I wrote a fortnight ago about Joshua’s uninhibited staring in a café, well this week I saw this same lack of inhibition again amongst his peers. Back in 2014, when Joshua had arrived at Great Ormond Street Hospital for his brain surgery, there was another family waiting in the cubicle opposite ours. Their daughter was due to have the same procedure as ours so we were chatting, united by terror for our children’s lives and comparing epilepsy notes. Joshua was due to be first for the surgery but they were told that GOSH was facing a staffing crisis and as they did not have sufficient nurses that day, their daughter’s surgery would be postponed and they were sent back home to York. I was horrified, knowing how much they would have built themselves up for that day, as we had done the same. I felt so guilty, but relieved, that Joshua’s surgery could proceed while hers did not, as I was not convinced that I could have persuaded Joshua’s Dad to return for a second time.
I stayed in touch with the mother and thankfully they were back two weeks later and had the hemispherectomy as planned. The teenager had a great outcome, her seizures completely stopped as a result of the operation, just as we had hoped that Joshua’s would. I learned later that she ran a group called Inspirational Kids in their city and as Joshua had respite there at the time, she allowed us to join, It is a charitable group for parents/carers to interact and share with each other. I take advantage and share information where it is relevant and they offer discounted group theatre trips which are advertised on Facebook. In the past I have taken Joshua to Shrek the Musical with this group and it was through them that we got tickets to see ‘Footloose’ on Tuesday night. Sadly as Joshua was still testing positive, he could not attend but four of us went without him and kept saying, all through the show, how much he would have loved it.
I am not sure how many seats she had been able to buy for the group , but we had top notch seats in the third row in the centre, so we had a superb view of the action. But definitely the second row was also filled with Inspirational Kids and they certainly lived up to that name. As the show progressed, they got more excited and less able to hold back, so there was some shouting out at strategic moments; “Come on Willard!” was shouted out at a quiet, poignant point and the actor looked straight at the heckler. But it was during the songs that several of the Kids really let themselves go and I found myself watching the sheer joy of a young man with Downs Syndrome and two young ladies in the row in front of us. They were totally uninhibited in their dancing and the sheer joy and enthusiasm for the performance was captivating and infectious too. It was a real highlight of the show for me , but it also reminded me of how much Joshua was missing out,