Trying to make sense of it all

2006-04-22T13:23:00.000-07:00

I have been meaning to start posting on this blog for days but never seemed to have the time or space to get my thoughts together. I know what I want to say but how to put it into words? That is when it gets tricky. Well, Paul is away today, this children are all in bed, the toys put away and dishes washed and I have a bottle of wine open and some remaining Easter chocolate so what better time to try?

The main blog is where I post all out news about William and I often include immediate thoughts about how we are all affected, both negatively and positively by the experience of his condition and treatment. These kinds of thoughts are at the surface and can not be separated from the day to day events. Lately though, I have been thinking about how all this impacts on me at a deeper level, making me who I am. It has certainly changed me in such a huge way. The most overwhelming thing for me is that, if things do go really badly for William, and I hope and pray several times a day that they won't, I need for there to have been something positive to have come out of it all, for me and for others. I need there to be something lasting that will live on, whatever happens. As a Christian, I have found myself questioning why this path was chosen for me and what I should be doing with it. I have found my spirituality deepend as explore these questions. In part, this is because I have had to call a halt to the career ambitions and full time work that occupied so much of my time and energy, giving more for my children and also to be still and quiet and really think and evaluate who I am and where I am going (the scanty of social life due to William's dependence on me also helps with this kind of time). I wanted to keep this as a companion to the main blog, rather than incorporating it because it won't interest everyone and I will explore the spiritual stuff here. This is my background and framework and readers (I hope there will be some) won't all share them. I'm not wanting to force ideas on people and hope others can take some of the this and apply it to their own beliefs. Why share this at all? Well, that takes us back to my need for something good to come out of it. If one person is finds this helpful to their own situation then that will have happened. My friends have always told me a wear my heart on my sleeve!

To understand how all this has changed me, and for the better, although I would rather the vehicle for this change hadn't had to involve my little boy suffering, I have to explain a bit about what I was like before. I loved my girls to bits and would do anything for them but I was ambitious and worked very hard. I was a single parent and was able to provide well for them but didn't always give them the time they needed whenever they needed it. Since William has been so sick, I have had to give up full time work and am always there (apart from when William is in hospital) to take them to and pick them up from school. I would never go back to missing this time with them. Of course, I am no longer a single parent as I am now with William's Dad Paul. However, I am still financially responsible for the children and the roof over our head as Paul's career as an opera singer does not enable him to contribute to that. Once upon a time I would have panicked at the loss of a good income in this situation but when I made the decision to give up full time work I felt a strange peace with myself. We have had to make changes to live on the lower income but all of these have been good for us. We get out more and enjoy free parks and museums, we eat better as I have the time to cook in bulk with cheaper ingredients, we have less material junk in the house... We make the best of every single day because we need to make the best of the time William is home from hospital and we need to make sure we have as many happy memories of the time we have with him to keep us talking about him and laughing about him for the rest of our lives if we need to.

So, what about the spiritual stuff. This is where it gets wierd. When I was a teenager, we had a mission at our church. The team leaders were Edmund and Jean, a gentle and spiritual couple, approaching retirement. Following a meal with my parents, Edmund placed his hand on my Mothers shoulder and told her, right out of the blue with no prior conversation to act as a cue, “Your daughter will never be happy until she has found the peace of God that will come when she has a child who is fully dependent on her” At the time I was a rather unsettled teenager, striving to be the very best at everything but not exactly as happy with myself as I could have been. Mum never told me about that until one day in the hospital, just after Christmas. I had just decided that I was going to have to give up full time work to look after William and was telling her how strange it felt because I wasn’t worried about how we would live on a low wage or how everything I had worked towards had been blown away. Instead, I had never been more at peace with myself. My hairs stood up all over my body.

William and I had been regulars at the hospital chapel and had become very close to Christine, a wonderful chaplain with an air of calm and serenity. That week was the story of Jesus being presented at the temple. She shared with me how she had had William and I on her hearts while preparing for the service. When I told her about the prophesy, she added that “this was my gifting.” Simeon told Mary of Jesus’ suffering and death and she had to carry that prediction and it is described as something that pierced her soul. I can relate to that kind of pain. Sometimes thinking what William may have to go though and how it could all turn out caused a real physical pain. On that day in hospital, I began a journey. I am listening to see what God wants me to do next. I know He wants me to use this in ministry for Him, but I don’t yet know how or when. I have been reminded of someone who inspired me greatly when I was young. Joni Eareckson became quadriplegic following a diving accident at 19. God has used her in such tremendous ways and she reaches people in ways she would never have done able bodied.

I hope I haven't lost anyone with all the "God stuff". It won't be all I discuss here but it is an important part of my journey with William. As I said before, it isn't for everyone and you won't find this in the main blog.

Anyway, that is by far enough waffling for tonight...

My Journey With William - A Deeper View

Trying to make sense of it all