childhood cancer

childhood cancer

Sunday, October 9, 2011

Alternative normality

All told it has been a good weekend. Luke has been on good form, if somewhat demanding of attention! He has certainly got used to being front and centre of everything all the time, and is quick to let us know if we aren't paying him enough attention - and who can blame him! Generally speaking, as long as someone is playing with him, he is happy. Before becoming ill he had begun to be able to amuse himself for periods of time, which has all gone out of the window now.  But that's ok - we want to give him that attention, and its really rewarding to get his beaming smiles in return.

In terms of the question on my mind when I wrote last night, having looked through some of the messages we received and discussing it with my wife, it feels like we perhaps had false expectations. I don't know that anyone gave us false expectations specifically, or whether we just didn't hear the message clearly enough, but our expectation of life going forward was that it would be 'normal' with a few restrictions. We had mentally adjusted to that, but have fast realised being back at home for nearly a week now, with another week to go before the next planned hospital stay, the next year or so will be a different kind of 'normal', with a few vestiges of our old normality to look forward to.  We are I think in the process of adjusting further to that reality.

There are certain sacrifices we find ourselves having to make at the moment, most of which really aren't significant or important.  We decided today however to bow out of doing readings at the wedding of a couple of very good friends next weekend.  We have already bowed out of the wedding breakfast and reception, unfortunately, as we wont be able to take Luke and cant really be apart from him for that period of time.  We still fully intend to be at the wedding ceremony, but feel on such a knife edge with Luke that we don't want to put our friends in a position of relying on us for even a small part of their special day, and us maybe not being able to deliver.  They are the kind of great friends that have shown complete understanding to us, and we truly appreciate that.

I think going forward we will lower our expectations, focus more on what is absolutely important and worry less about what is, in the grand scheme of things, less important.  That is what I should have been doing anyway, but you'll forgive me if my mind is a but scrambled at the moment.

I mentioned a couple of days ago that I had, in the course of researching childhood cancer, made one or two small donations to charity.  They really were unfortunately amounts which are unlikely to change anybody's world, but for now our financial resources need to be very carefully managed, as the coming year is going to be difficult in that regard.  I also mentioned that by clicking on the occasional advert on this blog site, small amounts of credit build up which we will receive, which we could use to help related causes.  The amounts are small, but a quick thanks to those who have been doing so.  It will all add up.

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