Thursday, 6 November 2014


School holidays can be hard, but we find the best way to spend the shorter ones is for the four of us to go away together. So, this half term, we rented a cottage in the middle of nowhere in north Norfolk.

We have previously taken Jessica abroad, but since her condition became harder to manage, in the last year, we have stayed in the UK.

Holidays with children always need a bit of planning, but especially so with a disabled child. The first challenge for us is deciding where to go, and finding accommodation with a layout that works for us. Sometimes, we find a cottage first, and then research the area; other times we have chosen the area first.

For the holiday, it has hard to meet the whole family's needs. On one hand we have a hyperactive 2 year old, who just wants constantly to climb things (anything and everything!) And then we have Jess who has all the limitations of a girl with Rett Syndrome.

For the accommodation, it has to be wheelchair accessible, ideally all on one level with space for Jessica's wheelchair in all the rooms. Other things we need to consider are the bathroom and how we will bath/shower her, and what equipment we need to take to be able to use the bathroom. Also, in the bedroom, how are we going to manage Jess in bed without her electric bed with extra high sides. Sometimes we have put her mattress on the floor with pillows underneath it to raise her head (to minimise her reflux). If there isn't room for this, we have a special needs travel bed which can be fitted onto a normal bed and will stop her falling out, but this has its own complications.

Then comes the planning - ordering oxygen to arrive before us, making sure we have all Jess's medication ordered, arranging for the feed for her gastrostomy to be delivered if it can be.

It is impossible to pack lightly with a disabled child. The amount of supplies and equipment we need to take with us fills the car- oxygen cylinders and masks (for the journey) oxygen monitors, breathing monitors, a video monitor, Jess's sleep system, all her feeds, giving sets (if not able to have them delivered), syringes, medications, stethoscope, thermometer, enough nappies/pads to last the holiday, food blender, food thickener, bibs, bath seat... the list goes on and on.

One thing that we hadn't considered was that staying in a very rural area meant that we didn't have a consistent mobile phone signal. Fortunately, the cottage was close to a farmhouse where the owners lived, and they were very happy to lend us their back door key so we had access to a landline to call an ambulance if we ever needed to (which fortunately we didn't!). I didn't like the image of us running around a field in the middle of the night trying to get a signal to dial 999, so I was very grateful for this.

We had a great week, which we all enjoyed. One thing we all, as a family, have in common is enjoying being outdoors - albeit for different reasons. So we planned lots of trips to places like nature reserves and wildlife parks, which tend to have something for all of us, including some great play/climbing equipment for Anna. We managed to find a nature reserve with lots of wheelchair-accessible play equipment, a wheelchair-accessible narrow gauge steam train and a tour boat on the Norfolk Broads which had a wheelchair lift.

Another highlight of the week was going owl spotting in the evenings - looking for the resident barn owl on the farm we were staying at - both girls enjoyed this.

This was a much needed holiday, and we all came home feeling rested. I have so many lovely photos from the week, I can't put them all on here, but here is a selection: