We were so proud last Saturday morning when we found out that Livvy got a distinction in her recent ballet exam and a merit in her tap exam. When Livvy got diagnosed, we soon realised what we had to do to keep her safe. The realisation was upsetting and made my heart sink when we came to the conclusion that she would, more than likely, have to give up her clubs.
She attends a dance school, a karate school and also has swimming lessons weekly. Luckily where we do our swimming lessons is safe! The changing area and most of the pool! Her instructors are brilliant and her class now swims on the near side of the pool away from the windows so that on high UV days when UV does get through the windows Livvy can remain safe.
Karate was a little more tricky as there are some unavoidable windows, however we have still managed to keep Livvy going, in the summer months she keeps her protective gloves on and wears a cap to give protection to her face along with plenty of factor 50 sun screen, she also wears mat shoes rather than bare feet like her class mates. Her instructors understand the need for Livvy to wear her gloves and cap and support her in doing so, allowing her to continue with her martial arts. She really enjoys karate and gets a lot of confidence from her classes, we felt it was important that she carried on attending despite the potential for exposure.
The final club was her dance school, it is a wonderful family run business with a large, beautiful dance hall, and a waiting area where we can get a coffee and a cake from the cafe. I knew it would be impossible to keep Livvy going, across the whole side of the hall are windows that the sun pours in through, in which the girls and boys practice their techniques with the sun shining down on them. How could I keep her going in what would be a highly dangerous environment for her?
The first Saturday arrived in July, after we had started to emerge from the darkness of diagnosis. Livvy had already had two lots of surgery to remove skin cancers from her face at this time, we started to move on with life and got her back into her clubs, for some normality, but we hit a wall when it came to her dance lessons. Livvy was so desperate to go and see her friends, there is only one girl that attends the same school as her, so she had many friends that she only saw at dancing. She was keen to see them after having time away.
I explained that the only way she could go was by wearing leggings and a long sleeve top, she would also have to keep her gloves on and wear a big floppy hat so she could remain in the shade. She was so happy to go that she agreed to wear all the protection needed. She looked like anything but a dancer. It was upsetting to see her smile starting to fade as the realisation hit her that to dance with her friends she had to wear so much protection. It was hard. Her friends accepted her and welcomed her back with open arms.
She had been attending the school for over a year at that time and her dance teachers knew her and us as a family well. They knew how important it was for Livvy’s own self esteem, to continue dancing. It was heart breaking for all of us, it brought it home how hard life was going to be from now on. They closed the blinds and got to work doing what they do best.
Her dance teacher had a word with me after the lesson with a tear in her eye. ‘We will do anything to help Livvy, anything at all’ it was a hard conversation for me to have as in those early days it was hard talking about XP and the world we had entered. Her dance teacher asked me what we had done at home to protect Livvy, I told her about the UV film on the windows which reduced almost all UV radiation from entering our home.
‘Can you get us some?’ She asked.
Her love and warmth was overwhelming and I tried my hardest to keep the tears back.
A few days later Phil met her husband at the school and they got to work measuring up the windows in the dance hall and a week later it was safe.
It never entered my head that they would be willing to make such a big change for one pupil that is only there for an hour on a Saturday morning. I think for them seeing Livvy in all her protection was hard, to teach a group of young girls the pleasure of dance when one is covered from head to toe in protection from the sun, with her sadness starting to seep out. I’m so grateful for their kindness.
We hit another stumbling block when it came to their yearly production that they perform over two nights at the local theatre. As the time got near I was starting to get a little bit on edge, if it wasn’t safe on stage then how could I tell Livvy that she couldn’t perform after spending months rehearsing with her friends?
I think her dance teacher could start to see my worry, ‘don’t worry’ she said ‘no matter what, Livvy will be on that stage and she will dance, if that means we have to get her a matching mask and visor then we will, nothing is stopping her from being on that stage!’
We arranged to go to the theatre together to check all the lights, as it was important that it was also safe back stage too. We explained the problem to the ‘lighting guy’ who was very kind and went through all the lights on stage to test them, they had a new LED system which was perfect for us. On the running order next to Livvy’s performances with big letters were the words ‘use only LED lights’. Everyone involved knew why and the importance of doing so.
Show time came round and she danced away with her friends, she looked just the same as the other girls, all moving in time, their hair tied up in a bun to show all their happy faces. I was so proud and happy that my girl could be like the others, her smile spoke volumes compared with a few months earlier when her sadness was starting to show.
I do believe it has showed Livvy that she can become anything she wishes with just a little bit of help and support from those around her. I’m not kidding myself that life is going to be hard and we are going to hit many more hurdles, but every now and again we see a glimpse of the future and it’s not as dark as we first imagined. Anything is possible.