So I don’t write a blog post for a month then two come along just days apart! I put it down to us being a normal family and for 99% of the time life is much like any other family’s and very un-XP related. I’m pretty sure most of my dear readers don’t want to be hearing the mundane life that goes on behind this blog. But every now and again something happens which brings us back to reality with nowhere to hide from XP.
Last night the children went to bed quite early considering it’s the summer holidays, we decided to have a quiet evening and watch a movie. For the past week or more both the children haven’t been in bed before 11pm, enjoying the safety and freedom of the summer evenings. Eddie and Livvy were so tired, so many late nights finally catching up with them, by 7.15 Eddie was falling asleep on the sofa downstairs so asked if he could go to bed (no child of mine has ever asked to go to bed so this was a tiredness like no other). Soon after I suggested to Livvy that she went to bed too, so up she went with a teddy under one arm and a book under the other.
I didn’t want to waste the opportunity for an early night too with Phil working in London and not due home until the following night so I too took my self up to bed at 9.30 with both cats close by as I popped into the children’s room to check they were asleep and had no lights on. Eddie was fast asleep as expected, lights off, tucked up in bed in what looked like the most peaceful deep sleep. I turned to go into Livvy’s room and was met by a wide eyed Livvy! ‘Why are you not asleep.’ I asked as I crept into her room trying not to stand on all her toys strewn across the floor. She told me she was too hot and couldn’t sleep, a quick change to a thinner blanket as I kissed her goodnight once again and I made my way to my own bed with both cats in tow!
I didn’t want to fall asleep with Livvy still wide eyed so I popped the tv on as I climbed into bed watching some cookery programme I had recorded earlier. Just as predicted, 20 minutes later in crept Livvy with the blanket wrapped round her that I had not long before given her. She came in to tell me she couldn’t sleep still. I could see something was on her mind but she wouldn’t admit that there was anything. After a few minutes she returned to her own room just to then 30 minutes or so later return once again to tell me she still couldn’t sleep. This time she was tearful but still didn’t know why. I got her smiling again by feeding the cats some treats, we made a cunning plan to make a trail of treats all the way up to her bedroom so the cats would follow them and find her comfy bed at the end and fall asleep on her bed with her. (I feel the need to point out my cats are crazily obsessed with me, they follow me like baby ducklings following their mummy duck, it drives Phil crazy and even more so as they insist on sleeping by my feet all night long). I knew the cats would never settle on Livvy’s bed but it was enough to get her back to bed and she must have fallen to sleep whilst waiting for the cats to follow the trail to her bed. (Genius I know!)
This morning when Livvy came down for breakfast one of the first questions she asked was ‘when am I going to London for that thingy?’ The thingy she is referring to is surgery. She has, so far, had all her surgeries in Nottingham, however the results that we received on her birthday, which confirmed more BCCs, also confirmed one has not been fully removed, the best way forward in terms of Livvy’s treatment is to try a different type of surgery, only accessible to Livvy in London, (I endeavour to write a blog post solely on this ‘new’ type of surgery so won’t go into too much detail about it here).
I asked Livvy if this was the reason she couldn’t sleep last night, if her forthcoming surgery was worrying her. She smiled, laughed and said no. However throughout the day today we have gone over every aspect of her surgery, what will be the same, what may be different, we have even gone into detail about the surgery itself and why she has to travel to London rather than stay here in Nottingham. It’s clearly playing on her mind due to the amount of questions she has asked today. Maybe it’s just the fact that it’s to be in a different hospital that’s causing so many questions or because the surgery is different (although as far as Livvy will experience there will be no difference at all).
Today, Livvy for the first time told me that she wished she didn’t have XP. The weather was once again cool and overcast so we had taken the the opportunity to go out on a bike ride, it was during the final leg as we returned home that she made her announcement. She said it in a positive way, if there is a positive way to make such a statement! She told me that there are some good things about having XP like getting the night garden and making new friends that also have XP but then having surgery isn’t a good thing. I didn’t question her or try to convince her otherwise, what’s the point? She’s clearly feeling some anxieties about her next surgery but as always she continues to live her life without letting XP get in her way, it was her idea to go on a bike ride, she could have stayed in doors today and hid herself away from the world but instead she pulled up her gloves, slipped on her motor cycle helmet and got on her bike.
Livvy always amazes me with the ease she shows with living with xeroderma pigmentosum, she has worries and anxieties but she doesn’t allow them to alter her life. I have found that as the years have gone by and Livvy has grown older she makes it her mission to find out everything about XP and that includes surgery, she is a fountain of knowledge when it comes to surgery and skin cancer, after all knowledge is power!
2 thoughts on “Knowledge is power”
I shall direct all my questions to Livvy in the future! 😃 Once again Great blog Jodie thankyou for your insight into the world of XP x
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She is an amazing young lady with such a great attitude that inspires.
Knowledge is power and she uses it so well…. even at times to entertain x