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Summer time and the living is........

Yes it's summer time and school is out and families everywhere are relieved to be free of their relentless early morning routines. Holidays abroad are beckoning and one way or another those lazy hazy days of summer are on our mind, alfresco dinning, paddling pools and the sound of children's laughter as they make the most of outdoor living. Idyllic summer holidays, unless it rains of course but then mums are always prepared for rainy days with indoor activities up their sleeves or a trip to the museum or something similar. 

But then there is the child with epilepsy whose condition doesn't cope with heat or sunlight or even too much running around. That child remains in doors whilst siblings play in the garden as described above. I often wonder what our son Muir was thinking of his two brothers in those days when he sought refuge on the sofa, escaping the elements of summer time that aggravated his epilepsy, whilst they played outdoors in the summer sunshine. The feeling of isolation must have been overwhelming, despondency too as his desire to participate was overwhelmed by his inability to control the symptoms of his condition.  He would sit there pale and sad, like the child that had been left out by his play mates. He was quiet. Conversation was not forthcoming. Often he would just sleep. I could only dream of the day we might enjoy a proper holiday abroad as a family. For now even summer days at home were tough. 

Rainy days were no better and thunder and lightning was especially bad and as his brothers grew up and aspired to more challenging activities, Muir still preferred the duck pond. It was impossible to please all three and whilst Dad worked, Mum toiled with the challenge of entertaining these three boys equally. In fact a summer of rain was the worst. We could do nothing that would please anyone and slowly we went mad. I desperately wanted summer to end in those days and the relentless term time routine to return. 

As the years passed we resorted to summer holidays abroad without Muir. It was the best we could do to ensure that Muir's brothers had the opportunity to experience a proper family holiday without the constraints of their brother's severe epilepsy and his profound learning disabilities which were increasingly apparent and limiting. Then the guilt of those holidays abroad without him got the better of me and so we determined it was time to give it another go. Of all places we took him to Dubai and it worked for a while with fantastic support from the kids club and a dedicated carer to enable us to go out for dinner in the evenings. But like all good things it came to an end when I saw him, like Gulliver, in the ball pool alongside the small children. It was too unkind to expect him to be entertained in that way and he was actually a risk to the smaller children. Pool time was later in the day when the sun was going down and comprised repetitive play with plastic ducks, a bucket and a ball but increasingly the temperature changes brought on life threatening seizures. 

Back to the drawing board for a while and a team of cares were brought in in our absence on holiday and together they did all the things Muir loves within the limitations imposed by his health and the weather, neither being mutually exclusive. A costly affair but his happiness is worth it, although he is always pleased to see us return home again.  Racked with guilt, we made another attempt at including him in a holiday abroad, this time to Barbados. We rented a villa and Muir's carer came with us. He rose to the occasion, he was determined in his own way. Our arrival moment at the villa was a treat as he appreciated where he was with his family and we watched him take in the details of the pool, the garden and his air conditioned bedroom that for his own safety and security he would be sharing with his brothers. We tried hard to impose a routine that would underwrite his health for the duration of our stay. Regular meal times were important and an afternoon sleep that removed him from the heat of the day in to the comfort of his air conditioned bedroom. Trips to the beach were carefully planned but the lack of shade and the bright sunshine reflecting off the water meant that such days were few and far between. Occasionally he would come out to dinner with us in the evening but for the most part he had supper at home with his carer or another family member or two. 

It was never a relaxing holiday and there was no such thing as spontaneity. Sleep at night was often disrupted as it is at home and as the days rolled on Muir's enthusiasm for his holiday home in the sun diminished and his temper was increasingly frayed - in fact, tempers all round were being tested. Last year we left Barbados with a sense of relief that it was over. It was a bridge too far and I was asking too much of Muir and the rest of the family. The flight to and from home had always been relatively uneventful but on this occasion it was a night time flight and Muir couldn't sleep. Mid-flight he declared that he wanted off the plane and he meant it. We were half way across the Atlantic Ocean. For the rest of the night we did everything in our power to keep him entertained, distracted and under control. It could all so easily have gone so badly wrong. 

So there will be no more holidays abroad for Muir, at least not for the time being. I have come to terms with the fact that the UK summer weather may not be great, it may not be good for Muir's health either but it's the best place for him in the circumstances. 

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