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Living in a bubble that pops occasionally


I live in a bubble world...the world can be a harsh place for children who have disabilities like my Roo... so I have created a bubble world where he is protected, shielded from the harsh realities...Living in our bubble world we can still see and hear everything that is going on in the world around us but I am able to deflect and bounce away issues that isn't worth breaking for.

I know living in a bubble world is not reality but it enables me to "forget" that nothing is the way its supposed to be...Lately that bubble has been stretching to its limits due to certain changes that have been happening over the past couple of weeks raising concerns - 

  • Roo shaking/twitching/tremors episodes have started to become a lot more apparent over the past month... before they were only relevant to his night time problems but now myself, Waz & the nursery staff have noticed several episodes where Roo will tremor, be more shaky/twitchy than normal...his last EEG showed no epileptic activity so that was reassuring but it did show that he has a higher frequency than normal but they cant give us an explanation to why he has this which makes me worry as I hate the not knowing why...I just wish for once his tests would come back with a very simple answer alongside a simple explanation of why but as usual in our case we always get the " we cannot explain what the significance of this means and whether it affects his development". So as a result of that Roo is going into hospital a week on Tuesday for minimum of 24hrs for video monitoring EEG which I cannot stop worrying about as I know how much he hated having the wires on his head the last time ..its gonna be hard keeping him amused and distracted for 24hrs...
  • His moods are starting to change... before he was always such a happy, contented child who more or less let life pass him by... he still is like this most of the time but lately he has started to have times where he will suddenly start screaming, or burst into tears over something small like taking him to another room etc...its becoming harder to reassure him..he has started to walk backwards until he touches a wall then he will move along it till he get in the corner and just sit and scream and cry...its so unlike him... also when he wakes up he is sometimes so distressed that it takes ages to calm him down... if he is really distressed first thing in the morning it gives us an indication of what the day will be like - often with him being lethargic, not wanting to move or do much, crying over the tiniest things..this is not him as he is always on his feet wanting to be on the move, getting up to mischief....
  • Also he has had a lot of bad falls recently causing him to injure himself quite a bit and several were close calls to ending up in a & e but thankfully we managed to treat it at home...he gets so upset when he is falling..Nursery staff have mentioned that it may be connected with his tremors/shaky episodes that he has been having recently which is making me quite worried but at the same time I feel frustrated that we aren't getting any answers to why except to just keep a record and video as much as we can!
  • The past 10 days Roo has started sleeping through the night which is unusual and even that makes me worry!! Ridiculous! You think I would be over the moon about getting my nights back but I spend them worrying about whether the monitors are working! There have been occasions where I've woken through the night and checked the monitor to find him awake but not crying so I don't really know how much sleep he is actually getting!!

    There are several other small things too that aren't worth a mention but it all adds up...but I was doing well keeping the bubble contained and preventing from all the many issues poking the bubble trying to make it pop...




    but when the bubble finds the right surface it will burst and leave you sitting somewhere that you could not have floated to on your own...this happened earlier this week...two little typical girls came for a visit...the eldest was only 6mths older than Roo and the youngest was 2 yrs younger - a mere baby herself , just 9mths old... For 1hr they stayed and played with Roo's toys - something Roo doesn't do with most of them as he doesn't understand them, the differences between the older one and Roo was obvious...to the outside eye they were similar age, same height but yet so different as one could talk in proper sentences about anything, toilet trained, run, jump, ask questions, play with toys without help, understood everything that was said to her, did what she was told and yet the other could walk but unsteadily but could not do everything else...if it wasn't for his toddler body he would be more like the 9mth old in development terms of learning etc...The 9 mth old suddenly to our amazement came out with the words "Dada" while looking at Waz..in that moment she was more "advanced" than Roo in that area..it was like being hit by a truck as it made me realise that the older Roo gets the more "obvious" the gap is between him and other children of similar age..my bubble was well and truly burst that day.....



But now I'm back in my bubble but I'm prepared for it to burst again as I have the dreaded Stage Assessment meeting on Tuesday......











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