Good Intentions

You know, I start every day with hundreds of good intentions...

Yet very rarely do these intentions ever seem to actually make it to fruition.

Sunday morning I woke up and I had so many good intentions.

I intended to make a hot cooked breakfast for my children...

They had Nutella on toast - with sprinkles.

I intended to pull out my boxes of fabric and set up my sewing machine...

They're all still in the closet in Alyssa's bedroom.

I intended to sort through the box of barbies in the toy room...

It is still sitting untouched.

I intended to catch up on the washing...

I am still at least three baskets behind and the folding still hasn't left my bedroom.

I intended to mow the yard...

Well... that intention has been unmet for so long that I am pretty sure a tribe of long lost pygmy's have taken up residence!

Fast forward to today.

I intended to unearth the dining table...

It is still buried in random children's stuff.

I intended to mow the yard...

Those pygmy's are still going strong and their grass huts are looking great!

I intended to bake some nice healthy cookies and muffins for the girls for school...

I made a pineapple cheesecake and then called it quits.

I intended to mop the floors while the babies napped...

I curled up on the couch with a hot Milo and Judge Judy.

It seems that every day I wake up with all these great intentions, all these things I want to do, yet I just never seem to find the time to get them done.

There is always something that ends up distracting me.

For instance... today...

I came home from taking Jessica to school and dropping off the goodies for the bake sale... I had to give Alyssa some breakfast.

I opened the pantry and took out the cereal, and I remembered that I needed to pour the coco pops into an airtight container.

I opened the container's cupboard to get a container and I remembered that I had to put lids on all the containers that the girls have raided to use as storage for little toys.

I took all the lids and went into the toy room and pulled out some containers of little toys and found Isabella's left over toast from breakfast which reminded me that I had to feed Alyssa.

Fed Alyssa and took her empty bowl to the kitchen which reminded me I had to unpack the dishwasher. Went into the laundry to unpack the dishwasher and realised that I hadn't yet run the washing machine.

Went to the two bathrooms to gather up dirty laundry and remembered that I found two leaking taps on the weekend and needed to put in a maintenance request.

Phoned maintenance to report two leaking taps which reminded me that I had to phone Centrelink.

Well, that just wasted an hour of my time and accomplished nothing!!!

Got off the phone and it was time to put Alyssa and Nicola into bed for naps... which involved making bottles, giving medications, changing nappies, giving tube feeds, and going through a whole ritual with Nicola that is just phenomenal.

At which point Isabella was quiet eating her sandwich and watching Dora and wasn't having a non stop conversation with me and Michael was sitting down working out medical requirements for Nicola so we can place another order for consumables... so what else was I supposed to do?

I stole 30 minutes of peace and quiet, turned on a really lame tv show and curled up on the couch with a hot Milo.

Then Isabella finished her sandwich.

I intended to sit down with her and read a book or do some colouring or do something else that was dedicated to just her... but she wanted to play with her My Little Pony's and I wanted to do the dishes...

Then Alyssa was awake and needed lunch, so I got her up and took her into my bathroom to change her which reminded me I needed to empty the rubbish bin in my bathroom.

So I grabbed the baby and the rubbish bin, put her in the toy room and took the rubbish outside which reminded me that I needed to refill the dog's water and food...

So I came back inside with the dog bowls, and dropped them in the sink to wash them which reminded me that I still needed to give Alyssa her lunch.

I made her a quick Vegemite sandwich and put her in Nicola's giraffe chair to eat it, which then naturally reminded me that I had to put the rest of her equipment away because I was sick of kicking the walking frame every time I walked past...

So I started putting equipment in Nicola's room, which reminded me that I needed to move the last few boxes of consumables out of there so I didn't keep waking her up when I needed them...

So I grabbed them to take them into the laundry to put them in the laundry with the rest of the consumables... which, naturally, reminded me that I still hadn't put the washing on.

At which point I realised I was about to be late leaving to drive all the way across town to pick Jess up from school. (Have I mentioned yet how much I LOVE her school!?!?!)

Then a quick trip home, hair gets re-brushed, highland dancing clothes on, and then off to a dancing lesson... which, because it is the end of term, I got to sit in and watch and take a few photos.

Then home again, home again, jiggity jig.

Dinner to cook, babies to bath, books to read, teeth to brush, beds to make and then finally, precious Princesses to tuck in and kiss good night...

