It’s only when something is taken away from you that you realise how important it is. For Livvy, living with XP, the thing that has been taken away from her is her freedom, freedom in the most simplest form, the freedom to feel, to hear clearly, not through protection, freedom to feel rain on her skin and the freedom to feel the wind on her face.

As summer leaves us and we are having more and more autumn rain showers I see people dashing to their cars shielding their face from each and every rain drop that falls from the sky. From being Livvy’s mummy I’ve grown a new appreciation for the most simplest pleasures. Like standing out in the rain, feeling every drop on my skin, my hair soaked with rain water, clinging to my face as more rain falls from the sky above soaking every available part of my skin that’s open to the elements. I think of Livvy and how this simple pleasure is not so easily found for her, she can’t feel the drops on her face without staying up late into the night and waiting for the rain to fall with the moon watching over her.

I stepped outside into our half built night garden just the other night, it was a warm and still night, the moon was bright and I could feel the hard cold stone under my bare feet. I listened but heard nothing it was so still and silent. Something caught my ear a faint tapping, I turned to look towards the sound, it was a crane fly trying to get into the house through a closed window, attracted by the light off a lamp on the other side of the window. I could hear the buzz from his wings as he vigorously tried with all his might to get past the pane of glass. I watched him for a moment, his determination to get to the one thing we avoid ~ light. The sound was low, almost silent, a silent battle that no one else could hear.

I thought about Livvy in her mask and how she more than likely wouldn’t be able to hear the beat of his wings if she were wearing her protective mask, another freedom taken from her during day light hours, her sight is also distorted through the plastic of the mask covered with UV blocking film. At night the mask is lifted and her freedom begins, freedom to hear the beat of a wing, freedom to feel the ice cold stone under her feet, the freedom to feel the grain in a piece of wood with her bare finger tips.

Imagine for just one moment, to not feel the rain on your face, not feel the smooth metal of a car door as you pull it open and slide inside. Not feeling the rough surface of an old bench with your hand as you take a rest whilst out walking in the cold crisp autumn morning, not even feeling that cold crisp air on your face as it hits you and takes your breath away, pulling your scarf up to protect your face from the chill.

Embrace every sense, don’t miss out on a single thing, as the day it’s taken away from you for your own protection is the day you wish you could feel the rain pouring down the back of your neck. We are all guilty of rushing around and not seeing the simplest pleasures but believe me those simplest pleasures become huge hurdles when they are taken away. Livvy fills her pockets with pine cones, stones and other forest finds when we are out walking. All children collect treasures from the forest but Livvy does it so when she gets back to the safety of the car she can pull her protective gloves off and feel the rough edges and the smooth surfaces. She can hold a blade of grass between her fingers, roll it round watching it spin between her tiny fingers, such a simple pleasure that is not easily achieved.

When I take Livvy to school I hold her hand through her protective glove, I kiss her goodbye by kissing her through her mask. No physical contact made, I just cannot image not feeling the skin of another person not feeling the warmth from their hand not smelling their familiar scent as I lean into kiss them goodbye.

As a mother it’s one of the hardest things, to not kiss your child goodbye. All Livvy’s class mates line up outside in the playground waiting for their teacher to open the door and welcome them in. Livvy always wants to go straight in and not line up, at the moment her teacher allows her to, I sneak in with her and wait for her to take her mask off and I give her an actual kiss on her skin and not on her mask, I run my fingers though her perfect hair and kiss her again. Such a simply, comforting action but one when you are living with XP is made so difficult.

Don’t take anything for granted, embrace every sense and always stop to dance in the rain and let the cold air take your breath away.


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