New academic year

The children have been back at school for a week now after the summer break, both seem to be settling in as well as can be expected after having six long weeks at home. I don’t really like the start of a new academic year, it feels like so much change, which if not monitored closely could lead to Livvy being unnecessarily exposed to UV light.

Don’t get me wrong nothing has happened so far to indicate that Livvy has been placed in any danger, I think it’s more of a trust issue. We spend a year getting used to the staff that are working closely to Livvy then in a blink of an eye everything changes and we are left building new relationships with different staff members. Trust is so important and at the centre of Livvys care not only for us as parents but for Livvy too, for her to relax and thrive in school she has got to trust the adults around her, that they are not going to open windows and doors in her presences, that they are going to act on any potential unsafe situation within school.

Last year an unsafe UV light pen was brought into school by a child, the child was simply asked to put it into his tray. This put Livvy on edge for the rest of the day, which went unnoticed by the teacher. How could Livvy concentrate knowing there was a light that could cause total devastation to her already badly damaged skin within easy reach of every child in that room? Its these little seemingly small incidents that put me as a mother on edge.

I must entrust my daughters very existence into the hands of mere strangers every morning, it’s tough, really tough but I have to do it. It feels just a little harder this year as we have a new head teacher, by all accounts he is very good at what he does, and maybe so, as far as a head teacher goes but I want someone to fight Livvys corner for her, to allow her all the same privileges as her peers to treat her like she is worth going an extra mile for. I think it’s fair to say this hasn’t always been the case within school and although I’ve tried to keep my views and opinions of school away from my blog, it has inevitably crept in from time to time.

I guess I just need a little reassurance, a nod to say ‘I’ve got this’ I feel like we as a family have been let down so much over recent years with regards to school that it’s hard to place all my trust in someone new no matter what it may say on their CV. I know I come across to a lot of staff as a little neurotic, I don’t really care to be honest as my job as Livvys mother is to protect her and if by doing so I come across as crazy then that’s a small price I have to pay.

So here we are at the end of the first week of a new academic year, and so far, so good. Eddie and Livvy have both settled back into the school routine with ease, I would love to say that my own anxieties have lessened as the days have passed by but I think that’s going to take a little longer than a week. With another surgery looming my anxieties are creeping in regardless of the new academic year, bad dreams starting to plague my sleeping subconscious, and we don’t as yet have a surgery date, some days I don’t know how I will make it to the end of the week with so little sleep.

Despite my lack of sleep and higher levels of apprehension I do know that I’m ready to stand up for Livvy and be her voice that she sometimes needs within school, hopefully I won’t need to stand for Livvy quite as often as last year but I’m ready with my soap box when needed. Neurotic, anxious, tired, apprehensive may all describe me at the moment but what comes above all that is my love for my children and my drive to ensure that Livvy is protected from not just UV light but everything that comes with living with Xeroderma Pigmentosum as she does. I hope that Livvys new teacher as well as the head teacher are ready for me as we progress with full force into this academic year.


2 thoughts on “New academic year

  1. You’re not neurotic. You are passionate. Have you considered an, “Idiots Guide”, for the school, headmaster, teacher and Livvy’s classmates’ parents?


    • Hi Tony, thank you for your comment, believe me we have written the most basic care plans to be used within school that a 5 year old would be able to follow. I have found that over the years some people just don’t get the importance of our extreme avoidance to UV light, it’s almost like it’s just so unimaginable that people struggle to comprehend it. I guess it’s something that Livvy will have to face throughout her life, another part of living with such a rare and unusual condition


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