You know when you are completely exhausted and your mind is frazzled, you do everything wrong, your body aches, you need sleep but wake up all night, your emotions feel like they are on a plateau - you've cried so much it feels like your tears have dried up and you just cant find anything to get excited about? That's me today.

This last week has been so huge. Everyone was on such a high from my sister and (new!) brother-in-law's wedding, and then our world's came crashing down on Monday with the news about Mum. We then had my sister's Post-Wedding-Hen's-Night on the Friday, and said our goodbyes to them as they jetted off to travel the world on Sunday. And now I don't really know what to do with myself!

It's not easy to forget the stark reality that my Mum might not be around for as long as we want her to be. As if the thoughts and scenarios that consume you all hours of the day and night aren't sobering enough, then there's conversations about inheritance and holidays that might be our last with her. On the one hand it seems exciting, to all finally have a holiday with Mum and spend quality time, but then there's the reasoning behind why this may be a possibility and it's like getting hit in the heart with a sledgehammer.

And that's just me, I cant imagine how Mum must be feeling. These conversations make me awkward. (Actually, loads of things make me awkward - with all the hugging over the last week, my stepdad jokes that it's getting out of hand as I normally don't like hugs!).
These aren't conversations you really have with your parents, with the knowledge that this is real. Normally they are of the 'what if' context, not the 'when' context.

As you know from my post last week, Eddie and I are very open with our kids and explain anything they want to know. They know Mum is sick and what the doctors have told her, and we have answered any questions they want to know. Being kids, they mostly don't want to talk about it, and that's ok - they are kids. They're allowed to carry on in their way. My Meisha, bless her big heart, got really upset last week on the way up to Grandma's house after seeing me upset. I was driving and had tears streaming and Olive was screeching in the back seat for me to sing. As you can imagine, I wasn't really up for a sing-along at that point in time but Olive insisted. So I started in with a terrible rendition of Baa Baa Black Sheep.

"No, Mummy! Silent Night!"

So I started singing Silent Night. Which of course, instantly reminded me of being in the Christmas show at school as a child, wrapped in a white sheet with a tinsel halo, singing shyly along to Silent Night, with Mum watching on from the crowd of parents. So of course I get more upset (it's ok, I wasn't so upset I couldn't drive!). And the whole time, Meisha is sitting next to me, sneaking little looks. I tried to stop crying but the more I tried to stop, the more tears fell down my cheeks.

"Ok Mum, now Amazing Grace".

Are you kidding, kid? This is THE hymn I associate with funerals and ALWAYS makes me cry. So Olive is sitting in the back, singing along with me, thinking it's just another car-ride karaoke session and I'm in the front losing my shit.

Poor Meisha. She reached out and touched my hand with her little one and sat in the car, consoling her Mum. As we pulled up to Mum's, her wee face crumpled and she just sobbed. We sat in the car for a good few minutes just having a cry together.

I like to be strong for my kids. But sometimes? Sometimes you just have to be sad with them too.

Tonight I lay with my dear little Olive as she went to sleep. After singing some songs and having a little chat, she turned to me and said, "Mummy. You stopped crying when we went to kindy. You were very brave, good girl Mummy."

I smiled, and said, "thank you, darling."

My girl asked, "Why did you keep crying Mummy?"

I paused, pondering how to deliver the heart breaking news in kid terms. "I was crying because Grandma is sick again, babe. And one day she is going to die. That makes Mummy very very sad."

Olive's bottom lip quivered and a short, sharp sob erupted from her mouth. "I don't want Grandma to die, Mummy!"

My heart ached, and I didn't really know how to continue the conversation. I am always honest with my kids, and I think we shouldn't be afraid of death. So I tried my best to explain this, to my 3 year old daughter - "I know, baby. I don't want Grandma to die either. It's really really sad to think about but you must remember that everyone dies. When it's someone's time, it happens. One day I will die, and one day you will too."

She had tears streaming down her soft cheeks and she said, "I don't want to die Mummy".

This short exchange with my youngest child, who I thought was far too young to understand a situation such as this, has put a little crack in my heart.

Yesterday we received the devastating news that my Mum's brain tumour has grown back. The doctor has told her that without treatment, she has about 12 months left to live her life.

Do you know how fast a year passes? I do. Every year I have a list of things I want to achieve in the next 12 months and I often put them off because of mundane day-to-day crap.
I intend to catch up with people and to save money and to better my health.
I have plans in my head of places to take the kids, holidays to arrange and take with my husband.
I make mental notes to spend more time with my brothers and sisters.
I make lists of things to work towards and things to eliminate.

