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.
Saturday, October 13, 2012
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6 comments:
Oh hun, what can i say :( There simply are no words :'(
my heart goes out to you. You have been very brave. I have been through this myself with my beloved Father and I can feel your pain. I know when its a child what I felt goes into insignificance. I am continually praying for you that God will give you the strength to cope with whats ahead. I was praying for you at 2.00am this morning. God bless you all at this time.
I wish I could say something that may give you some reassurance and peace but words just aren't enough ... know you are never far from my thoughts and prayers.
Much Love Bern from Life Love Laughter Ink TOWNSVILLE
You and your child are indeed very very very brave and very very special people. I think Nicola is extremely blessed to have a mother like you, such love, such care, such compassion and such a beautiful way of sharing such a harrowing and difficult time in your life. Thank you for sharing with us, by reading this you have shown us what true love means, what a mother's love means and nicola has shown us what true bravery means. She is in my prayers and I feel blessed to have come across this blog and witnessed true love and courage. All my love to Nicola, u are lucky to have such a wonderful courageous and beautiful child.
My heart goes out to you... I dont have children yet but i couldnt even bear to think of what it would be like for a parent to lose their child. But Nicola is obviously much loved and well cared for by you, she knows you did all you could and even as she is getting weaker she knows your always there to give her comfort.
I've been clicking every day for a couple of weeks for updates but for some reason nothing was showing up in my reader. The last I'd heard was a terrible "Please Pray" FB update.
Finally, I've just put in a search and here I am again.
I'm so sorry to read this. So, so sorry. That dream - it kind of felt like a sucker punch. I knew of course, that you were at this point. But actually reading it - knowing it's HERE. That's different.
I nursed my mother who was terminally ill with Motor Neurone Disease (I'm not comparing. I know it's nothing like a terminally ill child). We always knew of course, where it was heading. MND has no treatment and no cure.
But that moment I realised "we're here. It's NOW. Probably today". Literally a feeling like I'd been king hit.
I can not imagine what that is like with a child. Watching the rapid detioration. I think about you daily. Every single day I think of your family, just not wanting it to be THIS day.
But more - I want her pain to go. With Mum - the decision to move her onto a pump for the drugs- best one ever.
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