My Daughter.

I am warning you all now that amongst all the traumatic experiences I have been through (there is more) the worst period in my life was when my daughter became ill. There is no humour in this one and will be one of the toughest things I have ever written. I have spoken about it to only 2 people. I am even unsure of whether I should be writing about this or if I even have the words to describe my failings as a father and husband. I wonder do I have the right to try and express what others may or may not have felt. Do I have the right to ask for forgiveness? Is this a false act of contrition looking for sympathy and thereby deflecting blame? Or is it me unloading my grief and guilt in order to escape those Dickensian chains that I have forged link by link and yard by yard!?

I was an appallingly bad husband. I had an affair, I had breakdowns, I kept leaving home, I had a succession of poorly paid unskilled jobs, my physical health mentioned in the previous blog affected me and I still couldn’t see how much she loved me. Up until recently I had always told myself that although I was a terrible husband, I was a good father. Now looking back on my behaviour, I realise I was far from a loving supportive dad. I never explained to my children the life changing impact my daughters illness had on me and in turn on them and their mother.

I had left home yet again and I cant even remember where I was living at the time. I wasn’t even aware that she had been taken to the doctors and been sent home with what the doctor said was the beginnings of a cold. At the age of two my beautiful daughter was taken into hospital with meningitis. Sadly it was too late to stop what happened to my daughter. The doctors poor diagnosis nearly killed her.

I wasn’t there at the start of all this and partly in my defence I didn’t know but I should have. I should have been asking about my children everyday, but I didn’t. I was too wrapped up in depression and self loathing and was again sabotaging not only my life but those of my children and their mum. I was not there to support any of them. In 20 years there hasn’t been a day that I haven’t blamed myself for what happened to us all. Would I have done anything different? Would I have taken my daughter straight to hospital when the doctor sent her home? Would I have spotted it sooner? Her mum did the absolute best she could in the circumstances, and I have never blamed her for anything, but there will always be the What ifs. Whatever choice was made I wasn’t there to make the call and that was because of my selfishness.

I believe that even in the hospital they didn’t do the right thing for her. She should have been put into an induced coma but was left to fight it herself along with the obvious meds. She was left in an almost vegetative state. The last photo that I remember taking of her was of her standing on a pine box pretending to sing into a hairbrush. She had turned from a bright intelligent funny little girl into a biting scratching screaming monster almost overnight. I became more involved as I could obviously see that some help was needed back home so I moved back in. I know that both her mum and I were in complete shock at what had happened. It was like our daughter had been taken from us and been replaced with a stranger. It seems to me that she was constantly screaming and biting and kicking. The only emotions that showed on her face were confusion and fear. For all I know she knew what had happened to her but she could no longer talk to express anything. She could no longer walk. She couldn’t even hold a spoon anymore. I remember looking into her eyes that would dart from side to side looking for reassurance or help that neither of us could give. I remember the bravery of her mum and the determination to get support from the doctors and local services. I remember sitting by my daughters bed night after night after night, my hand on her head willing whatever was inside there to come into me and leave her alone. It was my time alone with her and when she was asleep the pain and confusion left her face and I could look at the daughter I used to know. I cried constantly and Im sure her mum did, but we never spoke of the emotional impact this had had on either us or our two boys. It seemed we were together only as a vital team to get our daughter back and we didn’t talk about us as a couple or even a family. Of course, we still made time for the boys with football and days out to the park and the beach, and I am still waiting for the two films that we made together! Our goals had changed and I think we directed all of our efforts to our daughter rather than concentrating on the family as a whole.

I know that her mum and I were barely coping but I know that my two beautiful boys suffered as much as we did. They had also lost a sister and again I don’t think either of us sat down with them to explain it all, I certainly didn’t. They were wonderful with their sister and helped as much as they could. They never complained, they never said a word about lost weekends or holidays. In fact even at the young age they were, they gave some strength calmness and normality to the house when in my mind everything was falling apart. There were very good times as well. I let the two boys bunk off school and we would get up at three in the morning to go fishing. I have many amazing memories of out fishing trips together, taking them to football and supporting all of their interests. I loved watching both of them play football or listening to them playing guitars or the drums. It would have been very easy to leave them to their own devices and let them both run wild. Despite everything they were wonderful children to bring up and their amazing sense of humour and optimism saw us all through some tough times.

You never expect this to happen to one of your children, its always some other poor family that has to deal with anger and confusion and the feeling of utter loss. At the same time as this we both had to deal with the practicalities of making my daughter as comfortable and as safe as possible. Again, it was her mum that arranged all the visits and the schools. I was trying to hide away from the fact that I had a disabled daughter. I didnt want to know about special needs and special schools. I detested the paraphernalia of the disabled child, the special little wheelchair, the special feeding spoons and bowls and bottles, the necessity to change nappies. Everything to do with my daughters disability reminded me of my failure to be there to perhaps make a different decision. The doctors were terrible. My daughter couldn’t walk or talk, she had entirely lost her motor skills and had severe ataxia. The doctors said that was as good as she was going to get. My crushing sense of guilt and self loathing for not being there forced me to believe that the doctors were wrong. I kept telling myself that by the age of 10 she would be normal again. Week after week and month after month we all became wrapped up in the recovery of my daughter.

