One of the hardest parts of M’s EGID journey is that he no longer feels like a normal child and is massively aware that he stands out from the crowd. Every day is filled with numerous medicines to be taken, carefully planned meals, aches, pains and a constant awareness of needing to make sure he gets to the toilet on time. As I’ve alluded to before, M is incredibly self-conscious about his condition and spends a great deal of time worrying that he will be picked on or bullied because of his illness and restricted diet. He has a tendency to isolate himself in group situations with his peers, though he will spend hours chatting to any available adult who’s prepared to listen.
We refuse to let his chronic illness get in the way of his life any more than is necessary, so he goes to school, takes part in after-school clubs and has friends home for tea just like all his friends. However, every new thing he participates in has to be carefully assessed and I spend a lot of time talking to teachers and organisers about M, his condition and the consequences they might have to deal with. We have been lucky that we have never come across anyone who isn’t prepared to work with M’s needs and accommodate them so that he can take part.
A recent week has been a perfect example of how wonderful it can be when M can feel like part of the crowd and not stand out for being so different.
Both G and M have been attending our local Stagecoach theatre school for a number of years and enjoy performing. They were lucky enough to be part of the 25th Anniversary celebrations for Stagecoach back in March and took part in a massive performance of CATS at the Birmingham Indoor Arena. We are also avid theatre-goers and love nothing more than seeing a musical on stage. When I heard that the Youth Music Theatre Academy (YMTA) were running a drama workshop for a week this summer and that they were going to be learning and performing routines from a hit West-end musical, I knew I had to sign the 2 of them up.
G and M have been excited about this opportunity for weeks and, since the start of the summer holidays, have been counting down the days until the course began. By some strange quirk of fate, Mike and I had booked tickets to take them to see this show on tour the weekend before the workshop began, long before we even knew about the course and it was the perfect introduction to the week. What made the performance even more special was that some of the cast members were coming out to teach on the course during the week and we spent the interval musing over who the kids might get to meet.
The only grey cloud on the horizon was the difficult time M was going through with his health in the lead up to the course. By the Thursday of the week before, it was evident that he wasn’t going to find the week easy and I needed to be on site with him for those “just in case” moments that might happen. Fortunately, Jo (the course organiser) had no issue with my presence and welcomed me and M on board with an excitement that meant a lot. When you have a child who’s chronically ill, then it’s these little acts of inclusion that make all the difference.
I spent the week sitting quietly with my trusty laptop, tablet, mobile phone and books in a corner tucked away from view, armed with snacks, coffee and anything and everything M might need. The children knew I was there as a security blanket for them both, but I wasn’t an ever-present reminder that there was anything wrong, especially to those who were meeting M for the first time. He sang, danced and acted his heart out, learning new routines, perfecting familiar songs and most of all, having an amazing and fun time. We managed his medicine and his toileting with the minimum of fuss and I doubt that any of the other children really realised that there was anything different about him.
The Friday performance to the parents was fantastic and a real testament to the talents of those who had happily given of their time that week to teach the youngsters some new skills. We were amazed by how much had been achieved in such a short amount of time. My thanks have to go to Jo, Rosie, Joe, Holly and Zach, who didn’t let M’s EGID phase them, but supported and encouraged him every step of the way. He had an amazing time and can’t wait for the next workshop to be arranged! Best of all, M had a week where his health didn’t stop him from taking part and he was able to feel and be as normal as any other child who was there.