As I sit here watching my phone, waiting for it to spring into life, ringing out its familiar sound I can’t help but feel anxious, there’s a knot in my stomach and I’m not sure what’s causing it but I know I could be sick with very little encouragement, and as for crying I’ve done enough of that already today and it’s not quite midday yet.

The main cause of my anxiety for today and the reason I’m not letting my phone leave my side is that Livvy is on her first school trip without me since diagnosis. They have travelled on a coach up the motorway to ‘Magna’, a museum in the industrial heartlands of Sheffield. Eddie went last year and enjoyed it immensely.

Normally for school trips I would drive there with Livvy in my car, which has been made safe. I would stay on the trip and be with Livvy, checking areas are safe for her, helping her with her sun cream and ensuring she doesn’t overheat from all her protective clothing.

This trip however has fallen on a day when I have already got a meeting booked in with the head teacher and the XP nurse specialist who is travelling up from London, I could quite easily move this meeting however, how I feel about school right now, I want them to take responsibility for Livvy who is a pupil within their care that is entitled to the full curriculum and inclusion. I am in a fortunate position which means I can be readily available for school trips whether to the local church or further afield such as today. Some teachers therefore automatically presume I will take care of Livvy’s needs on such occasions. No risk assessment is carried out and no checks are made before hand, it’s almost as if ‘mum is going so she’s not our responsibility’ it frustrates me beyond words.

This time I put my foot down and said I’m not going, the shock and panic that ran through her teacher’s eyes was clearly evident. I’m of the opinion that anything is possible for Livvy with a little careful planning and consideration. Her teacher asked me if the venue was safe. “I have no idea”, was my response.

Luckily the new head teacher has been very supportive and took over the risk assessment and visited the venue along with Livvy’s teacher and teaching assistant. Her teaching assistant is fantastic and took photos of all unsafe areas, she even checked every toilet cubicle in the building to ensure prior knowledge of a safe toilet.

The last part which has taken a little more planning was getting her there safely. They were travelling on a coach and we had to somehow make it safe. I, along with Livvy’s teaching assistant visited the coach company some weeks ago to see how we could go about making it safe. The coach company that school were using was a local family run business who’s children attend the same school and are more than aware of Livvy’s situation and were happy for us to cellotape big sheets of white paper up against the windows. We decided that it would be best for Livvy to sit at the back of the coach with the whole back window covered in white paper and both side windows. We closed all the curtains on the back half of the coach creating a safe pocket at the back of the coach. Livvy’s teaching assistant planned to sit at the back with her armed with the UV meter to keep a constant check on levels plus extra white paper and cello tape for emergency repair jobs.

Livvy’s teaching assistant is very positive and understands why we have such an extreme need for zero tolerance to UV light. She casts a positive spin on difficult situations and does her upmost to allow Livvy total inclusion. I know that Livvy is totally safe when in her care but it doesn’t stop that anxiety creeping up on me. When they arrived she sent a text message with an update and I have had several phone calls from Livvy to let me know she’s ok and everything is going to plan. It’s so reassuring hearing her happy and excited voice, I can tell she is relaxed and not worried about her own safety which is often in the forefront of Livvy’s mind.

I feel it’s so important that Livvy’s has these positive experiences without me by her side as I can’t be at her side for ever, as much as I would love to be, she has hot to find her own place in society and know that she can achieve anything as long as the people around her are willing to accept her needs and work with her to create the safest and most comfortable environment for her to be in.