Well.. we are three days into the new year, and so far, I must say, I'm not really all that impressed.
New Years Day Nicola was so unsettled and miserable that none of us got any sleep. Her breathing is just absolutely awful at the moment, so much so that people coming to my house generally get quite shocked when they hear her. She sounds like she is constantly struggling to breath, her stridor is awful!
The leading theory is that she has vocal cord paralysis from one of the chemo drugs, which is affecting her breathing, her swallowing and her voice.
Her pain is finally under control, or at least, we think so. She still has some moments where she is really unsettled but they are fewer and further between now... but, then again she is on enough drugs to knock an elephant on it's backside, so I'm not really all that surprised.
It's hard to believe that we are now two months into our journey. We are very nearly at the first restage. On the 30th we fly to Brisbane for the MRI to be done to tell us what is happening with the tumor and if the chemo is working.
Looking back, I suspected the tumor before anyone else. I read too much into something her pediatrician said and I went home with the sinking feeling that they were going to find a tumor... and it turned out I was right... but that premonition or whatever it was gave me time to dwell on the news before it was even given to us, a chance to gather some strength before we were thrown into chaos, and I think that was partly what got me through, the fact that I wasn't totally taken by surprise...
But now, in the lead up to her first restage, I have this sickening feeling that they are going to tell me that the chemo isn't as effective as they had hoped. I so want to be wrong, I really do... but I just have this sinking sickening feeling that they are going to deliver another devastating blow and I'm not sure I'm up to it.
In the past three years I've gotten pretty good at hiding my emotions. I've become very adept at hiding what's really going on... put on a brave face, smile and pretend that everything is ok, but over the last two months it's gotten harder and harder.
I keep having what my husband calls 'moments'.
I will be doing something completely mundane and normal and all of a sudden these thoughts will creep into my mind, and I will find myself wondering about the future... and all the things that she may not get to do, and that thought just hurts so much.
Since she was born I've mourned the loss of such a huge portion of her life... but it was never like this. This is like a great big black cloud that just hovers over me, and at the most random of moments lightening will strike and the storm starts to rumble and it's so hard to not just fall to pieces.
There is so much happening it's hard to know what to think and how to feel, it's hard to find a way to balance everything and keep it all in check, but we will have to.
Not for ourselves, not even for our other children, but for Nicola. If she has the strength to keep going, we can't give up.
This is 2012... this is a new start, a new year...
This is Nicola's year.