George enjoying his time at the seaside in Hopton, Norfolk
Back to life, back to reality. I have mixed feelings about the return to school. Routine is always good in some sense of the word. I know where I will be each day and I know what I need to do. However, I do love a little bit of lax during the school holidays. However, here were are, September. Where exactly has that disappeared to? 
It seems that we are just settling back into the routine and already I am focussing on what we are doing during the half term. It just seems endless doesn’t it? 
Today, was a difficult day for Peter and I. Suddenly, we are faced with the task of preparing George’s will now he is 18. It is something we have known about for some time but it seemed a life time away, yet here we are. 
There is a process that we have to follow due to George’s lack of capacity to make a will. George will need to have a Statutory Will rather than a usual Will. This is due to the fact that George is unable to communicate his wishes when he passes. It is such a morbid process that we need to go through, however, it is essential for someone who has money or possessions. 
An independent person needs to come and assess George to determine his capacity to make a will. Working in legal for many years, I understand the need and reasoning behind this needing to take place. Seeing it from the other side, as a personal issue, it is a lot harder to digest and deal with. 
An Assessment Officer came to visit George today and I have to say, he was absolutely fantastic. He took the time to speak with us and engage with George. He took everything on board with what we said about George and his communication needs. We said to him that George had been having speech and language therapy sessions, however, we felt that George had taken it as far as he could and it no longer felt it appropriate for him. George responds to a simple two choice question, yes or no. Holding a hand up and George eye pointing is the best method. 
George is always distracted by us being in the room, Peter especially, so we felt that it would be more appropriate to sit in the other room and let the officer ask the questions as needed and necessary. It was very difficult to listen to, listen to a random person asking if George understood what is required to make a will or who he would like to leave particular items too. Whilst George was communicating yes or no answers, there was no clarity in these messages. George was just happy to meet someone new and have the focus on him, which he loves. 
The officer said that it wasn’t usual for him to give a definitive answer on the day but he was very certain that George lacked the mental capacity to make a will. Of course, we already knew this. However, it is very sad to know that our son will never be able to make a definitive decision for himself. It makes me question at times, are we making the right decisions by him. We can only try and guess what he wants. However, as parents, we try so hard to give him everything he wants and needs. George always seems to be happy enough, we certainly know when he isn’t! 
Listening to George trying to vocalise and try and communicate with this officer, is just extraordinary. He was vocalising so much like he wanted to interact and communicate. I was sitting there thinking I would love to have a Steven Hawkins type communication system so George could communicate with. I just feel in my gut that he has it all going on up there. His wicked sense of humour has to reflect that surely. 
It is very hard listening on from another room, someone asking the question of what your child wants when they die, do they understand that. The answer is no. Just thinking of George not being in in our family equation seems bizarre enough without thinking of the feeling of loss that goes with this is just unimaginable. 
It is always wake up call as to what the future holds for us, as do so many other parents have to go through this thought process. We all deal with it and put it on the back burner and deal with each day as it comes. Time is precious and we need to live in the here and now with the time we have left. We need to enjoy and live life to the full. 
There is so much more I want to say after today’s events, however, it is not always appropriate to share everything as I am quite a private person. Not everything is fair in life, but, you have to make compromises sometimes. Not always how you want to but you do it tick a box or do it for the sake of calmness and serenity. 
Now we just wait until the Assessor returns his report to the appropriate bodies for us to move on to the next stage of the process. 
It has been a very thought provoking process, it does make realisation kick in. Everyone who has a child or loved one with a life limiting medical condition have these thoughts in their head. How long do we have? Are we doing right by them? Are we ensuring that they have everything they want and need? 
This has spurred me on to completely revamp George’s room and give it an adult feel. So I have been on a little spending spree to spoil my lad. It is actually really lovely seeing it come together and making a space for George that is for him to chill and relax in, just like his twin brother would. Obviously minus the Xbox! Although we may move the Switch into his chill out room, I think he would really love that. 
Have you been through this process of a Statutory Will? Is there any help or guidance that you would like to share with others? Are you someone about to go through the process and need some support? If so, please get in touch. 
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