Last Night I Had The Strangest Dream...

Well, it wasn't last night, but it was a couple of nights ago...  and the dream wasn't really so strange...  more...  well... I guess it was sad.

I had a dream that we were going on a holiday.  I don't know why, but this holiday was important, it was so important I had spend years organising it...  I spoke to the hotel repeatedly, I made all the plans, I made sure we had a ground floor room that was easily accessible for Nicola's wheelchair, I made sure we had easy access to disability parking for ease and safety of getting her in and out of the car, I made sure the rooms were completely climate control so that she would be cool enough, and I made sure that we were away from any source of noise and we had good blockout curtains so it would be dark and quiet for her, just the way she likes it. 

I spent so long making the arrangements and I checked and double checked and triple checked and then checked some more to make sure everything was perfect.

Then we set off on our amazing holiday...

And when we got there, the hotel was under construction and it was all just a mess.  The parking lot was fenced off and all the car parks had been excavated.  The temporary car park was 5km up the road and it was blisteringly hot outside.  

The only building that had ground floor rooms had been partially levelled and mostly gutted so there was only a bit of a shell left...  definitely not anything that was even remotely suitable for human habitation...

I went to the manager and I was angry.  I made plans, I made sure every plan was perfect, I checked, I double checked, I triple checked and I checked some more to make sure that all her needs were going to be met...

And now we were here, in what looked like somewhere little better than a warzone.   Around us we could hear both deconstruction and reconstruction.  It was swelteringly hot, it was humid, it was loud, it was dusty, it was dirty...  and the only room they could give us had no airconditioning and was on the fourth floor with no elevators.

I argued, I yelled, I swore, I cried...  I argued some more, but there was simply no other options.

It was at that point I stopped and I looked at my daughter and she looked so weak and just so bone shatteringly exhausted, I knew I couldn't fight any more.  All I could do was to find somewhere that I could lay her down, hold her hand and watch her while she sleeps.

When I woke up, I felt so sad, but I also knew what it meant.

The time is coming that I need to stop fighting for my daughter.  There is no fight left that I can win.  

Looking at her now, my beautiful chubby cheeked daughter is gone.  Her chubby cheeks have disappeared, she is skinny and pale and shadowy.  She doesn't smile, she doesn't laugh, her sparkle is just not there any more.  

Most of her time is spent sitting on my lap cuddling, not watching tv, not talking, not playing...  just cuddling.  

She doesn't even want to watch Wiggles or Dora.

Her pain levels have escalated so rapidly that even the palliative care pain team have admitted that we are starting to run out of options on oral pain relief drugs and we may be looking at moving to an IV infusion soon in order to keep her comfortable.

Last week we found out that she has developed a staph infection in her port.  She developed raging fevers and a really high heart rate.  She has been started on IV antibiotics which I have learned to administer here at home, but they think this infection is what is pushing her poor little body over the edge.  

She is declining rapidly, even her doctor is surprised at the change in her.  

Her body is simply struggling and is starting to shut down.

My bright, happy, cheerful baby is slowly slipping away from me.

And I hate that I just can't fight this.