I got nothing of actual consequence done today, yet I'm utterly exhausted... It is 8pm and I will probably be in bed in the next hour, after I feed dogs, feed cats, feed fish, feed Nicola, medicate Nicola, lock doors, close windows, put the washing on, run the dishwasher, wipe the kitchen benches, tuck four children in, kiss them all goodnight, fold the washing and make my bed, have a shower, brush my teeth and then finally fall into bed, ready to be awake most of the night anyway...

Then as I lay in bed, listening to every little sound in my house, I will reflect on the day, and I can't help but wonder...

But what happened to all my good intentions?!

Trend Awards

Jumpsuit- Warehouse. Necklace- H&M. Clutch- Capulet. Bracelet- Astrid & Miyu

Hey Everyone, 

I wore this purple jumpsuit from Warehouse to the Trend Awards at the Marcliffe in Aberdeen the other night, apart from the stunning colour, i was drawn to the fact that it makes me look a lot taller than i actually am! Always a deal sealer. 

I also have some really exciting news for you all- I now officially have an honours degree in Fashion Management :) 

Which also means i will be moving over to Melbourne in Australia in the next couple of weeks to find a job in fashion! I am SO excited for it and dont worry I will of course keep up the blogging ! Im flying to Perth a week on Wednesday to stay with one of my close friends for a while and then onto Melbourne. I have so much to organise in the next week and LOTS of clothes im going to have to part with but its a sacrifice i am willing to make. I may end up selling a few bits and bobs on here too so keep your eyes peeled!!

Hope you've all had a good weekend.

Nic

xxxx

Thailand

Hey Guys, 

Here are some photos from my recent trip to Thailand as promised :) 

It really was the best place i've ever been to visit and i still cant get over the fact I got to hold a monkey and feed a baby tiger! 

The only thing is I felt like I wasnt there long enough -there is definitely more i wanted to see! Im already planning my next trip back over there :)

Nic

xxx

For My Beautiful Friend.

So this morning I woke up feeling positive! I had heaps that I wanted to get done today, and given that most of it was baking, I knew I was going to have a wonderful day.

Really? What could be better than baking up a storm of yummy treats with my Princesses? (I mean other than watching them devour copious amounts of healthy vegies cunningly hidden where they can't see them! Bahahaha!)

So while Michael was feeding Nicola and the girls were eating their toast, I decided to jump on quickly and check my email.

I got an email from a very dear old friend, which made my day fantastic for about 30 seconds, until I opened it...

And then it all fell apart.

Her beautiful, precious three year old daughter has been diagnosed with cancer and she emailed me because she needed advice.

In her message, through her words, I could feel her confusion and her hurt. I knew the feelings, I've felt them. I can still clearly remember the feeling of cold numbness with the reality that my child has cancer... but that couldn't be possible... it really couldn't... because things like that don't happen to people like me. We have already dealt with so much and fought through so much and we deserved a break? Didn't we?

My friend is the same. She has already been through so much... she has done the unthinkable and come out the other side. She has had to find strength that didn't seem possible to find... yet she found it and she carried on. She has gotten up every morning and gone through every day... and made a life for her children. Surely after everything that she has been through she should be spared?

No.

And this is what I struggle to understand.

Why is it that people who have already endured so much have to keep on enduring?

Why is it that women who don't want their children, and those who love them so preciously have them taken away?

Where is the line drawn?

What could I possibly tell my friend as she faces one of the most horrible journey's she could possibly ever endure?

What can I tell her to reassure her? To comfort her?

I know from experience that it sent me crazy when everyone apologised to me after Nicola was diagnosed. I didn't want sympathy, I didn't want people to feel sorry for me... I wanted someone to hug me and to tell me it would be ok.

I wanted my friends to hold my hand and walk beside me... even if it was just virtually. I wanted someone to tell me that one way or another, we were going to get through this. We may not keep our sanity intact, we would probably be scarred for life, but we would get through it.

Most of my 'friends' I really wanted to be there instead opted to avoid me. I know... at least two of them have since confessed it to me... because they didn't know what to say. They couldn't handle what had become my reality. Somehow I stopped being myself, and I became the mother of the dying child.

The fact that I was still the same person I was before was irrelevant. They saw a change in me that meant that they were not comfortable with our friendship... in one case, a friendship that had been forged over 15 years, so they walked away.

And I didn't want to do that to my friend, I couldn't.