And more often than not, all of these notes and lists sit around and never get crossed off.

Imagine being told you have just 12 months to do all of those things you wanted to do. It's not enough time.
There's still so much Mum needs to be here for. We aren't done with her yet! She needs to be here to deliver any future grandbabies. She needs to deliver her grandbabies' babies. There's still weddings for her to attend, and parties - 21st's, 30th's, 40th's....her own 60th. We still have so much laughing to do. I still need her to help me with parenting my own babies. We still have holidays to take, and disagreements to have. We still need to take the piss out of her when she does 'old people' things. There are still a million and one hugs we need to give her. There are still so many unsaid, 'I love you's'. There are still recipes to share, lunches to be had. So many sleepovers for the grandies to have. I still want to have sleepovers! So many thank you's to tell her, for the life, love, support, encouragement and faith she has given me and my brothers and sisters.

Only once you are given some sort of timeframe, do you realise all of this. And realise that we need to make each day count. Because all of those little things - when it comes down to it - are the big things. They are what matters. It's not the things we buy, or the hours we spend at work. It's not how we look, or whether we have the latest phone. It's not the car we drive, or the house we live in. It's the moments spent with people we love.

Make each day count. Don't waste time with people who make you feel negative about yourself. Tell people you love them. Say yes to that party - the memories will be with you forever. Spend time learning things from people who can teach you. Give your babies that extra cuddle, even when they're pushing it at bedtime!

Make memories.

This picture is a great depiction of my motivation to start Nevus New Zealand. Don't get me wrong, we have had plenty of support from friends and family, and from other nevus parents via the internet. But when Olive was born, we DID feel very alone. Those early days were scary and lonely, and we felt we had to be the pillar for others to encourage strength and understanding with our little girl. The doctors didn't know much, if anything, and we had to research her condition ourselves and educate our doctors.

A lot of nevus parents feel this way. That those first few days in hospital are frightening and unknown. That they were and are their child's strongest advocate, and that they had to learn how to deal with this change in their life on their own, without a lot of support from medical professionals. My dream for Nevus New Zealand is to not only support the families we are already connected with (and they support and encourage US just as much!), but to provide more awareness so that one day in the near future when the next wee baby is born just like Olive, the doctors aren't as stumped. That they can tell them what the condition is, and to be able to put them in touch with us - a group of people whose lives have also been changed by CMN.

Recently we had our second Nevus NZ family get-together, and with the great turn out, it was evident that we are getting somewhere. We had 34 people attend, 10 of which had CMN. New Zealand has a population of 4.471million people, and if Giant CMN affects 1 in 500,000 we already have one extra person! Not to mention the others who couldn't make it. There are bound to be more people in New Zealand we haven't connected with, and this is so exciting. I love hearing from new families who get in touch, and I could talk for hours with people about all the different aspects of the condition and being a parent of a child with CMN.

Our logo for Nevus NZ is underway, as is the website. I am hoping to meet in June to discuss the set-up of our charity status and hopefully get that underway - once we are registered it will be easier to apply for funding and get our name out there to promote awareness.

Please, if anyone can help, we still need to raise a bit of money. This will be ongoing, but for now the goal is to raise enough to pay for the legal advice, and hopefully a pamphlet run. If you support charities, please consider choosing us. Every little bit is a huge help. We cant do this on our own! If you would like to support us and donate, you can do so here.

Thank you all for your ongoing support. This means the world to me and my nevus family.

I haven't written since we got back from our trip, but not from lack of things happening - more because I rarely get the time! I am so busy all the time, yet nothing ever gets done (how does that even work!?). There is always something to organise with the kids - things for the school gala, or homework, costumes for event days at school, playdates, illnesses, dinners, lunches...or cleaning. Seriously, does the cleaning EVER end?! And yet, even after spending so much of my time doing this mundane task, my house still looks like it's been burgled by a 2 foot ogre tearing the place apart looking for Barbies or Countdown cards, tearing up paper and leaving books everywhere he goes!

And aside from the day-to-day stuff that every parent endures, I've also been appealing to companies for donations or sponsorship with our project Establish Nevus New Zealand. Unfortunately my fundraising efforts are not getting very far this time around, which really is quite disheartening as I just can't do this without the financial backing. Because I am not trained in not-for-profit organisations, I need to seek legal help to protect both the organisation and myself. I am incredibly grateful to those generous backers who have pledged already, and I have my fingers crossed we can hit our target so that we can make this happen.

