Hoping for a Miracle

Christmas feels like a distant memory, we are well and truly into January, the children have returned to school and I’m left at home trying to find new homes for all the toys and games Santa was kind enough to leave for Eddie and Livvy. It’s a good reason to get into the kid’s bedrooms and have a good sort out. A fresh start for the new year.

When I picked the children up from school last week Eddie told me that they had to write their New Year resolutions. A few days earlier Eddie and I had discussed New Year resolutions and what sort of things people generally pick, I’m glad we had talked about it as I think it had given him time to think about what he may want to change or work on this year. He told me he had put down not to worry as much. It’s no great secret that Eddie worries far too much for a boy of his age, I’m glad that he is able to recognise this and wants to work on his worries.

Livvy asked me what a New Year resolution was as she listened to what Eddie had done at school, I explained, as I had done with Eddie a few days earlier. I asked her if she could think of anything after I had explained, she gazed out of the window clearly thinking of something but telling me she couldn’t think of anything.

Maybe she was thinking the same as I had, although it was a miracle I was hoping for not a New Year resolution. Talking and thinking about New Year resolutions had left me looking at things in my life and assessing each aspect for ways to improve them for the better, all the obvious things like sticking to my running, clearing out the house of all the things we no longer need or want, cooking more healthy meals, the same resolutions that were being made up and down the land. But by stepping back and evaluating my past year I knew it was more than a New Year resolution I needed, there’s nothing I can do to stop the treadmill I have found myself on, there’s nothing I can do to slow it down or make it easier. I sometimes see it in Livvy too, she’s so good at getting on with her life that she appears so care free but at night when the tears fall down her cheeks that’s when I see it in her eyes, she too doesn’t know how to stop the treadmill or how to slow things down or make things easier.

Over the last 12 months so much has happened, like starting to write this blog for one, something which I find very therapeutic, a place to come and reflect on our world. Livvy has had three lots of surgery last year, and had her first diagnosis of a melanoma, although in situ and some might say not a true melanoma for us as a family it was XP playing to a new level, upping its game when we least expected it, delivering us a blow that is still resonating in our hearts now six months later. Ive totally lost count of how many times we saw our local dermatologist in the past year, or how many emails have gone back and forth discussing surgery, new lesions and results. I think we visited St Thomas hospital in London three times in the past year to see the XP team, with our next visit at the end of January. In the past year there has been endless meetings at Livvy’s school, countless comments from strangers in the street and two parking incidents when a member of the public has tried to police our use of our blue disability badge.

Compressing the past 12 months into one paragraph doesn’t do it justice, it’s been a hard year, and at times I know I as a parent have visited some dark places where at the time I couldn’t see an end to my tears and pain, I know without a doubt XP has changed me, I’m not the same person I was two and a half years ago. Has it changed me for the better? I’m not sure and I guess we will never know as this is who I am now and there’s no going back, we can’t undo XP we can’t rewind all the surgery, we can’t stop the tears flowing down our daughters face night after night.

Our XP journey at times feels like it’s only just beginning, after two and a half years in, I still at times can’t stop the tears, mine or Livvy’s. When Livvy was a baby and I watched her sleeping this wasn’t the life that I wished for her, no New Year resolution is going to change this. I know in my heart that this is the life that Livvy has to live, and believe me she does live it well but I still pray and hope for a miracle. I know it’s never going to come and that’s ok but I still can’t stop hoping for a miracle.


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