Message To God and Skydive - Aug 7th 2011

Here we are a week down the line since our return from the Evelina, it has been a long week, and Robbie seems to be struggling a bit more than usual with his mobility since his return to Scotland.

I think this could be due to a variety of reasons, from the initial anti-climax of leaving the medical environment where he was constantly given full focus and attention, to going back to the home environment, where perhaps the focus needs to be more shared amongst all the family, alternatively it could be due to the hotter than normal weather taking it's affect on the Dystonia, then again, maybe it is just appears this way as we are now more aware of his dystonic movements, and the effects they have on his stability and mobility.

He has also had a few outbursts this week, and seems to be mainly down to him becoming more aware of his inability to perform everyday things as quickly or efficiently as his peers... this seems to lead to frustration within Robbie, and he does seem to be becoming more prone to quite angry moments. Patience has to be the key here, although it can be difficult at times to remain patient...

I would like to share a perfect example of self frustration Robbie is currently experiencing, early in the week Robbie was playing with a mobile phone, and a very interesting and thought provoking small discussion took place...
Mum asked "What are you doing"
Robbie simply replied "sending a message to God"
His Mum then went on to ask, "Okay, and what are you saying to him"
Robbie replied "I am asking him why he gave me twitchy arms and nobody else has them"

As you can see, from the above very short conversation, Robbie is obviously very aware he is a bit different from other children his own age, and this is really affecting him. I am sure through time he will come to terms with this, however it is painful to watch him becoming more aware of his condition and difficult to cope with both from his perspective and from a parent's perspective... Roll on DBS to try and help him on this aspect and allow him a bit more movement and control.

Overall Robbie is still getting along reasonably well, and no other problems to comment on at this moment in time.

Yesterday (6th August 2011) the whole family attended a skydive arranged in aid of the Dystonia society, the jump was done by a family friend (Jill O Donnel) who kindly arranged the jump, and went ahead and took the plunge into the big blue sky from 10,000 feet. (Braver than me by the way)

Not sure how much has been raised in total as yet, however this will be updated when we have the final confirmed figure. Hats off to Jill for taking the plunge, as similar to ourselves she was totally unaware of Dystonia prior to Robbie's diagnosis.

Other than this, it has been a relatively quiet week, apart from the standard back to school shopping for Robbie, as the schools go back in a couple of weeks up here. Looking forward to it as this occupies Robbie's  mind and keeps him busy...

Still no confirmation from the Evelina on a date for the DBS as yet, to be fair I didn't really expect to hear this quickly, however cannot help but feel a confirmed date on paper would make this process much easier to deal with as it would give us a confirmed date to look towards.