Sunday afternoon I was snuggled up with the boys for a movie afternoon to enjoy their choice of Despicable Me. When watching the pre-film trailers, an advert for Disney came up with a video montage of fun rides, water park and the general magic of Disney. I turned to the boys and said, “that looks amazing, would you like to go one day” , to which of course came an immediate and resounding “yes, it looks awesome” from Eddison and “cool Mama” from Raife. Of course in my mind, I am thinking, this is totally doable, when they are bigger, right time of year, selecting safe attractions, lots of pre-planning etc etc, but I didn’t voice this logic”
We watched the film and no more was said, then over 24 hours later while tucking them up in bed tonight, Eddison sits up as I am leaving the room and out of the blue says “I don`t think I can go, my visor will get wet”, “go where” I said “in the water” he replied.
Assuming he was talking about tomorrows swimming lesson, I said “no honey, you don`t need to wear your hat at the swimming pool”. “Yes I do” he said, “and what if the other children call me in and I can`t go. If I get my visor wet it would be dangerous”
Realising we were talking at cross purposes I asked him to go back to the start and tell me what water he was talking about “The Disney water” he says, “I don`t think I would be able to do that, it not going to be safe. I don`t think I can go”
It was one of those all too frequent times at the moment when I realise just how much this little man has to deal with. Over and above the various subtle strategies he has developed to compensate for the losses and voids in his life, there is a whole layer of thought process that he carries with him every second of every day which involves him constantly scanning his current environments for safety as well as assessing how he fits safely into the future.
Recently a daily question has emerged “Is it still Winter”, so aware is he, that the nights are drawing out with the subtle change in daylight that his thoughts are turning to the prospect of Spring and Summer around the corner; most 4 year olds would be completely oblivious to such a subtle shift, but this is not lost on Eddison.
It`s so difficult to grasp the level of emotional affect and anxiety it must have on him to have an inherent fear of the very air around him, and to cope with the feeling of vulnerability to be so entirely dependent on those around him to ensure his safety and make wise choices on his behalf.
I find the only way we can keep up with his ever maturing understanding and comprehension of what having XP really means to him, is to pause for a minute and take the time to have a stroll in my mind through his day, his week, his month and try as best I can to see things through his eyes, with the weight of his thought process, fears and anxieties.
It`s a real hope of mine that as he progresses through life, others around him will also on occasion take a minute to do the same, and with the benefit of seeing a glimpse of life through his eyes will gain a real understanding what makes Eddison, Eddison.
With understanding comes compassion, appreciation of difference and sensitivity to others unique needs