Monday, 14 July 2008

14Jul08 - This Life

I have been writing this blog for nearly a year now and I often feel like I can't really express what my life is like because of how it may be perceived. There are so many people out there who could legitimately say to me how lucky I am that my daughter is even alive. I have seen parents who have left the hospital with nothing but despair. I know parents who have lost and would gladly swap places with me. Does it help? No and it never will. No matter how hard or how tragic your life is there is always someone who is worse off. Whether it makes you feel guilty for your own feelings or not it will never make it any easier. We have been dealt a hand that thankfully the majority of parents will never receive and I just wish that I had the strength to appreciate what I could have lost. The problem is that I am weak and I cannot help thinking about what could and should have been. Nothing I believed in came true. The aftershocks four years on seem to gain in strength rather than diminish. The life changes continue and there is no way to stop it. I used to think that I was a strong person and that I could ride any storm. I realise now what a fool I have been and that I do not know how to. I wish there was a place you could go to find the answers, I wish I didn't have any to find but I do and there aren't any. You feel inside that you are still the same person, the same happy, hopeful, optimistic, easy going and lighthearted person that thought the world was a great place, but outwardly none of these traits are evident or seem significant. They have been suppressed so deeply that they only ever surface when you are off guard and forget reality. It worries me how much the changes affect every day life and how different I feel. Acceptance feels like an unattainable holy grail and the quest for it a fruitless challenge which can only deliver more guilt.

I want to be the type of person who can see through the injustice and the "normal world" perspective but at every turn the challenges are too great and I endlessly fail. The dissatisfaction in my own ability to rationalise is immense and my inability to recreate a normal life is ultimately destructive. It always comes down to the question of blame. It shouldn't but it does. Was it me? Is there something I could have done differently that would have changed the outcome? I could have realised sooner that all was not okay. I could have insisted that things were going wrong and I could have made people take me seriously. In reality I was a lemon, a spare part, a spectator that just watched from the sidelines and accepted that I could not change what was happening. Although when I look back I know that I knew it was wrong but I foolishly trusted the system and let what happened happen. I will pay for my own inadequacies for a lifetime both before the 30th May 2004 and after. I can draw no comfort from the fact that I could not have been prepared for what happened because presented with it I could have done something. Neither then, since or now have I been able to make it right and I don't suppose I ever can. Life is different now for all of us and in our own ways we continue to suffer. What I can't work out is are we the same people endlessly cursed with trying to come to terms with a single unacceptable moment or has that moment changed who we are and how we think forever!


Nicholas' mum said...

I don't think anyone who isn't in our little world of have having a child with special needs will fully appreciate how hard it is coming to terms with a life time of heart ache for our children. Most families have problems and difficulties which can be resolved so they can move on. In our cases our childrens needs and problems aren't going to go away.
So many times people say how well we cope with having a child with special needs and we, well I, just smile and say thank you. But they don't see the endless tears that have been cried greaving for our children or even have an idea of how much time we spend caring for our children.
I think it's when you hear pity in peoples tone of voice or even when you see it in their eyes, that it really upsets me and I think how unfair it is that my child has these difficulties and that he is ''pittied''. I don't think people realise how badly it effects us when they do this though. It brings you down to a place where you've been trying to get out of and it reminds you how unfair life is for our children.
The alternative of people saying that I am not coping would make me feel worse so it's just so much easier to smile.

Nicholas atending Fairfield school was the best decision we ever made.
I feel surrounded with people who have an appreciation for life and know exactly what you are going through.
It gave us a sense of belonging which is so hard in the world that we live in, but I guess we have to find those few places where we feel accepted where we can feel normal again and enjoy our children the best ways we can.

Our children aren't going to be children forever and as they get older we will be faced with more worries, but for now I try to make the most of now and love Nicholas the best I can.

Take each day as it comes and we'll all deal with the future together, because all parents need other parents to talk to or share experiences.
See you both in Lucy's classroom

Neeky's mummy.

Anonymous said...

It's hard to answer that or try and say nice fluffy things to make it seem better, so I won't. I suppose after good happy times which you seem to have had lately, the reality just sinks in again with a thud.
All I can say is that we, and I'm sure I speak for all your friends and family, will do anything on earth we possibly can to help in any little way. If only it could be more.

the VHs

Neil said...

Thank you for your thoughts Lyndsay. It is always comforting to know that other parents experience the same feelings and emotions. It helps to make sense of the self inflicted guilt that we all must feel. You are so right about Fairfields, it is a little oasis where for a short time each day we can escape the abnormality of "normal" life. Have you thought about writing your own blog? I think you would be very good at it.

Neil said...

Thanks VHs it is nice to have family.

Anonymous said...

I read the blog a few hours ago and it has been weighing on my mind since. i know there is nothing i can to say to cheer you up - I have seen how your lives have changed in the last 4 years and I know they will carry on changing but I also know the love you both have for Lucy and for Josh will keep you going however bleak life feels sometimes. You will always have regrets and maybe never come to terms with how things have turned out but I really hope you won't have any regrets about how hard you have worked to make Lucy's world a better place for her to live in and the valuable lessons Josh has learnt from you which have made him the caring boy he is .Maryxx

Anonymous said...

One of the hardest things for parents as you know is seeing your children suffer in any way and not be able to fix it or make it better. All we can do is be there for you if we can, however & whenever you need us.
Love you all
Mom & Dad xxxx