Instead, I wanted to take away her hurt and her confusion, I wanted to tell her that everything would be alright, I wanted to hold her hand and reassure her that one way or another, she would come through this...

But words failed me.

Instead I promised her that no matter what, no matter when, I would always be there. And I will.

One breath at a time.

My friend's daughter is having more testing early this week to find out how far it has spread and exactly what kind of nasty they are going to be dealing with... so please, spare a moment to offer a prayer for them. I want them to get better news than we did. I am praying hard that it is something that will be easily treated and that her beautiful girl will lead a long and happy life and this will be a mere blip on their radar.

And for my beautiful friend... I know you will find the strength to get through this... you are strong, you are incredible, you are amazing. And we are sending you every ounce of love and hope that we possibly can.

Water Colours

Top- Topshop . Jeans- Zara. Shoes- River Island

Hello Everyone!

I am so happy to be back blogging after two weeks off, its the longest break i've taken in the year Ive been running my blog! 

I had such a nice time in Thailand, i think its my absolute favourite place to visit and i definitely want to go back soon. I've Instagramed a few photos of the holiday but i'll put some in a blog post this week too :) . 

I also spent the weekend away at a festival up in Inverness but now i'm back to business with a back log of nice things i need to show you all! 

Im in love with this top i got from Topshop Boutique just before i went on holiday, it looked pretty with a pair of shorts and sandals but since its not quite as warm back here in Scotland i've worn it with these studded white jeans from Zara - another new favourite of mine. 

I also got these shoes a couple of weeks back and ive barely taken them off, they are super super comfy and not too expensive either! You can find them heeeere :)

I hope you've all had a nice couple of weeks! 

Nic

xxxx

One simple sign.

One thing I discovered after Nicola was born was that communication was something that most people take fore granted. You don't realise how monumental it is when a child speaks to you. I hear a lot of people complain about the fact that their child talks and never shuts up (God knows, I am guilty of it myself when Isabella gets into full chatterbox mode) but then I look at Nicola... and I realise that I will never hear her talk like that.

I will never hear her say "Mummy I love you!" I will never hear her say "Mummy, I missed you!"

She says the word "Mamma" but "Mamma" is a bit like "Station". (Total pop culture reference there! Kudos if you get it! ;) )

Most of Nicola's communication is done with a combination of signs and sounds. It sounds a bit difficult for people to grasp, and I guess to outsiders it would kind of be a bit like taking someone who only speaks English and sticking them in the middle of a room where everyone else only speaks Mandarin and ask them to join the conversation.

But, she can converse. She can even argue with me, and argue she does... often!

But it has taken us a long time to get to this point where we can hold rudimentary conversations with her. I tried for months to teach her how to sign the word "Mother" and she refused to even try, yet she learned to sign "Chocolate" in about 3 nanoseconds.

Even now, her actual signs are limited. Most of her signs are related to either her immediate needs (food, medicine, sleepy, clean nappy etc) or her Squeaky sister and even then most of them are butchered from the original auslan and makaton signs because of her restricted movements.

Tonight, after months and months of trying, we had a communications breakthrough.

Not just a little one, but a massive, huge, momentous breakthrough that simultaneously filled me with the most incredible feeling of pride and joy and reduced me to a total blubbering mess.

Tonight we only have Nicola at home, my wonderful Mother and Sister have teamed up to take my other three children after we had to cancel our 'Unbirthday Party' at the nth hour because Nicola's bloods completely tanked in her tests yesterday.

We took our time having our shower tonight because I didn't have to rush off to cook dinner or anything else for the others. We got to play and tickle and have fun under the water. We got to sit on the floor in the shower and just enjoy some quality time... then, just like always, we got dressed. First the right sock, then the left, then the nappy, then her pyjama top and then pants. We put her tube on, and we got her a clean snuggle blanket from the cupboard, then I handed her to her Daddy and we had a big cuddle and I smooched the heck out of her! She loves it, we do it every night, and it leaves her in peals of hysteria...

I gave her kisses and I said "Nigh nigh Nicola, Mamma loves you."

Then it happened.

One simple sign.

One little movement.

One insignificant little flick of the hand that to anyone else wouldn't mean a thing...

But to me, it meant something so significant, so very incredibly important...

It meant "Love"

That smile on her face, that glitter in her eyes, the way her little tongue sticks out when she knows she's being cheeky... then that flick of the hand... together it means something that no words could ever accurately portray.

"I love you Mamma. You are my world."

