Time is wearing on and we are getting closer to heading off to the Evelina once again, we will be leaving good old Kirkcaldy around 10am Friday morning, and stopping off in Sheffield overnight.
Route planned and ready to rumble… You may have read my previous posts about being on holiday, and we have learned this week the downside to this is you naturally come back from holiday with a mountain of washing, beside all the other bits and pieces you pick up whilst away !!! After Jane and I have managed to clear the backlog of laundry, not at all helped by the very un-sunny weather conditions we have quickly found ourselves in the position where we are re-packing hold-alls ready for the visit that is imminent – so busy, busy, busy there then.
Other than planning for the trip we have arranged for Rhys our eldest son (14) to go to his Grans to stay for the week, after lengthy discussions it transpires the thought of going to London and sitting in hospital foyers and waiting rooms did not sound too appealing to him (at his age I totally understand where he is coming from, especially so with the local team he plays football for having a couple of friendly games and training restarting after the summer break). Always has had a busy social calendar our Rhys.
So it will be Mum, Chloe, Robbie and I making the trip, at least this will free up leg space in the car, so we will all be comfortable.
Another upcoming event is a skydive, which my brother’s wife, and her sister are doing in aid of the Dystonia society on the 6th August, a really touching gesture as (like us) neither of them had heard of Dystonia prior to Robbie’s diagnosis.
Most of the family regularly asks for updates on Robbie and how he is doing, and all have offered help in a variety of ways, this helps immensely and at least shows us they care.
One area I am finding really difficult at the moment is, as Robbie is getting bigger and taller (and he has taken a real stretch lately) some people (probably through their own ignorance of the condition) seem to be less tolerant of Robbie’s instability, and tend to scowl when he walks in front of them, holds them up or gets in their way, I am not the type of person to sit and explain to every person what is wrong with Robbie, but when it happens it makes your blood boil, and it does make you want to lash out, however thus far I have managed to keep the head and not lost it… If by any twist of cruel fate you have a child in a similar situation I am confident you will understand where I am coming from.
In a similar fashion, if people have concerns about the safety of their child whilst playing with Robbie, then maybe they shouldn’t put their child in that situation, people need to simply understand it is his movement that is affected mainly by Dystonia, not his mental, cognitive or emotional state.
I also feel it would be good to share with you all, there have now been a couple of occasions where younger children, standing in a queue somewhere with their parents have asked “What is wrong with him”, all much to their parents embarrassment, this is by no means offensive to me, and I am happy to explain to these kids what is wrong and what problems he has. If nothing else at least they are being honest and asking what they are truly thinking, as opposed to older children and adults who simply have a tendency to look at him through the corner of their eye, or simply ignore him.
In summary I think having re-read this, this part of the blog is a bit dark, and maybe I am just getting rid of some angst that has built up within me, but I think the main point I am trying to get across here is, I have no objections to being asked what is wrong with Robbie, and Robbie loves to talk about himself and he certainly doesn’t mind so if by chance you come across anyone is a similar position don’t be afraid to speak to them, and a smile from a stranger isn’t always a bad thing.
Okay I will step down from my soap-box now… Robbie has had a good week although sleeping is still a bit of an issue, other than that we are all good, roll on Friday and lets get those wagon trucks rolling…
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