I have also been organising Nevus NZ's second family get-together, which is happening over Easter. We have had some very generous support with this side of things, and it's looking to be a great day! We are all really looking forward to seeing everyone again, and meeting some new faces.

And on top of all that, we've been starting to think about the little madam's birthday! Olive turns 3 the day before our get-together and she wants a Peppa Pig cake. She also wants a train for her birthday, because that's what George from Peppa Pig gets on his birthday. She won't agree to anything else. I have bought her some presents, and none of them are a train - doh!

Oli has settled in so well at her daycare, and the teachers are all incredibly supportive and aware of my needs as Olive's mum, as far as reassurance etc goes with her. They are fantastic with being vigilant with her sunscreen applications throughout the day, and talk to her openly about her nevus if it comes up in conversation (for example, when we cam back from Adelaide).

Speaking of daycare, I've been meaning to post about a little exchange that occurred there a week or so ago. We had another First that day. I've written about these Firsts before and how a lot of the time they come unexpected. When I went to pick Olive up, she was playing in the water, so I took her into the bathroom to get her changed before we left. Up until now, I hadn't seen or heard any comments from the other children in regards to Olive's nevus.

Being an open plan bathroom with teeny toilets, there was a little girl sitting on one of the toilets. I stripped Olive's clothes off and was searching for some clean ones when the little girl piped up with, "Oh no! Olive has a sore back!".
I smiled at her and said, "oh no, she's not sore honey. That's just how her skin is".
"Whyyyyy?" she asked.
"Because that's how she was born. It's called a nevus. Can you say nevus?"
"Neeeevuuuss," she said.
"Well done!" I smiled again and carried on dressing olive, who was totally oblivious to the whole exchange.
"Why was she born like that?" the girl asked.
"Because she is special. Just like you, and just like me. We're all born a little different and Olive has special skin on her back."
The teacher who was also in the room and listening to the conversation then said, "and I was born with a funny ankle. See?" She showed the wee girl her ankle.
"Oh. Cooooool". She said, still sitting on the toilet.
I smiled, and asked, "Are you finished?"
"Nope!" she announced and went about her business!

It was a funny little exchange, but it was the First with one of Olive's peers. The older kids at school often notice and ask Jaxon or Meisha what's on Olive's arm (her large satellite) which always opens the conversation to talking about her nevus on her back. This was the first time somebody Olive's age had shown an interest, and it was really neat! It was also really interesting how the dynamics changed with Olive. When an older child or an adult asks about it, or we are talking about it, Olive likes to be the centre of attention and will often raise her shirt of her own accord and show people saying, 'see? see? That's my nevus!', but when this little girl showed interest, Olive was completely disengaged in the conversation.

It did make me think though, about when she goes to school. At school she will have to change in the changing rooms with the other girls when they go swimming. To eliminate staring, or people making fun of her, I figured we would talk to the class when she starts and if she feels comfortable, she can show them to stop people wondering and hopefully accept her just as she is. But then, each year she will have new students in her class. Do we do this at the start of every year? Do we even do this? I would love to hear from other nevus parents, or parents of children with differences, and how they have dealt with school.
We have always been open and honest with everyone about Olive's CMN, including her and I hate to think that when she starts school she might all of a sudden want to hide her body. I know we cant control everything in life, nor how people react, but I'd like to think I can be armed with as much information as possible!

I have always said that the baby years and these pre-school years are the easiest with Olive. But I don't want to make the coming years harder for her (and us!) than they need to be. In the meantime, we are thoroughly enjoying our hilarious little girl. I can't believe it's almost been 3 years since she was born. She was just the sweetest wee baby. So enjoyable, so lovely and so damn cute! She still is, and so much more....

Time of Our Lives

And just like that, our trip to Adelaide is over and done! My, how fast it flew! We arrived in Adelaide last Thursday and after meeting up with my Aunty Karen and Uncle Dave, we checked in to the holiday park where the conference was held.

Here was a bunch of people I had come to be friends with over Facebook but had never met in person. I knew all of their faces and names but didn't really know them.
I was feeling rather anxious and shy at the prospect of meeting new people. I wasn't sure what I was supposed to say, or do, so I really had to push myself at first.

As it turned out, I never had to push myself at all. The instant friendships which formed and will no doubt carry on through our lifetimes are immeasurable. The first day, the most common phrase heard was, 'Hi, I'm ***, do you have a nevus?'.
Where else can people with CMN and their parents so openly ask such a question, with the knowledge that everyone else there will understand what they are talking about? It is so hard to explain what this conference was to us. It was so much more than we ever could have imagined.

