What a crazy year we have had so far. As you all know, we started the year off in the Leicester Royal Infirmary, watching the fireworks for the 4th floor and since then things have been a little busy to say the least. Our Easter weekend was brilliant with a trip down to London to watch the rehearsal of Ant and Dec Saturday night takeaway which was brilliant. The boys were lovely and so genuine. Unfortunately, we came home to a broken lift, which took 11 days to fix. During this time a neighbours son had to get into the lift with Declan to press the buttons in the lift as Declan doesn’t have the upper body strength to lean forwards to do it himself and the remote wasn’t registering with the lift. Declan found this very difficult and highlighted to him the full extent of how little independence he actually has. Only two weeks beforehand his chair broke down and had to go away to be fixed which left Declan without a chair for a week and a half and meant he was bed bound. Declan is only able to sit in either his chair or bed now due to how weak his muscles are so he wasn’t able to sit on the sofa or a chair. Again this brought home some of the feelings relating to his condition that he keeps buried deep inside. He was totally isolated to his room upstairs and had far too much time on his hands to think, which resulted in him thinking about his prognosis and how scary it is. If social services had listened to me 18 months ago Declan would have had a downstairs bedroom by now and although he would have still been bed bound he would have been in the heart of the house, his bed could have been wheeled into the sitting room or the garden so he didn’t feel so isolated. It would also have mean’t not relying on a lift which keeps braking down or having to ask his mum to reach to get the remote for him so that he can use the lift. A downstairs bedroom would not just mean Declan could be rushed into hospital a lot easier and much quicker, or that he could safely be evacuated in the event of a fire, it would also give Declan more independence and a better quality of life which, to me, is so important for someone with a terminal illness. Declan has so much to deal with and handles the day to day struggles with such grace, to be able to independently access his bedroom may sound small, but for him it would be something very big and would give him a little more dignity and freedom. This issue has now been in the hands of solicitors for almost a year with social services ignoring all of the recommendations made by the consultants that look after Declan. Due to the ridiculous amount of time this is taking we now have a petition running, it may not, legally, make them have to build a downstairs bedroom, but it will show them the support that is behind Declan. I have also been asked by the muscular dystrophy campaign if our story can be in the national press to highlight a major issue that many disabled families face, so watch this space.
I am writing this article from Rainbows Children’s Hospice. I underwent major surgery 10 days ago to remove a very large cyst and to also treat an ongoing health condition. Due to the surgery being on my abdomen it means I can’t do any of Declan’s care needs for six weeks at least, so we have been staying at Rainbows. They have been amazing and I may not have been able to have the surgery if I hadn’t had their support. Declan is at an age where his favourite place is infront of his playstation but he has been incredibly understanding and took being here and me handing his care over to other people amazingly.
He never stops making me a little more proud of him.