Winter in Perth

Jacket- Topshop. Shorts- Wrangler. Top- Topshop. Hat- ASOS. Shoes- Mimi loves Jimi

Hey guys,

Im excited to post my first outfit from Australia! Its hard to believe its winter over here because the weather is better than what we were getting in Scotland before i left. These pictures were taken on the roof of my friends flat in Perth, it was 21 degrees that day but they think you are crazy for wearing shorts!

I love these creepers i got from Mimi Loves Jimi, im wearing them so much right now, I really want a pair in black too :)

I also really like this little top from Topshop is so handy for wearing with high waisted shorts or maxi skirts, a really good basic to have for the summer!

Ive tried my best to find links to all the items for you guys but couldnt find them all so have linked a few similar items instead :)

Hope youve all been having a nice week. Sorry I havent managed to post as much as usual, ive been busy exploring and settling in over here. .

Nic

xxx 

Palm Beach Dress

Dress- Motel. Shoes- River Island. Necklace-River Island.  

Heys Guys,

I got this dress from Motel just before i went to Thailand, It was perfect for wearing over there at night with sandals! Having just moved over to Australia during winter, im going to have to wait for a bit until i can wear it again but im definitely going to get more wear out of it when summer comes- i love it!

I think i would probably buy this style of dress every print it comes in because it just fits so well and theyre all really reasonably priced. I have my eye on this one and this one too :)

Im hoping to get some snaps over the next few days here in Perth, some of the views are beautiful! My friend and I spent the day in Kings Park today, despite it being the middle of winter it was 21 degrees and blue skys. Although most of the locals complain about how cold it is, theyd get such a shock if they came to the UK!

Nic

xxxx

Squiggle Print Trousers

Shirt- Zara. Trousers- River Island. Shoes- Zara. Bag-Zara

Hey Everyone!

Sorry again for the lack of posts recently, Ive just been getting settled in Australia and getting over the jet lag!

I have a few outfits to show you from when i was back in the UK so will post them over the next couple of days :)

I cant wait to show you guys some clothes from over here! I cant believe its winter just now but still better weather than back in Scotland.

I love these trousers from River Island, theyre my new favourites, you can find them heeeere :)

Hope you've all had a nice weekend!

Nic
xxxx

Reality

I would just like to say...

For once...

Just for once...

i wish...

Oh my, oh how I wish...

I wish that my 'reality check' would bounce!

This week has just been overwhelming, emotionally.

Nicola is having a bad week, a really bad week. She has had bad pain, and because her hemoglobin is also really low she has been pale, lethargic and looking slightly blue around the lips.

She is due to have another blood transfusion tomorrow morning and really, it's just another slap in a week that has been utterly shocking.

Last weekend one of our beautiful dogs was attacked and ended up in emergency surgery (I am indebt to my vet for the next million years!) and seeing him going out our front door, not knowing if I was ever going to see him again or not, it brought up a lot of complex emotions about life and death and Nicola that I wasn't quite ready to think about then and there.

Couple that with the fact that today my sister finally got all the photos from the birth of my precious angel nephew Krist who was born with angel wings back in January...

And all in all, really, I have spent a large part of this week questioning the fairness of life and the justification for death.

This week I was so desperate for a moment of just sheer normalcy, I took Nicola to the supermarket. Instead of taking her wheelchair, I took a stroller, just like she was any other baby in the market that day.... and we had a lovely time... until some well meaning stranger stopped to look at the baby, and with a look of shock on her face said "What's wrong with her?"

So much for my moment of normalcy!

All week we have had snow stuff coming in dribs and drabs... and given that we live in the hot and humid tropics, that is about as 'normal' as sardines on a cheesecake.

Then, finally, we finally got our itinerary for our trip away, it all arrived in the post today.

If we had ever wanted to try and pretend that this was just a normal family holiday, our 'travel pack' has made that impossible.

Our itinerary arrived inside a purple zip up Starlight case, inside a purple Starlight backpack, accompanied by flashing Starlight wands, Starlight wrist bands and even a Starlight disposable camera.

Everything was a blatant acknowledgement that this is not just a family holiday, this is something organised by Starlight.

This is because our child has cancer.

We are looking at what we need to pack for this trip... Once upon a time, before I was thrust into the world of special needs, I would have chucked some clothes into a suitcase and we would have been great.

Now, I need to pack 30+ syringes per day... plus a dozen different kinds of medication. Because, unlike my other children, she is unable to eat orally, I need to pack all the supplies to ensure that her nutritional needs are met. I need to pack her blankets, her dolly and her elephant, otherwise bedtime will be a complete disaster.

Then, on top of that, I need to ensure that the airline is prepared to deal with her wheelchair. Because we have a stop over in Brisbane, we have to ensure that her wheelchair is available during our stopover as she cannot be safely carried and she cannot be seated in one of their stock standard adult wheelchairs.

We need to ensure that the appropriate tether straps are aboard the aircraft for her child restraint. As she is over the age of two, CASA requires her to hold her own ticket and occupy her own seat, but as she is unable to sit unaided, she has to be in a child restraint... which is why we have to fly Qantas, no other airline will accept her child restraint.

But then, once we get there, everywhere we go, we are going to be the 'Starlight family'.

