Having a daughter with such an extremely rare condition often leaves us as a family trying to find our own path in the world with no blue print on how it should be done. Livvy, as far as I’m aware, is the only XP person to ever live within the county of Nottinghamshire in the UK, therefore everything we do almost sets the way for any other families that may find themselves trying to negotiate school whilst living with this unique condition. I’m referring back to the swimming situation which I wrote a post about recently updating my dear readers on progress (which is little if any) we are still no further on 4 weeks after writing my update post (sorry if my dear readers got excited thinking we had finally found a solution with the local council).

Due to the uniqueness of Livvy’s condition combined with its rareness I sometimes find myself questioning decisions I make as a mother. Recently swimming has made me question myself over and over again.

Firstly should I be fighting so hard to get Livvy included in school swimming sessions? Although I often find myself questioning this I think its clear to see that Livvy is entitled to swim along side her peers, the local authority have a duty to offer Livvy swimming as part of the national curriculum. Although entitlement is a valid point for inclusion I think when you start to consider the alternatives that’s where my drive to include Livvy comes from. Last year I watched her smile fade a little more every week as she watched her friends go off for their weekly session, returning before lunch full of excitement, stories from the pool side and wet hair. Livvy had to not only go to a different class but a lower key stage, the effect on Livvy’s sense of self and worth were knocked heavily during this time.

I also think if Livvy doesn’t see us fighting for her rights at this young age then what does that teach her for the future? She’s 8 years old, we are not naive enough to think that things will get easier, we are well aware of the restrictions her conditions may have on her future, if the first thing we let slip by is something as simple as swimming lessons then what does the future hold for Livvy?

As I mentioned at the start of this post Livvy is, as far as we are aware, the only XP child to pass through this local authority’s doors, I would hate to think that in the future if another family finds themselves having these same conversations in the years to come with the same people within the council that they can say ‘Livvy attended swimming sessions so it is possible!’ I don’t want our unwillingness to fight for our daughter to have a negative impact for another child. I do feel we are fighting for all children with XP not just our own daughter, we want to set the bar high so other local authorities around the UK can look at what we have achieved for Livvy and think that their XP child is worth fighting for and is entitled to the same as all their peers.

The second thing that I keep coming back to, as I mentioned 4 weeks ago in my update on the swimming situation is a full swimsuit. It was suggested to us that Livvy could wear a full swimming suit whilst attending school swimming. We, along with the head teacher point blank refused to even discuss this as an option. However having returned from our holiday to Cyprus where Livvy spent many hours outdoors swimming in something similar to what was suggested it has made me question myself.

Although Livvy could wear a wet suit, boots, gloves, hood and mask during swimming sessions which would include her in the sense that she was there at the same time as her peers I really truly think this would have an even worse detrimental effect on Livvy than staying behind each week at school. What we observed on holiday when Livvy wore full UV protection in the pool, was a timid, uncomfortable, unconfident child. Yes she did wear her full protection with no upset or argument but she was in the safe surroundings of her family. She couldn’t hear well, her sight was reduced dramatically but the most significant difference was the restriction on her movement. When I think back to our holiday, Livvy did not once swim with her full protection on, she bobbed about either holding onto an inflatable or on Eddies back. She never put her shoulders under the water and was fearful for her mask falling off if she moved too suddenly.

Don’t get me wrong she fully embraced the situation she was in and enjoyed every moment of it for what it was. However as soon as the sun set, when the wet suit along with her hood, boots, gloves and mask came off she was like a different child. Her voice could be heard as she jumped in from the side no longer fearful of her protection failing her. She challenged herself to swim the length of the pool underwater and went through all the different swimming techniques she knew. It was a pleasure to see the fear fall away from her and gain the freedom which allowed her to swim to the best of her ability. If, as the council suggested, Livvy attended swimming wearing full protection not only would Livvy feel embarrassed in front of her peers but I can guarantee she would be placed in the lowest group along side the none swimmers, which is perfectly acceptable if this was a true representation of her ability however once all her protection is pulled away she is confident in the water and is able to swim.

So although I have found myself questioning many things, with no solutions to the swimming situation on the horizon I am not about to back down on any front. I am here for the long haul, if anything our recent holiday has reignited my drive to fight for my daughter, I am not about to sit back and let the council win. Although it shouldn’t be about winning or losing, it often feels that way but what I have to lose is much more than the council, so I hope they understand why I am not backing down. I will continue to hold my head up high as I battle on to be the best mother Livvy could have by fighting her corner, even if she is oblivious to what goes on whilst she continues to be the happy 8 year old that she is.