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So We Took Muir to Barbados

It's a tough life for children when they have a sibling struggling to cope with profound epilepsy. There are so many family activities in life we all take for granted that often become impossible. When Muir was a small boy engaging all three of our children at the same time and at the right level was a challenge. As his siblings grew up they became much less enthusiastic about the duck pond, whilst Muir was not capable of go-carting or rock climbing. Even going out for a pizza was difficult sometimes because of Muir's behaviours.

Eventually we realised we had to leave Muir at home and take his brothers on holiday without him. Somewhere in the course of the year they deserved to experience a 'normal' family holiday. We all did. Lucky for us we had and still have Inga who looks after Muir in our absence. We arranged additional visiting carers to support her when we were away for longer periods. None of these arrangements are ideal and the best laid plans don't always anticipate every eventuality. One summer Muir went in to status whilst we were in the Caribbean. On another more recent occasion Muir's behaviours were unmanageable. It was time for change and a family confab resulted in an enthusiastic but nervous decision to take him with us to Barbados this summer.

So we took Muir to Barbados. Inga came too and also one of my closest friends and her husband. We were eight people in total. We stayed in a lovely villa in the middle of a golf course. Much to Muir's delight the golf course was populated by green monkeys and there were humming birds and lizards too. We were not far from the beach and the villa had its own pool and a luscious garden. It was hot (29-31degrees) but Muir coped. In the course of two weeks he had just one seizure whilst sleeping in the afternoon, which he did most days in order to cope with the heat. Inevitably Muir had his limitations but we worked with them and round them and pushed the boundaries of his limitations on occasion too. Boat rides and lovely lunches were enabled only because of his Vagal Nerve Stimulator which, with extra swipes of the magnet, secured additional minutes of Muir's coping time enabling us to enjoy our best laid plans to the full. These are moments to be cherished and when I hear Muir telling his teachers and his carers now about his experiences in his own fashion, I know we have achieved something remarkable for him. In turn, Muir pays us the compliment of rising to the occasion as best he can with clear evidence of an understanding of the 'treat' he is enjoying.

Special moments include his struggle to stay upright as the waves sucked the sand from under his feet testing his balance, his first soak in the sea supported by Dad and his older brother, holding on tight in the golf buggy as we whizzed around the golf course in search of green monkeys, running to retrieve golf balls in the garden that he had successfully hit himself albeit no more than a few feet, learning to play with grown up pool toys in our swimming pool and eating out alfresco by the sea. Best of all was his excitement on his return home which he couldn't contain, so much so that he stayed wide awake throughout the overnight flight home.

I am so proud of Muir and also his brothers but in this celebration my thoughts turn to others less fortunate than ourselves. There are families struggling to cope with a child's epilepsy for whom a holiday like ours is just not possible, perhaps never will be.  Thank goodness for charities like ' Make A Wish.' And then there are those families living in countries in turmoil like Syria - I wonder how they access an ongoing supply of anti-convulsant medication when a country is in chaos and medical supplies are threatened. It doesn't bear thinking about. Our day to day struggle is enough without the added consequence of war.

And so it is back to reality and the desperate need to continue fundraising. Our Mum on the Run For Epilepsy campaign begins in earnest in September. I can't say that I have many miles under my feet in preparation but like Muir, I am determined to rise to the occasion. A number of schools across Scotland have invited me to attend their assemblies and meet with pupils to discuss epilepsy in the course of my running and training which ultimately will climax with the London Marathon next April. Our travels will take us everywhere - from Edinburgh to Glasgow, Fife, Perth, Aberdeen and even the Orkney islands. Along the way, as Tesco Charity Mum of the Year, we will be shaking our collection tins in Tesco stores. Do look for us and say hello if our paths should cross - oh, and even the smallest contribution to our fundraising campaign will help us make a difference! Thank you.

Ann 

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