I will spend the whole spring and summer showing Livvy that there is more to living with xeroderma pigmentosum than protection and hiding away from the harmful UV rays. Spring may have sprung and there is nothing we can do about it but there is something we can do about the restrictions put on us during the summer months and the sadness that arrives each year with spring.


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