We were driving home on Saturday when Livvy said to me, ‘mummy can you remember when we change the clocks and it’s dark at tea time?’
My heart sank knowing that she had got mixed up with the clocks changing, I replied ‘I can remember, but the clocks are changing the other way this time my darling which means it will be light still at bed time’ I looked at her in my mirror, her happy smile disappeared.
‘Oh yes’ she replied ‘I forgot’
The realisation hit her. Today was the last day that she can be free from the restrictions that XP put on her during normal waking hours. It stopped being safe in the morning many weeks ago but we still had an hour or so before bed time. We didn’t always go out but it was reassuring just knowing that we could just walk out the door and be free. If Jack our dog wanted to go out Livvy would jump up and go open the door for him just because it was the only time of the day that she could. You could hear her saying to him ‘it’s ok Jack I will open the door for you’ these small things ceased yesterday until the Autumn returns.
I told her it will be ok, and that we can stay up late at the weekends so she can still go outside without all her gear. She gave me a nod as she looked out the window watching the world whirl by.
And so we found ourselves on Easter Sunday eating chocolate for breakfast an hour later than we should be. In a way it’s a blessing that it’s fallen over the Easter weekend, it takes the emphasis away from the clocks changing and all our focus is on eating eggs and playing games in a den freshly made by Eddie and Livvy on Easter morning. Hunting for mini eggs around the house, trying to find them before Jack the dog sniffs them out! We’ve made it through the clocks changing before and we will do it again.
This morning on bank holiday Monday I woke to the sound of rain and wind violently thrashing against the house, I thought how ironic that most of the UK will wake up to the sound of rain and have a good moan about a typical wet bank holiday. It made me smile that a wet and cooler bank holiday is almost perfect for us. As much as living with xeroderma pigmentosum is a real emotional and challenging roller coaster we will keep looking for the positive things in our world and an ironic wet bank holiday is where I’m finding something to smile about this morning. Happy Easter.