Let's start at the beginning. Your two year old baby is on a life support machine. You have never heard of encephalitis before. All you do know is, that he has been resuscitated three times and that a priest has given him a final blessing. The word petrified doesn't even begin to cover it. As dawn breaks, you see people scurrying across the car park outside, and then you feel angry. Why is everyone going about their business as normal when my child's life is hanging on by a thread?
After ten days, he starts to wake up. I am so overjoyed to hear him call my name, and then so upset to see him in such pain. Then you notice that he isn't moving at all down his left side. The joy gives way to fear and despair, when a brain scan reveals an acute acquired brain injury. We are told that the infection in the brain has left him with a left side hemiplegia. Never heard of that either, and we have no idea what to expect.
Home from hospital, and life is supposed to get back to normal. Only it's never going to. Our son didn't die, but he is very different to the one who went into the hospital a month ago. He can hardly sit up. He is tearful, and becomes hysterical if he needs to go to the toilet. His head is tilted to one side, and he doesn't seem to be able to see very well. His left hand is screwed up in a tight fist. He is confused and keeps repeating himself. Every now and again, I thing that he is very far away, and he is unaware that I am speaking to him. As he starts to get better, I start to fall apart. I feel so angry with everyone and everything. I should be feeling grateful that he is alive. I feel that I have let him down. I am his mother. I should have been able to protect him from this, and I didn't.
Then comes the exhaustion. When it is time for bed, if I try to move from him, his arms wrap around my neck like a vice and he says "Where are you going? Please don't leave me." Trying to hold down a job, taking him to see the consultant every week, going to physiotherapy appointments, speech and language therapists etc., I felt like I was on an elastic band that was going to snap at any moment. I went nine years without a proper night's sleep. Eventually, that band did snap, and to this day I have not fully recovered.
Starting school was exhausting for him. His teacher had never heard the excuse "I can't write anymore because my knees hurt." He was having absence fits and loud noises scared the living daylights out of him. He would never give in though. From the time that illness struck his brain, such determination set in to compensate. When he drew pictures of himself, they only had one arm and one leg, because he had no idea there was anything on the left side. The day his teacher came out and said "He's managed to use the hand dryer!" it broke my heart. The other mothers were staring at me as if I had two heads. I didn't care. I felt so proud, and relieved that he had done it.
Homework in secondary school was a nightmare. His concentration and memory were poor. We just had to keep repeating things over and over. He would get so upset and frustrated but he just couldn't try any harder.
Most of the time, I felt so alone. I wish the internet had been around all those years ago. The national charity for hemiplegia, HemiHelp (www.hemihelp.org.uk) has a wealth of information and a Facebook Group where people can share experiences and offer advice. I have read so many things on there and thought "I remember going through that." It would have been so good to have been able to ask others if they had similar problems.
When Rhys became involved in disability sports, it not only changed his life, it gave him one. The first time he played in a football match, my husband literally cried all the way through, because he never thought he would see his son doing something as 'normal' as that. To see him grow in confidence and self- esteem meant everything to us. The pride I felt when he walked out onto the Olympic Stadium Athletics track at the London 2012 Paralympic Games is just indescribable. I just felt like I was dreaming. To hear 80,000 people cheering for your son after everything he had been through is pretty surreal! Living with hemiplegia as a parent has brought for me emotions from one end of the scale to another.
Debbie Jones
Mother of Rhys Jones T37 Paralympian