Olive made friends straight away, with a wee girl called Ellie. Within 5 minutes of meeting, they were lifting their shirts and comparing their nevus. They rolled around the grass together, giggling and carrying on.

She was also doted on (as you can imagine!) by everyone else, in particular Danielle - Michelle's (NeSA Director) 13 year old daughter. Michelle's kids are just awesome. They are such a beautiful family, so close and supportive not only to one another, but also to every one of us who attended the conference.

Jaxon and Meisha also made instant friends - Jaxon with a dear boy called Coen, who has a scalp nevus, and Meisha with Ellie and also with the older girls, all of whom have a nevus. All weekend, the kids would be off in the pool, or in the games room. They played on the huge jumping pillow or would wander around the park. They had the time of their lives, and it was fantastic to see them all get along so well. The older girls often took the younger girls with them to do whatever they were doing, or they would all play together in the pool or on the splash pad.

This freed us parents up to socialise and attend seminars/presentations. It was the start of a new way of communication for nevus groups, with having live presentations via the internet with well respected surgeons, researchers and doctors. We learnt a LOT in these presentations, though I am not going to share it on here as some of the new developments are not yet for Facebook publication and I'd hate to put my foot in it somewhere!

We shared birth stories, and I suppose it isn't surprising that a lot were very similar. A lot of us had our babies taken away for a length of time as the doctors were stumped. A lot of us had endless streams of doctors and health professionals coming to 'view' these tiny and helpless wonder's of the medical world. When discussing our experiences, there was no need to explain how situations felt, or why each chose to take the path we did, because we all UNDERSTAND. It is beyond words how comforting these conversations can be!

On the Saturday, we had 12 hours of non-stop presentations. This was pretty full on and we all missed one or another, due to needing some rest. After this full on day, despite being absolutely shattered, we put the kids to bed and had a few drinks with some of the others and reflected on the day. It was really cool to be able to do this, as some of the people had travelled from as far as America and Malaysia.
I had the absolute pleasure of meeting Mark Beckwith and his lovely daughter Megan. Mark is the Executive Director of the US organisation, Nevus Outreach. Mark gave a great presentation on the Power of a Parent.

Sunday, we all took the coach to Gorge Wildlife Park, where we got to hold koalas and feed kangaroos. The kids really enjoyed the park and we all loved spending time with the other families.

As we left the park, Jaxon's new friend, Coen, came up to me and gave me an Australia keyring - "so you don't forget Australia". I almost cried! All of the kids were such kind hearted kids. They were all so helpful and caring and they all really nurtured one another in different ways.

The youngest nevus owner there was Jaxon, a gorgeous wee 4 month old boy with a bathing trunk nevus. He was the sweetest little thing and seeing his satellites on his head and wee legs really took me back to when Olive was a baby (a little too much perhaps, I kept sniffing the poor kid! haha). The eldest was Rita, who is 69 and travelled on her first overseas trip all the way from Florida. I absolutely adore Rita. I loved sitting with her and listening to her telling me about her life. As you can imagine, things were much different when she was young compared to the facilities and care etc that our kids have now. I am so happy that I got to meet Rita, and I definitely hope to see her again one day!

I could go through and tell you what I love about each and every person that was at the conference, but we'd be here for days! Let's just say that all of the people I met, I am so glad to have met them.
As a mum, it is hard to put into words how grateful I am to introduce my girl to others with the same condition as her, at such a young stage in her life. It takes away the 'rare' or 'different' factor for her somewhat, because it means she won't go through years of her life thinking she is the only one. Even if she doesn't remember this trip, we intend to carry on these friendships, and so Olive will always know of other children who have similar skin to her. She won't feel so alone.
This is one of my biggest wishes as her parent - for her to never feel alone. And we have started the ball rolling, both with attending the NeSA conference, and reaching out to others in New Zealand.

I don't want other nevus parents to go through what we had to go through. To have no answers and have to muddle through with little to no information.
I want there to be somewhere for new parents to be directed, for support and information. To have someone say to them, 'it's OK. Your baby will be OK'.
I want doctor's to have a pamphlet that they can give to patients, so they can ring or visit our website or visit us.
I want to hold conferences, so that CMN patients and their family can be kept up to date with new research.
I want others to experience what we did, right here, in New Zealand.

And I'm going to do it.

There is just one thing holding me back. The thing that holds most people back from pursuing their dreams - lack of funds.