And to be honest, I think that is one of the things that I think will bother me the most.

If everywhere we go there is that look in people's eyes, that look that says "I know who you are and I'm sorry" I am going to go utterly crazy!!!

I am struggling enough with putting on a brave face for this trip, with being positive and keeping happy so that my children think I am happy... but the first time someone looks at me with that look, it is all just going to dissolve into a horrible mess!

So right now, tonight, I am wishing that just for once my reality check would bounce.

I am wishing that I could look beyond all the negative connotations and all the hidden innuendo's and just enjoy the fact that this is going to be a brilliant family holiday!

I am wishing that just for now I could really truly enjoy everything on it's most simplistic terms and not get caught up in the details.

But, sadly, details have become my life.

I will sit down and work out how many syringes I need, including a safety buffer, and I will find a way to pack them. I will pack her medications and I will deal with the airlines. I will organise her feeds and I will probably spend our first night down there cooking and pureeing so that she has what she needs for the time we are away.

I will go through this trip with a smile on my face and a camera in my hands, recording every moment for time to come so that one day in the future we can look back and remember the fun, the happiness and the togetherness...

Yet, every step of the way there will be that little voice in my head, whispering to me.

How am I supposed to ignore it?

What do YOU think??

I guess this is kind of a different post to what I usually write. Normally I write to clear my head and store my memories for later so I can come back to them. Normally when I write I don't expect a response, I just want to write for myself... but tonight is different.

Tonight I am calling out for opinions and ideas... on what I should do with this dress.

This dress has kind of been dubbed 'the dress of doom' in our home.

The first time Nicola wore this dress was when I got into a heavy disagreement with the local Neurosurgeons. The plan, since the VP shunt was put in when Nicola was 1 year old had been to wait until she had recovered from the surgery, give her 6 - 12 months to stabilise and then block the shunt because they didn't believe she was shunt dependent.

6 months after having the shunt put in we found out it was over draining which caused a massive 1cm thick subdural haematoma (a massive blod clot) that covered the entire left side of her brain. This is what caused the muscle spasticity and wastage on the right side of her body, something she has never recovered from. We dialed the shunt back to basically nothing and the subdural haematoma cleared up.

12 months later when everything was as stable as it was going to get with the shunt in, we broached the subject of having it blocked off, which was the original plan... and the local Neurosurgeon made it clear that he never really entertained that thought, he just told us what we wanted to hear.

Well, I was NOT an impressed Mumma, to say the least!

Fast forward a little bit, to the second time Nicola wore this dress.

It was a straight forward, couldn't possibly have anything go wrong because it's just a quick review, appointment with her cardiologist. We had done the holter and the ECG and I fully expected for everything to be smooth sailing, come back in 6 months, kind of thing.

He told us that the Hypertrophic Cardiomyopathy had gotten slightly worse. The pressure gradients in her pulmonary valve were increasing again. The PFO (hole in her heart) was definitely NOT going to clear up on her own... oh, and to just make it peachy... she was developing an arrhythmia. While none of it was yet severe enough to be concerned about, especially given her shocking response to her last round of heart surgery, it would need to be watched closely.

Slap, slap, slap, and slap.

Finally... and this is the ULTIMATE kicker...

This is the dress that Nicola was wearing the day we found the tumor.

This dress has not been on her since. I will NOT allow Alyssa to wear it. I will not even allow it to go into the baby doll dress up box.

I don't feel that I am able to pass something with such negative karmic connotations on to another person. I cannot give it away. I cannot give it to charity. I don't even feel completely comfortable throwing it in landfill in case someone, somewhere, gets the idea to pick it up, take it home and wash it.

So, I am left with one option.

I need to sacrifice this dress.

I must admit, given the number of negative experiences we have shared with this dress, I cannot help but feel a little shimmer of excitement at the thought of ripping this dress into a thousand pieces, or setting it on fire and screaming "BURN BABY BURN!!!" (while the children are at school of course, because I couldn't possibly get away with doing that in front of my fire conscious 6 year old!)

But, I'm not entirely convinced that either of those things, as satisfying as they may be, would do true justice to the amount of ill will I feel toward this dress and everything it has brought upon my Princess...

So...

I ask you...

What should I do?

What is going to be the best way to sacrifice this dress?

Naturally, it will involve a party! Everything at the moment involves a party... but what should we do with this monstrosity before we celebrate?

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.

Silent Smoke

Leggings- c/o Lovellysally. Top- Zara. Bag- Zara. Shoes- River Island. Necklace- Thailand

Hey Everyone,

I had to show you these amazing leggings that the amazing people at Lovelysally sent me the other week.

 I loved my Majestic horse leggings so much (posted previously) so was more than happy to welcome the Silent smoke leggings into my wardrobe too. I actually wore these to Rockness the other weekend and had so many people ask where they were from!

If you havent visited their site already i strongly recommend it, so many cool pairs of leggings to chose from! (visit it heeeere)

On another note Ive put some things up for sale on Shop Nicola Claire in preparation for the move! Parting with my clothes is such an emotional affair but quite theraputic at the same time although i KNOW i will regret getting rid of a few things at some point or another, i always do!

Hope you've been enjoying some nice weather today too.

Nic

xxxx