A Crazy Catch Up

Ok, I know, this post is so long over due... but honestly, it's just gotten crazy busy here!

There has been so much stuff happening.

First, I know, I owe some results.

We had a long and in depth conversation with the Oncologists last Thursday.

The MRI scans showed that there was no growth in the cancer, which is good, it means that the cancer is being held at bay, at least for now, by the chemo. It also means that her pain is just not being controlled by the copious amounts of drugs that we are already throwing at her.

We have been working closely with the pain team and her drugs have been increased a lot over the last few weeks, and we are inching toward an improvement, but there is still a ways to go.

We have also discovered that she has yet another para-esophageal hernia. For the non medical amongst us... here is a simple version.

She had an operation when she was 12 months old to form a tightened sphincter at the top of her esophagus. This is called a "Fundoplication". This operation nearly killed her. She spent many weeks on life support after the operation with severe complications. When she was 2.5 years old she developed her first para-esophageal hernia. A small part of her stomach was pushed through the fundoplication into her esophagus. She had to have surgery and a redo of the fundoplication to repair the damage. Now, it seems that she has gone and done it again.

So, this is most likely adding to her pain, but it also definitely explains her feeding problems and the fact that she is having problems tolerating meals. So, now, instead of doing three meals a day plus snacks and drinks, we are giving her smaller, higher calorie feeds about every two hours or so to try and compensate for it and to not cause her any additional pain. The hernia is sliding, so it doesn't always affect her feeds, just sometimes... the problem is that we can't tell until she's been fed, so we are instead opting on the side of caution.

Clearly our little princess likes to keep us on our toes!

So yes, although we got some decent answers from the MRI, it also showed there was no reduction in the primary tumor.

We are now basically at the point where there is nothing left for us to do but to 'wait and see'. The recommendation of the oncologists is that we wait out this course of chemo. We are currently in week 27 and we have treatment for 39 weeks, then up to 3 weeks of 'waiting' before we start serial scanning.

Our Oncologist was pretty clear in that anything big we want to do, any plans we are making or anything else we are dreaming about doing with her, we should do it as soon as possible, before we start serial scanning.

Once we finish chemo all bets are off. They have made it pretty clear that we have more than an 80% chance of her relapsing quickly. Once she relapses we need to decide if we want to continue with a second line treatment.

I am not going to go into all the details of that now, we will cross that bridge later... but suffice it to say that between her pre-existing cancer causing genetic condition, the aggressiveness of this cancer and everything else, her odds are not high at all. In the grand scheme of things, when you take everything into account, it's quite possibly down to single figures.

So really we haven't gotten a whole lot of new information, more just a reiteration of what we already knew, and the confirmation that now more than ever we need to make the most of every single precious moment we have.

I posted recently about the Reaching Out With Love fundraising drive that the school my oldest daughter attends was planning to run to help raise funds for Nicola.

The other thing that has happened in the past week was that there was someone who was so very against the fundraising that they felt it necessary to complain to both the Catholic Education Office and the Office of Fair Trading about the fundraising.

Everything was cancelled.

To be honest, when I first found out about it, I felt like it was a very direct attack on my family, like we were not worthy of the help.

It has been something that we have heard a lot since Nicola's birth. She doesn't tick the right boxes so we don't get anything. She doesn't have a condition that people have heard of, so she doesn't need anything. Our circumstances are different to others, so we don't deserve anything.

It was another slap in the never ending series.

The school has since been granted permission from the Catholic Education Office and for a special appeal sanction from the Office of Fair Trading so they can continue the fundraising.

I am incredibly grateful for the time and effort that these people have put into this, into helping my precious daughter, and I am incredibly grateful that they have not been put off by the bitter actions of one person.

Yet again, I have am both blessed and humbled by the community of which I am lucky enough to be part of.

On Sunday we were lucky enough to attend a Family Fun Day hosted by Camp Quality.

Camp Quality is a charity that deals with families of children with cancer. They do some wonderful things, including taking us all away for a 'holiday' over Easter, which the girls loved. But yesterday was just a bit of fun and down time, and a chance for us to meet some new families who are on this journey with us.

I took a few photos of the girls, not up to my usual standards because I was only using my phone, but I wanted to share these two with you.

We have joked several times recently about getting Nicola a little wig to wear, just for fun... clearly purple is the way to go! :D The sparkly silver hat doesn't hurt either! LOL!

And finally... all of my beautiful butterflies...