Today I went back and reread my first blog posts from January when I started this crazy journey of sharing our new XP way of living with all that wish to read. I felt that those first posts were full of hope and happiness, blogging about the small but significant parts of our days like a comment from Livvy that allows me to see into her childlike way of thinking.
As I carried on reading the posts I felt a sadness starting to wash over me, at some point my posts had become caped in a sadness, a grief for a life that we should have had and not one that involves XP in anyway. I’m not sure if you, as my readers, feel it but I guess I know what my mood was when I wrote the posts. I have found that over time my blog has become a place I turn to to express my sadness, like a form of therapy I guess, I get it all off my chest by writing about it and sharing it with the rest of the world.
I don’t want you as my readers to think that it is all doom and gloom living with this condition as we are a normal happy family with one big difference, we live for the night. So this, my dear readers, is my word to you that I will not only use this blog as a way of helping me cope with the hard days that come with our way of living but to also share with you the happy days that come with living for the night. I promise to show you the brighter side of our world in equal parts to the dark days of surgery and phone calls confirming more cancers. Over the past two years, as parents we have evolved with the diagnosis of XP and we allow some crazy days and nights to happen that we possibly wouldn’t have done before XP became part of us. We have learnt to live for the moment and enjoy the nights in the best possible ways.
Im going to start by telling you about our drive to school this morning;
We got into our car ready for the school run, it was so cold, a real crisp autumn morning with a mist in the distance, as we drove by the forest we could only see the tops of the pine trees in an autumn haze, it was almost like a perfect postcard picture with the sun fighting to be seen through the haze, the trees looked like shadows in the mist.
Eddie showed his appreciation for the view by announcing that he loves Autumn, ‘I just love how everything is changing and starting to go brown and yellow, it’s amazing how the mist just sits there……’
Autumn is a great season for us as it’s the time of the year when things do start to get easier in terms of living with XP. I asked Livvy which was her favourite season knowing it would be Autumn or Winter for obvious XP reasons.
As always she had an answer ready and waiting for me, she didn’t need to think about it she just simply told us her true and honest answer, ‘I love Winter because that’s when Christmas is and we get loads of presents!’
I asked if she loved winter because it’s darker earlier so she can go out more, ‘well yes I do like that too but I also like presents and Christmas!’
Ok Livvy don’t hold back on your love for presents!
We can sometimes place too much importance on XP and the sun, don’t get me wrong Livvy has had some tough days and nights, tears full of fear, questions with unknown answers, but it fills me full of love and respect for her when amongst all these uncertainties she shows that she is a normal 7 year old and in the first week in October as the first leaves start to fall from the trees she has her eyes on Christmas, is that not what all 7 year olds should be doing? Not worrying about what time the sun will set tonight. XP is a constant battle but every now and again it slips to the back of our minds and as Livvy showed this morning there are more important things to be thinking about on the horizon. Autumn is here and winter is not far behind, fun times are ahead.