As the time to Robbie's DBS surgery moves ever closer I thought it would be pertinent to discuss our thoughts, feelings and plans...
Thoughts - Again a very mixed bag of emotions are felt daily by the whole family, the DBS now sits very firmly in our minds and never seems to go away, even through moments of distraction the fears and emotions are lurking just below the surface. Even Robbie is talking about the surgery, he is inquisitive, and wants to know when it is, and we often look at the calendar and count down the days...
I had a very interesting, if somewhat difficult conversation with Robbie the other morning, there we were sitting together in the kitchen having my morning coffee and just chatting day to day chat, we were alone as the rest of the house were either still sleeping, or in the process of waking up, hence it was nice quiet one to one time with Robbie and I, and eventually he got round to talking about the op, again asking about how long it was till the day, and he said to me "I will get the op and I wont have Dystonia anymore eh?, because I don't like having it" It was very tempting as his Dad to say, yes, although I knew this was not the case, and deep inside I knew I could not give him this false hope, so I went on to explain, "No Son you will still have Dystonia, but it will not be as bad, and hopefully you will be able to move about a lot easier, and maybe write a little bit better... if you are really lucky you might be able to stop taking your tablets everyday, and maybe even get rid of your splint"... His reaction was fine, and he seemed happy enough with this, and simply changed the subject, obviously I couldn't let it go so easy, and inner feelings of this conversation have been repeated in my mind daily ever since. I admire how young kids, can just stand up, brush themselves down and move on from a conversation such as this...
Feelings - For some of you reading this who have experienced a child who suffers from Dystonia, you will probably understand what I mean, and somewhat to a lesser extent I am sure those who haven't witnessed such a trauma will probably be able to "put yourselves or thoughts into that persons shoes" I think my main feelings are towards the future, how will Robbie cope with this as he gets older, it is fine just now I can lift Robbie into the car, lift him in the bath, help him with his toileting needs etc, but the question you constantly ask yourself is what happens ten years from now, does a teenager or young adult want help to do these everyday things we take for granted, and the answer I always come to, is probably not.
It may seem as though I am being a bit pessimistic and assuming the op will not help, but I am a firm believer if you always manage your expectations and don't set your sights too high, then you are likely not to feel so dissapointed if things do not go so well....
That said I still have this other vision of a fairy tale ending to all of this, where it all goes really well and Robbie does most things by himself...
I believe the above pretty much sums up the mixed feelings I have as we move towards DBS... Only time will give us all the answers, and as stated many times previously, regardless of the outcome we will always be there, right by his side.
Plans - Immediate future we have quite a busy schedule ahead, with a new splint being fitted on Mon 24th (He has rapidly outgrew his original one). Off back down to the London (Evelina) on the 26th, for an overnight stay, and he has an appointment on the 27th, to get his mobility reassessed prior to the op... then home, and back down again on the 7th for admission for his op on the 8th.
The next few weeks are going to be traumatic to say the least, however I still am looking forward to it, at least we will know the procedure has been done, and we will assess the results in due course... there will be closure on this stressful period in all our lives.
Other than the above, we have made advances in relation to Robbie now accepting he needs to get his hair cut really short for the operation, he initially flatly refused to have this done and we envisaged this was going to have to be done by the surgeon on the day, however with a bit of persuasion from Mum (after her getting him a huge collection of Beanie hats for after the op) he seems to have accepted it more, further to this a family friend who is a hairdresser has agreed to give him a short cut at the end of this week (to get him accustomed to the style) and then a further really short cut before we head off down for the op in Nov...
We are also on the final week of the October holidays and the weather hasn't been great at all, so we have been a bit housebound and Robbie is really looking forward to getting back to school next week, getting back to playing with his friends... We have discovered a new skill though, making chocolate crispies !!!! Robbie and his sister Chloe regularly do this with Gran Ovenstone, however we had a crack at this at home last week with outstanding results, so good we made them twice... Not quite at the making scones or pancakes stage yet, but we will get there!
The cooking/creating cakes thing seems to be something Robbie really enjoys, who knows perhaps we have a budding Gordon Ramsay in the making here!!!
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