What did she think we were playing? Ice hockey?



Today Livvy played tag rugby for her school in a tournament against other local schools. I think it’s fair to say she’s been very excited about it over the last few weeks. She was up bright and early this morning, fed all our animals and had started on the packed lunches before I’d even ventured downstairs.

Having XP has often meant that Livvy has been left out when it comes to outdoor sports. Sometimes its through her own choosing as she just can’t handle the heat during any physical activity whilst wearing her full UV protection, or she is often over looked due to her condition and not even considered.

So, to be picked by the sports coach to be a member of the tag rugby team was not only a honour for Livvy but also made her feel like a true member of the school, included to the full and not sat by watching her class mates likes so many times before.

I was chatting to the sports coach as we watched the first game in the tournament, he asked me if Livvy would be ok and would cope playing all games, as the whole tournament was to be held out side on the rugby field of a local secondary school. He told me that she was a fantastic little player with some speed in her legs. He told me she was the first girls name on his list that he had wanted to bring to the tournament and so was very pleased that she had been able to come. The time of year invariably helped, if it had been a summers day then I doubt that Livvy would have tolerated the heat and been able to play to her full potential, but it was a perfect autumns day with cool crisp air and although the sun was out it wasn’t too hot nor were the UV levels too high.

Livvys team played so well, getting through to the semi finals, all the children were so proud. We unfortunately didn’t win the semi final but it was a close game. Then came the third place play off, our team played well drawing three all as the bell rung out signifying the end of the game. As it was a play off it then became sudden death, who ever got the next try would win the game and get third place in the whole tournament. Livvy caught the ball, she was in the middle of the pitch, the try line appeared too far away for her to get to, but she ran and she ran clutching the ball, the sports coach was screaming her name ‘run Livvy you can make it!’ And she did! The other team couldn’t catch her and she made it to the try line and got the final point of the game securing her teams third place result. The sports coach turned to me and said ‘I told you she could run’!

Livvy walked over to us as all her team mates gave her a high five, her visor was steaming up from her breath but her smile was visible for all to see, an amazing achievement.

The only disappointing thing that happened during the tournament was when we arrived at the school. I had driven there as my car is UV safe for Livvy to travel in, a teacher had also driven their own car with three children, with the rest of the children following in a mini bus. The teacher and I parked up and walked into the main reception with the children that we had taken, deciding it was better to wait inside to give Livvy a moments breather whilst waiting for the rest of our group to arrive knowing that she had a few hours of being outside. As the teacher and I walked in I made eye contact with the lady on reception who therefore addressed me rather than the teacher, I told her that we were there for the tag rugby tournament but we were just waiting for the rest of our group before signing in. The lady was fine about this but not so fine about Livvys appearance. ‘Are you the goalie?’ She asked Livvy in a packed reception area, in a tone that made most heads turn and look. I told her that she cannot be exposed to UV light, thinking that would be enough of an explanation especially as we were in a school. But no, this was not enough of an explanation as she continued ‘Can you even see where you are going with ‘that’ on?’

I don’t like to mention cancer in front of Livvys peers or Livvy for that matter as its such a taboo word and means different things to different people depending on their own experience but she was not backing down in her barrage of inappropriate questions to Livvy so I hit her with it, ‘she actually has skin cancer!’

‘Oh….. well I’m sure she will get better’

‘no she wont, her condition is genetic’

The rest of our group had joined us at this point as I rolled my eyes in a discreet manner to Livvy’s teaching assistant. We signed in and made our way to the rugby field, I purposefully didn’t look towards the woman again. She obviously had no manners or discretion from her barrage of questions, she also clearly didn’t think I was Livvy’s mother but possibly a member of staff as I had taken the lead in introducing us as we walked in (old habits die hard after years of working in the education sector myself before having my own children) which I think in her own head made her line of questioning ok, like a bully on the playground not being brave enough to insult whilst a teacher is in ear shot, but she felt brave picking out Livvy in front of other children and staff from both her own school and ours, I’m not sure if she would have reacted in the same manner if I had my mother hat on for all to see.

What makes me laugh about this whole situation the most is that the tournament was against a number of other local schools therefore there were many children there who did not know Livvy or her condition. Not one of them looked at Livvy oddly, not one questioned her, not one was rude to her, they all took on Livvy during the matches not giving her any advantages due to her protection. Quite often its the adults within society that need to take a step back and look at the person stood in front of them and not the mask they wear.

When we got home Livvy and I were talking about the tournament, she had me in fits of laughter as we talked about this woman asking if she was the goalie. ‘There isn’t even a goalie in tag rugby’ she exclaimed with the most puzzled look on her face. ‘What did she think we were playing? Ice hockey?’


6 thoughts on “What did she think we were playing? Ice hockey?

  1. Also…before I read this I was admiring her hat/shield. Did you make that or is it a custom item? I think TitaniumAmy wouldn’t mind that so much. She doesn’t like the distortion the typical plastic fabric gives.

    Liked by 1 person

    • It’s a welders mask that we have altered to suit our needs, we have put the same UV film that we have on our windows on the visor then put Velcro around to attach the hood, my mum is very clever and makes the hoods for Livvy. Livvy has never got on with the flexible film as she says she can’t see anything through it but these adapted welders masks seem to do the trick

      Liked by 1 person

    • Without the film it does let the UV through but the window film works well, we have been using these types of face visors for the past three years, we have found some sit too close to her face whereas others have a curve in them so it’s not too close, a little bit of trial and error to find the best one


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