The show must go on...
Or so I have told myself a bazillion times over the last few days.
Christmas is such a bittersweet time. There is all the usual joy that we get at Christmas time, the joy of being with friends and family, good food, good drinks, good presents, and just generally a really good time...
But it sucks... it sucks so very very much and it hurts in ways that I cannot even begin to explain, and the presents and the family are the worst parts!
The presents... well, like I said in my last post, there is the horror of trying to buy something that doesn't come from the baby section but is developmentally appropriate for our developmentally delayed child and knowing that you looked at all those same toys this time 12 months ago.
Beyond that, there is the family aspect... I have a nephew who is only a few months older than Nicola, and every year we buy gifts for him and every year he develops and he grows and he moves through milestones and we buy suitable gifts, smiling and trying to be happy and ignore the hurt that our child isn't doing that.
I don't begrudge my brother and sister in law their 'normal' child, not at all. I love him dearly, I love them all dearly, but sometimes it just really hurts that something that is so mundane has been snatched away from me and I just can't get it back again.
Now, add to that the additional pressure that this year had to be extra perfect because I have this nagging little voice in the depths of my mind who keeps trying to rain on my parade... and no matter how hopeful and positive I am, this little voice grounds me and tells me that this may be our last Christmas together as a family.
My daughter has cancer.
My daughter has a rare and aggressive cancer that has spread widely through her tiny body.
I look at it, and I can't see it, but I can see the affects that it is having on her, and I hate it, but it also makes me more determined to make the most of every minute.
So, naturally, seeing as how I wanted this Christmas to be the most spectacular Christmas we have ever celebrated, I ended up as sick as a dog and have spent the last week on the couch, huddled under a mass of blankets and watching kids tv because I couldn't find the energy to get up and turn it away from Dora the Explorer.
Yesterday I emerged from my hidey hole in my blankets long enough to tell my family that if they wanted anything more than what was already in my pantry or my fridge (which pretty much meant olives, gherkins, an abundant supply of chips, mixed nuts... well, you get my drift) then they were on their own.
So our Christmas was far from the splendid sumptuous feast that I had anticipated... we didn't bake in preparation, we didn't decorate every inch of the lounge, we didn't sing Christmas Carols until the old scrooge next door complained... we didn't do anything I had wanted to do...
But we had a good day.
We had the love of family and friend, we were all together, and we had a good day. Thanks to my Father in Law, the girls 'Santa Claus Wish List' was fulfilled... they spent the day eating chips, lollies, icy poles and junk that they would never normally eat, and they had a ball doing it.
Nicola spent most of the day sleeping. Things seem to be really taking it all out of her at the moment. She is having a bad reaction to some of the chemo drugs and has developed some respiratory distress. Her pain seems to be finally under control as they have increased her pain relief in a huge way, but her anxiety is escalating out of control because of the increased level of medical intervention we are dealing with. And just because today she decided she needed a bit of extra attention, she woke from her midday nap with a massive allergic reaction to something and her face was all puffy and swollen and covered in a big blotchy rash.
It wasn't the grandiose day that I had anticipated, but even with misadventures, illness and random issues, it was still a great day...
And now it is over.
All four little princesses are tucked up in their beds, snuggling into new presents, and dreaming of their joyous day...
And I resume my vigil, watching. Watching her move, watching her breathe, watching her sleep.
I hope you have all had a wonderful Christmas, hopefully a lot more straight forward than ours... I hope that Santa was kind to each and every one of you, and I hope that our Christmas' have been filled with love and laughter.
Merry Christmas to all... and to all, Goodnight!