Back in April we had a letter home from school.
A CBeebies production team were coming into school to do some auditions for a new language-based TV show. It was essentially just games and dancing and fun and you were given the option to opt your child out.
Now while I know a lot of children will lay claim to this crown, Mojo has to be in the running for Cbeebies biggest fan. From (Saint) Justin, to ITNG to Topsy and Tim via Peter Rabbit & Duggee, it has been on in the background at our house for 6 solid years. The ballets, pantomimes, Proms and even the Shakespeare are a big deal and we have a planner full of them which can be deployed to diffuse any meltdown or alleviate any hospital waiting room angst.
Given that it was a programme specifically about language and communication I didn’t imagine that Mojo, being non-verbal, would have been who they were looking for but I knew she would have fun at the audition and even to say she’d auditioned was pretty cool.
I was more than a little stunned therefore when the following week I had a call from the programme saying they loved Mojo, they thought she lit up the room and she had spent the whole audition laughing and dancing which was exactly what they wanted! She was in, could we come and do a day of filming? Well, you can imagine the excitement.
Mojo was excited but I was really aware that playing in the school hall with all her friends and amazing school team was a very different proposition to performing on demand in an unfamiliar setting. As the filming day approached I found myself getting anxious (really?that’s not like me, right?) about whether or not she would enjoy it or whether I was setting her up for a stressful experience. The problem with going in somewhere blind is that I can’t prepare her the way I do with other experiences.
As is our way I left prep until the last minute including leaving it until the night before filming to get her hair cut. Now I’ve had some bad haircuts in my time but the one that Mojo had on that Tuesday night will remain with me for years! I swear I used the words ‘trim’ and ‘bob’ neither of which were evident in the resulting shambles. There was no way of getting around it, I had managed to get Mojo her very first bona fide hair disaster the day before her TV debut!! She was quite entertained by her pixie cut I, on the other hand, was traumatised.
There was nothing to be done so Mojo & I and what remained of her hair arrived at the studios in Battersea for filming.
The team were lovely, welcoming, warm and all of them had obviously heeded all my advice on how to keep Mojo happy. We were settled into a waiting room with drinks, snacks and toys and a few other families. Mojo was especially taken with one little boy, he played with her in a completely inclusive way seemingly unconcerned by her non-verbal communication and wheelchair. He wheeled her around the room at speed, much to her delight and I watched on as she made her first non-engineered friendship. It was pretty awesome.
Then the filming began. The director explained what they wanted Mojo to do and I confess my heart sank. They wanted her to pick up a book and open it on her knee. Now technically she might be able to do this with support, but alone with a room of people watching her….nope. We tried for a while, she was keen and understood what needed to be done but her compulsion to put things in her mouth overwhelms even the strongest of wills to complete a task. I worked hard to cajole her and talk her through what she needed to do. They even cleared the room at one point and just left Mojo & I, a rolling camera and a director hidden behind her laptop but it wasn’t to be.
The group filming was easier and Mojo danced, laughed and smiled along following the instructions to look at a balloon which was to be replaced by an animated character in post-production. I threw myself around behind the cameras desperate to keep her engaged and smiling. It was absolutely boiling with all the lighting so it was a little like doing a fully clothed Bikram yoga session.
I was blown away by how much she enjoyed her day and how well she was able to interact with the unfamiliar, neuro-typical children. They even managed to film the book opening scene thanks to the blossoming friendship with the little boy she had taken a shine to. They tried a take (or 9) with him handing her the book to open, which worked beautifully.
The icing on the cake of that particular friendship was at the end of the day when it transpired that the little boy had spent the whole day thinking Mojo was a boy too. Thank you, once again, over-zealous hairdresser! His mum kept correcting him, but in the end we just left them to it, they were both perfectly happy in their misunderstanding.
All in all it was a fantastic experience and I was so incredibly proud of her. My amazing girl.
I find it hard to explain why doing something like this means so much to me without sounding really dark, but for me that fact that she has featured in a programme that will air and probably be repeated for years is such a concrete experience, such a tangible presence in the world such a memory to cherish that no matter what the future holds (and I am always thinking of the future and the label of ‘life-limiting condition’) we will always have this as one of Mojo’s amazing adventures, and that is pretty awesome.