School swimming lessons started yesterday for Livvy’s year group, every Monday morning until July. I tried to write a post about it yesterday, as some of my dear readers may have seen, although I went off topic and ended up changing it into a post about fire alarms!! I know, how did I get from swimming to fire alarms???? I have no idea, if you looked into it too much some might say I was trying to avoid writing this post.

Livvy’s school swimming lessons have pulled at my heart strings over the past few months, I’ve been waiting for them to start knowing it will be a difficult day. I found myself at school crying to Livvy’s teaching assistant just last week, it’s been a difficult time. It seems like such a small thing, and of all the things I deal with as a mother on a daily basis whilst living with a daughter with xeroderma pigmentosum it seems so insignificant, but for reasons which I will try to explain in this post school swimming lessons are proving to be very significant in our XP journey.

Livvy won’t be joining her class to the swimming baths, I have such mixed emotions about it for so many reasons.

First let me explain why she won’t be joining her class as they embark on their school swimming adventures – the pool which the school swim at isn’t safe, it’s as simple as that.

The changing area is perfectly safe with no windows and safe lighting, when I first visited with the head teacher last year we were led into the changing area first by the member of staff showing us around, I thought this is great so far, as one fear I had was if the pool was safe but the changing area wasn’t. How would she get changed? Where would she go if she needed the toilet during her lesson. These fears were put to ease until we walked around to the pool, we didn’t actually get to the pool side before I got a reading on our UV meter which was far too high to allow Livvy to walk through with just her swimming costume on. I could see by looking at the pool it wouldn’t be safe, the top windows which run the whole length of the pool were casting their light along the full length of the pool, square after square of UV light hitting the waters surface, the uv meter was getting a reading by the pool side and inevitably each square of light along the waters surface would give a higher reading. This particular autumn day was a little overcast with not a great amount of sunlight about, if we were getting a reading on an overcast day then the readings were only going to get higher and higher as the spring and summer arrives when UV levels hit their peak. And as simple as that Livvy’s school swimming lessons were halted.

It was at this point yesterday that I started writing about fire exits and being in a swimming costume and my post fell apart and became a post about an event that happened almost three years ago! How’s that for avoiding talking about the actual issue!

I think the hardest thing for me as a mother is that I’ve gone out of my way to make Livvy’s life as normal as possible, I’ve tried to twist our world on its head to ensure that Livvy doesn’t miss out on anything, and I feel for the most part we’ve achieved this well. Visiting the beach at night, going on early morning summer walks before the sun gets too unbearable with the amount of protection needed, adding grand parents on to our car insurance so if the children go out with them Livvy can remain in a safe car. We’ve fundraised and built a night garden so Livvy and Eddie can get the most out of our garden when the harmful sun has left the sky. The list continues, its no more than any other parent would do, it’s just what has been needed to keep things normal and allow Livvy to experience everything any ordinary child would.

School swimming lessons are like a rite of passage, I can remember doing them (I hated every minute of them due to my uncontrollable and irrational fear of water but I remember them) in some way they shaped me into the person I am today, facing the same fear week after week. Phil can remember his too and has his own memories.

This is the first time that something is way out of my control, I can’t change the fact that the leisure center is not safe, I can’t do anything to help Livvy achieve the end goal of having swimming lessons, it’s out of my hands I can’t stop the other children going, I can’t get the school to change pools, I can’t do anything but see the upset in Livvy’s eyes as I drop her at school with a lower year group for the morning whilst her class mates go off on the school bus to swimming.

At first I was glad that it wasn’t safe as it took away any risk of exposure to UV light, in what will be a high risk situation, but as the months have flown by the realisation that this is the first thing that XP has stopped Livvy doing, it’s become hard to deal with.

Livvy can swim and is a good little swimmer, it’s not the learning to swim that she’s missing out on, it’s the bus ride to get there, sitting at the back of the bus with her friends, getting told off for making too much noise, it’s the whole experience that she is missing out on and all I can do is watch the sadness once again creep over her as she herself holds the tears back when I ask her if she’s ok about the ‘swimming situation’.