It is exhausting. Constant fighting. Arguing with strangers for pennies. Begging for help, I am not ashamed to say I have begged. I have asked the same questions a thousand times and still received no answers. I am more quiet than normal, people notice. I just need space to gather my strength to carry on. Sleep is something I desperately need but cannot seem to grasp.

Politics is rife within every system. The truth is, to help someone who is vulnerable it costs money. No one has the “budget” or the “funding”, what ever the word they want to use to dress it up and make it sound official. Who places these prices upon vulnerable people’s heads? How do they sleep at night?

Mr Cotton made the decision to award my son £59.70 per week. The “decision maker” for the DWP. “I have decided that James (Kade) needs no help with mobility”

You do not speak to the “decision maker” he reads a report written by the “assessor”. Like Chinese whispers the sentiment is lost along the way, a decision is made upon a diluted reference to someone’s life.

So we wait yet again, like we have a thousand times. The risk of “disagreeing” with a descsision made by the DWP is that you could lose everything and be left with nothing. This is stated on the Mandatory reconsideration form. Do we take the £59.70 pw for my son and hide under the rug where we are swept. Or do we fight again for what he deserves. For me it is about the principle. My child has had a disease that has affected his brain and needs support. For me that is the beginning and the end of it.

We will find out in afew weeks whether Kades decision has been overturned. If it has not, I take it to the next level like I have before. Many people think that DLA and PIP are easy to access. I can assure you they are not. First time round it took me five months to secure my sons rightful level of support. There are people out there who desperately need this financial help and they cannot access it. The forms are confusing and the “face to face appointments”/ “telephone assessments” are an enormous strain on people. I wonder if the letters written by medical proffesionals are even taken into consideration.

One of the richest countries in the world, yet we still shit upon our most vulnerable inhabitants.

For every piece of darkness there is always a little glimmer of light. Look for it and you will see it.

Around a month ago little Onion became part of our family. The dog I was searching for, for my son, landed right on our doorstep. Thanks to a twist of fate and a little magic. Born into the world fighting to survive, she and Kade have everything in common.

I will tell you of a puppy who will stay in bed with her human when you open the door to check they are okay. Lift her little head and lay back down as if to say “I’ve got this”. I will tell you of the happiness she has brought to our home in a short space of time. I will tell you of the emotions she has empowered my son to show. Emotions I was afraid were lost forever. I will tell you that your gut is always always right.