Two weeks today – 25th October 2011-10-25

Here we are then two weeks today and we will be waiting on Robbie being taken off for his DBS implant... nervous times and the realisation of the surgery has taken its toll on all of us in one way or another throughout this time.

Pressure feels really high on the whole family unit just now, and I believe we are all a bit more reactive, and “short fused” at the moment, however on the positive side we often discuss the op with each other which helps to take the edge off the atmosphere somewhat.

Robbie and I will be heading off for London for his mobility to be reassessed, prior to the implant due to the changes in his ability of late, as mentioned previously in the blog. We leave on 26^th Oct, for his appointment on the 27^th, and then back home to Scotland after his assessment...

We have now received the “official” appointment letter from King’s College Hospital, so other than any unforeseen mitigating circumstances we now have the peace of mind, this will go ahead, this is a huge relief to us all, as the weeks had went by we envisaged further delays due to not actually having a written confirmed appointment, and having to rely that what we had been verbally advised didn’t seem to rubber stamp the op would go ahead (I think in the back of your mind, a written confirmation of the appointment cemented and expelled any doubt there would be last minute hitches, indeed it was like a reassuring “yes” this is going to happen)

Robbie was at the orthotic clinic yesterday getting his new shiny ankle splint, and all seems to be comfy and fitting well, hopefully if the op is a success this may be the last one he requires (Maybe I am being a bit too quick to state such a thought, but deep down I have a really positive feeling about this)

For those of you reading this who may be about to face a similar situation, I feel it is best to explain and talk about the effects of Dystonia from my own perspective, how I feel about Robbie’s situation from a parents perspective... you will probably run through some or all of these thoughts at some stage in this process, hence I wanted to put these down in writing and share with you all... It may help some of you out there... I hope it does...

I have been through an absolute, and frankly horrendous variety of emotional states throughout the process running up to the DBS implant, I have often felt isolated and alone, and asked the fundamental question - 

WHY ? - Why Robbie, why my boy... however over the years and months I believe I have slowly realised, it’s not really so important why this has happened, the cold hard facts are it has happened, and chances are we will probably never know why, I believe the most important thing is making sure we always try to do what is best for Robbie, do what will make his life a bit easier, I may have made some poor choices at any time but we always do what we feel is right for him at any given time.

Fear – Fear of the condition was also a major feeling that has been a major factor of stress throughout this whole situation, you will find fear waiting to pounce out at you behind every corner on this journey. You will worry and be scared on a variety of occasions... you will feel fear when you first visit a consultant, fear of their findings, fear of your child having to give blood (Robbie is petrified of needles still after so many samples being taken), fear of anaesthetics every time an MRI needs done, or PET scan etc, fear of lumbar punctures... As a parent you will say to yourself on every occasion please let it be me, let me take his pain, and take this away from my child.

Future – You naturally stress about your child’s future, I still daily think about this, how will he manage when he is older, starts secondary school, starts life after school, will he cope when we are not around anymore. It sounds silly, but this is something I am sure you will think about and go through on a regular basis.

Isolation – You will at times feel isolated, helpless and alone, and you do feel you are the only one going through these problems, in reality you are not, but you will feel that way... I would suggest (once you have a diagnosis – which can take a very long time) look for groups, charities, local support services etc, these can be a real eye opener, and help you to meet people who have been through similar situations, and this helps you to discuss your concerns, questions etc... Personally I have built a great support network through the above services and often it is good to talk to someone who has already travelled down the path you are currently on... I have many friends to thank for this, and often I will speak to them and ask questions on any area I feel I need to take some advice on... basically there are people out there who can help you get over your feelings of isolation, and social network sites and carer centres are a great place to find these people. I have mentioned one particular source below where you will meet a great group of people who have (and still do) help me immensely... There is a facebook group - The Evelina Childrens Hospital Dystonia Support Group this group has been a major help and source of comfort to me throughout this whole ordeal. Obviously if social networking isn't your thing, the Dystonia Society have an advice line which is available on their website... try these things they may well help

Again, this is only the tip of the iceberg on some of the feelings you will have along the way, and this part of the blog may come across as being somewhat dark and sombre, this was not my intention but I wanted to share some of the key thoughts you will at various stages experience, overall you are not alone, there is help out there, and people who understand your frame of mind at any given time. My e-mail address is available on this blog page if you want to talk about anything feel free to get in touch, add me on Facebook, or feel free to leave a comment and I will respond.... Just remember you are not alone in this, help is there, sometimes you just got to reach out and say “I am struggling... help!”