I wanted to add that having been brought into the situation that Harry is in, how informed we have become of the existing 'big society'. David Cameron seems to think he is creating this 'big society' and has been moving resources previously paid for by the government or council to the third sector (charities). Thus moving the cost of providing services further onto communities to help fund raise to pay for them!
I wanted to highlight that already we have been supported by the organisations of:-
McMillan nurses and
Martin House Hospice
To name the big ones and these have been in existence for years, providing valuable services and they are all funded predominantly by donations and not the government.
We have also been overwhelmed by our work and local communities in the efforts people have gone to, to raise money to enable us to continue taking Harry out, to create our memory box!
People have also been very generous in providing their time to organise events that Harry has enjoyed attending and that have financially benefitted him. We know that we won't be spending all the money raised on Harry as quite simply I don't think he is going to be here long enough, but we will continue making that memory box, which may be now about buying things he can do at his bedside such as lego and air fix models! We are also acutely mindful of Callum and when Harry has died we will be treating him. We mustn't forget the toll this has had on our marriage either and we will need treats too.
People have also provided their time in showing Harry around places, such as Embsy railway and Diggerland. Such experiences have provided such fun and memories too.
I also love the Community of Otley. Within minutes of putting a request on Facebook's local site for books for children age 5, for Martin House hospice, offers came in abundance and a friend is going to collect them for me too!
I am trying to highlight that 'the big society' already exists and communities already pull together. When I have the time I will write to David Cameron!
Having a child with a disability has opened our eyes to a world many know nothing or little about. The challenges, the strains, the courage it takes to keep putting one foot in front of the other and carrying on can be emotionally exhausting. The organisations and the services provided not by the government, but through the donations of all you lovely people really do make a difference!