Our fight living outside the flames
CRPS is complex regional pain syndrome it’s often called by many different names but the pain is all the same.
There is very little known about this illness in the UK and being a parent of a sufferer is really hard.
As a family we all have to sit and watch our daughter/sister go through so much pain every single day. We can’t hug her and tell her that it’s all ok, we can’t kiss her pain away like you can with a “normal” child. When her pain spikes it is like a million shards of glass going through our hearts, you don’t even want to be in the same street as her let alone the same house as the pain is so bad.
Paige has been confined to a wheelchair and this might sound really harsh but life throws mud at you but it’s up to you if it sticks or not. It breaks our hearts to watch her struggle but as a family we have pulled our socks up and got on with it. Paige needs a little more help now than before but she also needs her independence. Her life has changed as has all of ours but its not a dramatic change we just have to think a little more and work a little closer together.
I have sat many a nights for hours and wondered “what if, did I do something wrong” but after those hours spent wondering I still come to the same conclusion “sometimes it just happens”. I have blamed the school, blamed the world and blamed myself but no matter what there is no one to blame at the end of the day, Paige is just a special young lady whose plans have changed. You never know, maybe she’ll change the world and find a cure for her illness.
There has been many outside agencies that have tried to get involved because we “can’t cope” but the truth is we can and we are! It’s not a case of “coping” Paige is our family and if we have to carry her a million miles we will that’s what families do. I’m not saying its like this for everyone but we are a strong loving family who have learnt to deal with what ever life throws at us.
I don’t think I will ever forget the day that I was taken to a side room by Dr Philpot and told just how ill Paige was to have our daughter compared to a child with leukaemia was the hardest thing to ever hear but then to be told that there is no cure for CRPS my heart broke. I think it was that day that we stood up and started to fight. Yes I have crumbled as have we all but never once have we given up and let this beat us. When one of us is having a bad time the rest of us take the rains for a while. I remember sitting in the hospital when Paige first lost the use of her legs and getting a text from my eldest son asking how Paige and I were and he wrote “how is Paige? How are you? Give Paige my love and tell her we are all thinking of her xxx” I had just been told that the CRPS had spread and my reply was “this shit just got serious its confirmed CRPS has spread!!”