Wandering

I’m lying in the dark a long way from home.  It is 5 am, and Caspian is asleep and Maxwell is not. I am on holidays. After 3 years of relentless “doing” with Caspian, I needed a break. Not a stay at home break; a wandering break. I am under no illusion I will feel rested when I return, but perhaps some of my wanderlust will be satisfied. And the children will enjoy themselves. Holidays for the last 3 years have been fraught with worries, hospital trips, endless sleeplessness or simple fear Caspian will end up falling over or off something. Last year we travelled to Manly, a classic waterside holiday, part of Sydney, and stayed in a hotel and did little. Cas was still not sleeping at that stage and my mum joined us to help, we still managed to call 000 during our trip. This January we stayed in an incredible place, Narooma, heaven, best holidays in years, except we had a nasty seizure adventure with cas and went on a hour long trip to the local hospital on Australia day. This June my wanderlust was rearing its ugly head, I was planning to go to Darwin to visit a cousin, but we went to hospital and started the ketogenic diet instead. Each break has been 5-7 days, never enough to recharge. I feel like pizza dough, spun high and stretched…

This holiday is not well organised, oh so last minute, I’m winging it… I wonder where I will be tomorrow. I am making sure each place I stay at has a kitchen, I bought my Thermomix with me and I am simple making meals in batches for the day. Caspian true to form has gone from very well controlled two weeks ago to a disaster. In 4 days he has had 4 seizures- which is a lot for him. He stole some food on Saturday  and on Friday we also dropped his Topamax. Perfect to disaster in a day, amazing! He had a lovely seizure as we drove along the high way. I just stopped pulled him out and held him in the recovery position. It seemed so odd and regular all at once. I don’t know what is normal anymore, as long as he is well cared for, does it matter where I go or how I wander? A mad mother at the helm!

 

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