Her mum constantly battled the authorities for help and she was as determined as I to get our daughter back. Her mum got involved with a company from Australia called Second Skin. This involved getting a reinforced suit made to help our daughter sit up and even start to walk. It even forced her arms around to a natural position. It must have been excruciatingly painful to wear. It was made of a thick lycra like material and reinforced with custom made strips of plastic around every single limb and all up her back and ribs. Every day we got her into this suit and every week we could see a little improvement. She started to hold a spoon and stopped scratching and screaming. Understanding was coming back into her face and we were gradually getting our daughter back. My daughters own determination and inner strength was and still is a constant wonder to me. Every day in that suit of torture her mother and I would sit on the carpet opposite to each other. We would just let our daughter gently fall into our arms and would pass her back and forth. I can still see her eyes darting from side to side from the ataxia, her arms shooting out for support and balance. The sheer strength of will from someone so ill to get better now shames me after what I had tried to do to myself. Gradually we sat further and further apart, and she began to ‘fall with style’.

My daughter got strong enough to move from her pram to a walker. Her brain started to find new paths and began to heal itself, bypassing those areas damaged by meningitis and medical incompetence.

One day we were doing the usual thing letting her fall and catching her. Then it seemed that something switched on in her little head and she began to walk. Her brain must have been working overtime to keep her internal gyroscope going. She kept falling and we would pick her up. She kept falling then started to get up herself. It took her months to achieve this and every day must have been such a hard battle. I remember her smiling and laughing and myself and her mum crying for what seemed like forever when she first walked and then turned and walked back again. I cannot imagine what it feels like to be unable to express your fear to anyone. What is it like to be trapped inside your own mind and being unable to ask for help, to ask what has happened to you? Without my daughters strength of will and bravery she would have lived up to the doctors low expectations and remained in her wheelchair for the rest of her life. Without her mums love insistence and dogged determination, my daughter wouldn’t have got that Second Skin suit or the help from social services. Without the understanding of my two boys and the sacrifice of some of their childhood we couldn’t have concentrated on getting my daughter well.

I continued to rage against the doctors failure to do their job and her mum continued in the harsh realities of caring for her. Visits to her special school reminded me of my failure. The school that she went to was very good and the physiotherapy she got there was amazing. However, I was very uncomfortable around other peoples disabled children. My daughter wasn’t going to end up like that. My daughter was going to recover and be normal again. School sports day were especially painful. Where other parents saw hope and love, all I could ever see was desperation, sadness and lies. Even days out were ruined. I remember we went to a fair and as we drew up in the car I asked about disabled parking. The guy looked in the back and declared ‘She doesn’t look disabled mate’. People would stare as we got out of the car at the supermarket, looking at us as though she should be dribbling and shouting rather than looking quite normal. At another event someone came over to us to and told us our daughter was drunk. We tried to get her into a normal school one day a week and she was rejected by her classmates. I cannot express how desperately sad that was for me and her mum. The effect on my daughter must have been awful. At times like those I often wondered if she would have been better off dying or being in a completely vegetative state. There would have be less pain and struggle and heartache later on in life. But she continued to rewire her brain and improved week after week and month on month and I continued on my path of anger and blame and confusion. My optimism for my daughter changed from ‘she will be normal by the age of 10’ to ‘she will be normal by the time shes 16’, gradually increasing as I then realised that she would never fully recover. Rather than enjoy my daughters recovery I continued to blame everyone. Rather than rejoice in the return of my beautiful girl I wanted to blame everybody else.

Of course, it wasn’t always like this. We all celebrated the achievements of my daughter. She started to talk again, feed herself, her ataxia began to calm and she came back to us all. I cannot even begin to explain what that must have been like to a 2 year old baby. To have that strength and stubbornness and that will to fight for so many years to get back to her family is very humbling.

My daughter will never be able to drive a car or be a doctor or a pilot or a lawyer or a shop worker or a nurse or a policewoman. I very much doubt she will be able to live a truly independent life. To look at her you wouldn’t know that she had been in a constant fight for her life over 18 years. She has the most wonderful outlook on life. I am so proud of all my children. I have always told myself that I have absolutely nothing to leave them when I am gone but I am beginning to see that it is not strictly true. I have had some small part in making them who they are, and although I cannot leave them anything, (apart from my Star Wars collection!) I can actually leave the world knowing it is a better place for my children being in it. All three of them are beautiful considerate caring genuine intelligent funny individuals. If only the world was full of people like my children. I cannot change the past but I hope that this goes someway to explain my failings, and my weaknesses. It is another chapter in my life that made me who I am today. It didn’t destroy my daughter nor my two sons but it changed all of them. Rather than adapting and changing to the circumstances I let it almost destroy me and that failing affected everyone but especially my two boys. For allowing myself to be consumed with anger and guilt and confusion I ask for forgiveness from my children and their mum. I should have been stronger when my family needed strength. I should have been more loving when my family needed love. I should have been looking in when I was always looking to get away from the heartache, and the constant reminder of my failure as both a father and a husband.

There is a wonderful book called ‘Johnathan Strange & Mr Norrell’ written by Susanna Clark. Its about the forgotten lore of magic and its resurgence and I highly recommend it. The main premise is that a rich mans wife has been stolen away by a fairy. She spends her real life catatonic, but in the realm of the fairies she is forced to dance constantly, unable to leave the ballroom. My daughter spent years in that ballroom, constantly dancing but travelling nowhere until eventually she found her way home to her family. If my daughter can continue to travel that road and keep fighting, then the least I can do is travel with her for a bit longer.