Every eventuality

I started writing a post about school swimming lessons, but I have gone off topic totally! I was at the point were I got to how Livvy would evacuate the building if she was dressed in a swimming costume. It took me back to a place shortly after diagnosis, a place where not only us as parents but also the staff at school were learning how to best look after Livvy and keep her safe from UV light. I’ve cut out this story and made it into its own post, (school swimming will have to wait – ironic as that is what is happening with Livvy’s school swimming lessons) so apologies for starting at the pool side and ending up in the school hall in the middle of a fire alarm……..

All children could get out the pool and make their way out of the building via the fire exit which is located at the pool side. What would Livvy do if she only had her swimming costume on? No protection on her feet, her bare arms, her bare legs. What if there was no time to get her covered up, what if her mask wasn’t close by. These fears have grown from Livvy’s first fire drill that she experienced shortly after diagnosis at the age of 5.

Livvy was in the school hall during a PE lesson when the fire alarm went off, as far as everyone in the building knew it wasn’t a drill. The children were doing PE in bare feet, as the bell rung out the children grabbed their shoes as they made their way to the fire exit, the door swung open as children were directed to the playground, the children went out one after another slipping shoes on as they approached the door, even putting shoes on as they left the building as the staff didn’t know if it was a drill and the main priority was to evacuate safely and quickly.

From what I understand, Livvy couldn’t find her shoes, she didn’t have a coat with her for protection it was left in her classroom, I’m not sure if she had her mask and gloves with her but I have a feeling they were also left in her classroom, she was 5 years old and fully aware of the dangers of going outside unprotected but also of staying inside a potentially burning building.

Her teacher was in the staff room planning for the week ahead whilst another member of staff took the PE session. On hearing the fire alarm her teacher left the staff room and headed to Livvy also not knowing if it was a drill. Running down the corridor past fire exits heading to the hall. Finding Livvy very distressed crying with fright, she threw her coat over a terrified 5 year old Livvy to protected her as much as she could from UV light as they made their way to the fire exit, as they approached the door her teacher happened to glance down at Livvy’s feet and realised she had no shoes on. During the panic of getting the children out (most probably bare foot) Livvy’s protection had been forgotten, left to find her own shoes in a pile of shoes that all looked the same.

I’m grateful to the teacher that made a B-line for Livvy, possibly putting her self at risk if it had been an actual fire. The teacher didn’t take Livvy outside, she made a judgment to stay in the hall by the fire exit with Livvy until she got confirmation that there wasn’t a fire, informing the head teacher she was staying behind with Livvy, word had made its way to the office which is located by the hall that although it wasn’t a drill no fire had been located and it was almost certainly a false alarm. With this knowledge the two of them waited in the hall by the fire exit until it was 100% confirmed it was a false alarm and they returned to their class room, with Livvy terrified and crying.

To say Livvy was scared is an understatement, I cannot imagine what she was thinking. She had already at this time had more than one round of surgery to remove skin cancer from her face and knew what going outside meant but also what staying inside a building where the fire alarm is ringing out meant, it goes against everything that is drilled into you from a young age – drop everything, leave bags behind and head to the nearest fire exit.

The nights that followed the fire alarm were long, with nightmares from Livvy, crying out in her sleep, not wanting me to leave her at night, she’d ask me ‘what if our smoke alarm goes off’ I’d try to comfort her by telling her ‘its night time Livvy, we will just go out the house as we are as we don’t need any protection until the morning’. It was at a time when Livvy questioned her own mortality and this incident, although it lasted no more than a few minutes, stayed with Livvy for a long time.

We learnt a lot from the fire alarm that day, she no longer does PE in bare feet, she also wears a long sleeve top and jogger bottoms rather than shorts. All she needs to do is put her mask and gloves on (which she’s got down to a fine art and can do in a matter of seconds) her mask and gloves along with her UV bag travel around the school with her (her UV bag, as we call it, is full of spare gloves, hats, UV safe tops, UV safe bottoms and sun cream) so at any given time she can be made fully safe if any of her clothing fails her. She now has a dedicated teaching assistant who is responsible for ensuring Livvy is safe to leave the building at any given time including fire drills/alarms.

At the time of the false fire alarm no one had sole responsibility of Livvy’s safety, if her teacher hadn’t headed to her I’m not sure what would have happened, would she have followed the other children out the door unprotected? I’m not sure that she could walk out a door unprotected even at such a young age and so soon after diagnosis, I imagine it would be like a sky diver without a parachute not wanting to jump out of a plane, holding onto the side of the plane not even daring to look down at the ground below.

It was a steep learning curve for all involved, I’m pleased to say the following planned fire drills went by very smoothly, the head teacher felt it was important that the school had a planned fire drill shortly after to show Livvy how she can be evacuated quickly and safely. Her teacher was informed that a drill was happening to be prepared for getting Livvy out as smoothly as possible (it was almost like a drill to get Livvy out safely rather than a general fire drill) it was so important that Livvy was able to gain the confidence in the staff that were looking after her, and to also ease some of the fears and anxiety that had built up from the first alarm. The head teacher rang me as soon as the children were back inside letting me know that it went smoothly and Livvy was fine, as time has gone on Livvy has been involved in many fire drills, her teacher is no longer informed before hand and everything has gone to plan since the first alarm.

We are constantly learning of new ways to keep Livvy safe and changing the way we do things as Livvy grows and develops and becomes more independent. As horrid as days like the one I described above are, they are so valuable in our crusade to keep Livvy safe, without things going wrong we can’t learn and see the weak areas in our plans and adapt them to ensure we cover every eventuality.


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