Saturday, June 23, 2012

One Of Those Days...

You know those days?

The days where everything just seems all too difficult... Far too real...

The days where everything is just too much, and no matter how hard you try, you just can't understand it, and you don't really want to because... well... because it all just sucks!

Today I am having one of those days.

Today I am having a day where I just want to crawl under a rock and hide from the world, but I can't.

Yesterday we got the phone call that Nicola's 'wish' is being granted.

It took us a long time to actually apply for Nicola's wish. We had always known that she would be granted a wish because Costello Syndrome is considered a life threatening condition... but as I have said previously, a wish being granted because of genetic lottery is a far cry from a wish being granted because your child has a likely terminal cancer.

By the time we got around to it, we were told that Make A Wish had closed their books and would not be granting further wishes.

A while later, we were contacted by Starlight who advised us that they would grant a wish for Nicola. They were somewhat limited in what they could do, but they could give her something... the question was, what would we wish for for her?

We sat down and we thought about it... we thought about it over many weeks... and finally, we realised that there was very little that we could really 'wish' for for Nicola... so instead, we looked at her bucket list.

Her bucket list is something that we started looking at after the first round of chemo didn't work as well as we had hoped. It was just a list of things that we thought every little girl should be able to enjoy at least once in her life, no matter how short that life may be...

And one of the things that we thought should be on there that we couldn't grant was to be able to 'play in the snow'.

Yesterday they told us her 'wish' was being granted.

At the end of the second week of the school holidays, we are flying to Melbourne for a few days, and we will be doing a day trip to the snow.

Yesterday it was all big and exciting... it was a holiday, some fun to look forward to, a bit of a thrill for all the girls...

Today... well... today it's just all crap.

I woke up about 3am this morning and laying there in the darkness, just staring at the ceiling fan it struck me.

This wish was applied for because Nicola has stage 4 cancer.

It is being granted now, as quickly as possible, because we have been told not to wait.

Don't delay anything that we want to do, do it now and make our memories while we can.

The girls are so excited, they are telling everyone who will listen that they are going to Melbourne! They have even already started to pack...

I can't blame them for being excited. As a family, we have never had a real holiday together, at least, not without hospital admission being involved.

At Easter, for the first time ever, we went away for a long weekend without Nicola going into hospital. We went to Airlie Beach with Camp Quality for Family Camp. We stayed at Club Crocodile, ate in the restaurant for three meals a day, and did some exciting stuff like a cruise out to the most beautiful beach in the world and other little things... and it was great, we all had a lot of fun, but we were also surrounded by constant reminders of why we were there.

Every family there had been touched by cancer. There were children in active treatment, there were children in remission, there were children who were No Evidence of Disease... and there were parents who had lost their precious ones to this disease.

Easter Sunday morning, after we had had breakfast and while we were waiting for the Easter Egg hunt, Jessica came up and asked me when Nicola was going to go to hospital. When I told her that Nicola wasn't going to hospital the confusion on her face was clear.

Every holiday we had ever had involved an admission... until then.

Now, they have a taste for it. They have a taste for fun, they have a taste for adventure, they have a craving for the little bit of normalcy that other children in their classes seems to get that they have missed out on...

Which is why they are so excited about the thought of another holiday, another big adventure, full of family fun and love... and NO HOSPITAL!!! But seeing their exuberance just hurts that little bit more.

It hurts because they have been so deprived of something that is so normal, they are getting so excited about such wonderful adventures... and it hurts that they have been deprived because we have always had to put Nicola's health and her needs first.

Now, when we finally get to do something so simple, and so fun, there is this whole undertone... this horrible knowledge that only I have that we are doing this because of really yucky circumstances.

Yet, all I can do is smile and try to act happy. They want this, and really, they need this. The girls need to do this together, they need to experience these little parts of life, to have fun and to make memories...

Memories that will, hopefully, last them a life time, because sooner or later the day is going to come where all they have left is these memories that they make now.

So all in all, today, seeing their happiness, and knowing what I know, it just makes my heart hurt.

All in all, today has just been one of those days where reality is just all too much.


Alice said...

Love you Jo!! <3

Sue P said...

Every word you write rings so true - I can't imagine your pain - take care of your heart x

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