Thursday, 19 June 2008

19Jun08 - Is it really?

There are certain phrases that people use to explain their lives and why things turn out the way they do; "Everything happens for a reason", What will be will be" and "It is meant to be". I have been one of those people most of my life. My philosophy was always, "everything will work out in the end". I believed that, all the time Lucy was in hospital and unfortunately for the first time in my life it was not true. I can even remember relying on this in the delivery suite when everything was going wrong. I have had to re-evaluate my outlook and curb my optimism. I can appreciate better that when you open your eyes to the many terrible things that happen in life, the outcome is not always for the best, things don't always work out. You only have to watch the news or look around, bad things are happening all the time and there is often no sensible reason. I know that there are so many positives about Lucy's life and I also know how she is changing peoples perception and experience. In her own way she is educating the world and illustrating through her very existence that disability is not to be ridiculed but to be admired. She is also a beautiful little four year old girl who brings a lot of happiness. However I still struggle with my old normal self. The same old questions are ever present. Why...., why....., why.....? How could the outcome have been different? By asking these questions am I disrespecting disability and its origins? I guess what I battle with most is faith. Lucy has undoubtedly got a big part to play in our society and nobody could convince me otherwise. I would not be without her, she is such a massive part of my life and I love her more than anything. I just can't help feeling how unfair it is that she faces the challenges that she does. There are so many unanswered questions and no matter what happens they will always remain unanswered. Is it fair that she can't talk, is it right that she can't run around and play with her three year old cousin, is it ok that we can't help drawing comparisons between how she is and how she should be? The one question that concerns me more than any other is this, "Will I be asking these questions until I die?" The future is not somewhere that holds hope and expectation. It is a place very much like now, no changes, the same questions and no prospect of improvement. Motivating yourself to be different and to alter your outlook is a difficult thing.
All I know is that Lucy is my daughter and I will be there for her for as long as she needs me regardless of my own personal failings. Lucy plays a central role in our family almost by default but at the same time she is treated as normally as possible. The fact that life is different is circumstantial and I know we share this life with so many other people. I think that I will always feel that she deserved so much more and that we are all missing out in different ways. Lucy is amazing just as she is and will always carry on regardless. Maybe I need to take a leaf out of her book and open my eyes more to the different world around me. I simply can't help picturing what she would have been like, how she would have sounded and how nice it would have been to see her running around and talking. The question "Why" has no answer.


fairenuff said...

I KNOW Lucy's care is so much more involved and 24/7 than Bethany's, but when Bethany asks why she has a poorly liver and other people dont we explain it like this... "Some people have diabetes, some people need glasses, some people have bad backs, some kids dont get attention from their parents and dont have lots of fun. Everyone has one thing or another that they see other people don't have and it's all relative. If you've only ever had a toothache then to you a toothache is a terrible thing." People often ask us how we cope having a child who needs a liver transplant but I feel totally blessed, as you have said many times with Lucy, to have such a special child.

Personally I think that the answer to "Why?" is there is no reason, everyone is special in their own way and we all contribute a tiny piece to the whole picture.

Anonymous said...

when we had laila a nurse in the neo natal came over to me & put her arm around me & said "special children go to special parents"i never understood at the time what she ment!we only have to look how our girls have come on over the last 4years to no that between yourself,dawn & josh you have lernt & still are learning but are doing it the right way.when i question my parenting stills with laila i can only say nobody knows my daughter like paul & i.we will always be learning!but as always we will learn together!hayley.