One of the longest days anyone will experience is the day your child has surgery. I hope whoever you are dear reader you never need to experience a day like it. You wake up early as you can’t sleep, wide awake at a normally unseen hour thinking of how the day will unfold. Packing a hospital bag full of snacks for when she wakes, some snacks go in as some come out, it has to be right! The most part of the day is taken out of my hands so the little things, I as a mother do have control over, have to be right. And if that means making sure the snacks are Livvy’s favourite then that’s what I shall do, so I’m sorry Soreen bar that you got replaced by Jaffa Cakes but this isn’t about you it’s about what a six year old will want to eat after waking from a general anaesthetic.

The drive to the hospital was effortless, no traffic, even the lights were working with me! Why? Why on the day I don’t want to arrive early is there no traffic on the roads, I’d rather be sat on the ring road in slow moving traffic, watching her surgery time come and go, I imagined ringing the hospital ‘I’m so sorry but the traffic is horrendous we are going to have to re-schedule her surgery’ but no, the world on this occasion is working with us and gets us to the hospital well before we planned or even needed to be there.

This time last week we were sat in the children’s day surgery unit, a place we’d been to before and know we will be back again. It never gets easier. As the doors swung open and her surgeon walked in, his familiar smile welcoming us like old friends.

He glanced a smile towards me but spoke directly to Livvy, ‘Hi Livvy, how are you?’ She ignored him!

I guess with his arrival she knew it was almost time. We talked about what he will carry out, following the instructions from the team at St. Thomas hospital. Before long I’m kissing her head as I leave her in the hands of the anaesthetist fast asleep, all be it induced.

The next hour is the longest, the hands on the clock on the wall don’t seem to be moving, could it need new batteries? I check my phone, but it just confirms that the clock on the wall is working and running to the correct time. I try to occupy my mind with anything, but no matter what I do my mind is tightly fixed on where I am and where my Daughter is. Every time the doors which lead to the operating rooms open I look over waiting for her surgeon or anaesthetist to appear and tell me she’s awake. What feels like forever eventually ends as her anaesthetist walks through the doors to tell us she’s awake but sleeping in recovery. Such a strange remark, it made me smile, to be awake but sleeping!! How very odd! But I knew what he meant, she was sleeping naturally no longer induced by the anaesthetic. Before long we were sat by her bed watching her wake up, she came around from the anaesthetic so much better than any other time, I normally know she’s awake by the primal scream she lets out as I’m sat waiting, followed by hours of confused crying. But this time she slept then woke with a smile, no tears to be seen, she bounced back so well. Maybe her body and mind are getting used to the cycle of surgery? Is that even possible? Whatever it was that made her wake so beautifully, I’m grateful to.

A week later and she’s healing well, the results are due any day, confirming skin cancer or other wise, the type of skin cancer but most importantly if all cells were successfully removed. The relief from surgery is over but it’s still in the back of my mind every minute of every day, until we have the results back I won’t be able to relax or sleep soundly at night. I watch Livvy as she sleeps, so peacefully and content, in the safety of her own bed room with a teddy under her arm. I’m envious of how well she can sleep, I guess for her it’s over, the surgery is done for now and she can get back to being a six year old where the most important thing that morning when she wakes will be what flavour yoghurt we have in the fridge. I wouldn’t want to take that away from her, she needs to be a six year old and that’s why I won’t burden her with the results when they come. For her this part is over.

I’ve compared living with Xeroderma Pigmentosum to being on a rollercoaster, ironic really as I spent my university days working at two well know theme parks for my sins. I spent most of the summer months instructing people to ‘remain seated at all times keeping arms and legs safely inside the ride’. I should remind myself of that sentence from time to time, our rollercoaster is only just beginning and I should remain seated at all times, ride it out until it’s over, I could try closing my eyes but that won’t take the pain away. I will just hold on tight and ride it out, I won’t try to get off, if I’m scared I may reach across and hold Phil’s hand but I’m in this for the full ride, I will see it to the end and I will high five the ride operative when it’s done, as I will have survived the full ride all be it a little unpleasant. Sometimes we have to experience some pain and upset to know what it feels like to be alive and know the true meaning of life. So, If you ever can’t find me just look towards our very own roller coaster of life and that’s me sat in the front seat holding on tight, too scared to let go, in it for the full ride. Our very own XP rollercoaster!


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