Halloween, one of Livvy’s favourite nights of the year, not only because it means eating her own body weight in sweets but its one night that she can fully embrace. So many dates in our calendar come and go every year where it is impossible for Livvy to participate with so much protection, it makes taking part and enjoying the event sometimes near impossible. Sports day, summer fates, Easter egg hunts and teddy bear’s picnics all either not participated by Livvy or with her looking on through her protective visor.

With the clocks having changed at the weekend it has brought much more freedom for Livvy, playing out as early as 5pm with no protection from harmful UV light. Her mood always lifts this time of year, she becomes a normal member of society after dark with her disability well and truly hidden. Halloween is the one night that she can disappear amongst all the other children dressed up in their costumes, blend in with her skin exposed to the elements. One night where being different is accepted, one night that no one looks at you twice because your skin doesn’t match the person next to you. We all want somewhere we can belong and be accepted for who we are and for Livvy Halloween might just give her that acceptance. Normally her friends have to be home when it gets dark but not tonight, tonight the magic starts when it gets dark as it does for Livvy every night.

We had a busy weekend carving pumpkins in anticipation for tonight. They are all lined up by the front door, covered in plastic spiders ready to spook any one that comes knocking on our door, a bowl of sweets sits in our hallway (its been refilled at least twice as the children keep taking them!) Livvy and Eddie’s costumes hang upstairs ready for when they get home from school.

Livvy has a difficult surgery in just 20 days and her anxiety surrounding it has started to become evident. My nightmares are also back with vengeance, I woke in the night in a cold sweat, too afraid to go to the bathroom the silence screaming down on me, the darkness engulfing me as I recalled the horror of my nightmare. My anxiety taking over my sleeping self as it does leading up to every surgery that Livvy has. When I woke this morning my head was aching as was my whole body from a night of constant tossing and turning unable to settle back to sleep after my anxiety had taken hold of my sleeping body.

The fun of Halloween is a well needed distraction from next months difficult surgery.


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