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Having a son with quadriplegic cerebral palsy makes life a little more complicated for the Barnes family but, as mum Maria explains, they don’t let it limit family life.
Just because we have a child with some significant physical challenges doesn’t mean normal life can go on hold. What we show our six-year-old son Tom now as normal and doable will set his ‘compass’ for life – he can do what he wants to do, that’s the message we want for him. It’s physically tiring and it takes a great deal of planning, but we do it anyway.
A few months back we took the kids adventure camping. My initial enthusiasm waned a little when I saw the gigantic mound of stuff we needed to take, just for one night: toilet chair, huge off-road special needs trailer buggy, changing mat, endless changes of clothes, huge bag of meds, pads and wipes plus all the general camping stuff. I tried to stop thinking about the amount of work it was all going to be and after muttering ‘never again’ to my hubby several times, we set off for a little campsite not far away from home in Sussex.
Me and the kids explored snake houses, chased after butterflies, made weird potions and investigated who we could make friends with while Terry ferried our massive mound of stuff from the car in huge wheelbarrow loads. Our girls and a gang of other kids took Tom off in the buggy off to explore while we pitched our two tiny tents and put up a very basic camp shelter under which we put our mountains of stuff.
We had a glorious dinner of sausages in rolls and beans cooked over an open fire and at bedtime the boys slept in one tent and us girls in the other. Tom slept soundly all night whereas both girls had me up all night with loo trips and sleeplessness due the wind and heavy rain that battered us as the weather took a turn for the worse.
In the morning it was still chucking it down so we whizzed the kids back to the car in their PJ’s and stuck on the portable DVD player while Terry and I took turns to return to our pitch and take down our soggy camp for a quick retreat back home for a major dry out session and a warm breakfast at home!
The kids loved every second of the adventure and I went to sleep that night in the comfort of my bed still muttering ‘never again’. Until the next time!
One aspect of family life that is challenging wherever we go is the lack of accessible toilet facilities – definitely not a ‘good’ part of life.
With very limited standing ability, no sitting balance and a very tricky Lycra suit with lots of zips to sort out, Tom needs a changing bench and a hoist. He weighs 21kg and is far too big for a baby changing unit.
It’s not practical to dash home every time Tom needs the toilet, but the alternative – laying him on a toilet floor – is so undignified and unhygienic it leaves me tearful every time we have to do it. I am part of a local group lobbying for more hoist assisted toilets – it’s become one of my top priorities, for other people with disabilities as well as my own son.
You can read more about Tom here and you can find out about research we’re funding to help children with cerebral palsy here.