We need sponsors. We need individuals or companies to support us financially so that we can get this how on the road. My first goal is to raise $1000 to cover the legal fee's involved in us registering, and to cover the cost of our first pamphlet design and print.

If anyone can help, please email me here or donate here (there is a simple reason for setting up a givealittle site. We cannot open a bank account until we are registered, but once we are, we will be able to take donations via other means).

Thank you, from the bottom of my and my family's hearts, to everyone who donated and gave us this opportunity of a lifetime. It was so so much more than I ever imagined, and I will forever be grateful to you all.

xxx

Today is the day!

It's like Christmas in our house today. I have three very excited children, and us two almost as excited adults (albeit a tad stressed! ) who are going to board their first international flight in a few hours.

Today is Adelaide day!

Its 4am here in New Zealand and I have woken myself earlier than said children to have a coffee before madness descends upon our household.

2014 was a huge year for my family,  the biggest thing being mum's brain tumour. The excitement of Adelaide got buried when our worry and sadness of mum's situation took over.
Yet here we are, getting up at ridiculously early hours, getting ready to fly to our first Nevus Support Australia conference.  WITH mum.
My mum is a fighter. She has kicked this evil disease like a cancer fighting ninja. She is truly an inspiration. A woman so invested in treating her body with the care and attention it deserves. A successful and strong woman,  a wonderful role model for my children.

I am so proud to call her my mum, and best friend.

For weeks, Olive has been asking anyone and everyone if they too are coming to Adelaide.  Of course,  everyone says no, it's our special trip - but it has been a great opener to talk about how only some people have a Nevus.  I have explained to her that most people dont have one, that just her and a few other people were blessed to have special skin. So sge is super excited to meet her 'nevus friends' in Adelaide,  most of all the dear wee baby boy Jaxon ("just like our Jaxy aye mum!") who also has cmn.

I've been asked a lot about what part I am most looking forward to, and though I am really interested in the presentations and information,  I have to admit that i am really looking forward to socialising with this extended family we have adopted.  To be among others who understand my fears and triumphs that come with raising our little girl.

And I finally feel ready to arm myself with all I need and come home and throw myself into Nevus NZ, so we can provide similar support to those in New Zealand.

On that note, I'd better throw myself in the shower so I dont miss that plane!

I can never thank you all enough for giving us this opportunity.  Without everyones unfailing support and encouragement, we truly wouldn't be doing this.

Thank you all, from the bottom of my heart x

There is such a build up to Christmas, it can be such a time of stress for many families. Expectations from people, commitments to fulfil, events to attend, money to fork out - you name it, it happens over the Christmas holiday season.
This year, we also had to move houses. So we did it three days before Christmas. A crazy decision in hindsight, but with the enormous help of my family and a good friend, we did it! We got in on the Monday and were all unpacked by the Tuesday. Kids got a tad neglected and left to their own devices (which generally consists of ipods, computers and ruining Mum's make up), but it wasn't long and we were all settled in. We are still getting used to the different house and surroundings, but overall we are happy with a new beginning. And the kids can stay at the same school, which is a biggie for us.

For Christmas, we brought India to Mum since she couldn't go on her trip in the end. It was great! Lots of beautiful Indian outfits, delicious food, and memories with my amazing family.

So with all of that craziness out of the way, we can now focus on the trip to Adelaide. Three short weeks and we will be flying out. I actually can't wait. There are so many people I will have the opportunity to meet on this trip, and so much information I can drain from them! Not to mention, the kids and I have never been overseas so that is exciting in itself!

Olive is super excited but still doesn't really understand time concept so often asks, 'we going to Adelaide today Mama?'. I have told her about the wee baby, Jaxon, who has a nevus like hers and she can't wait to see him. I think she just likes the idea of not being the baby for once as well!

As you know, we shave the big satellites on her arms and legs to allow for easier sunblock application. The other day she grabbed Eddie's nose trimmer (what we use to shave as it is quiet and not scary for her) and came out and asked me to shave her nevus while Pop was here. She sat very quietly and attentively while showing Pop how it's done.

Later that evening, she was running around nudey after her bath and ended up lying on my bed stroking her thigh.
'Dad!' she called.
'We shave my back?'

I couldn't help giggling at the demanding request of a little girl to her Daddy.

We talked to her about it and told her we weren't going to as it might become really itchy when it rubs on her clothes, especially with how hot it has been here lately and how hot it will be in Adelaide.

She understood, and was happy to leave it for now.

But isn't it funny, how you might think of yourself assessing situations like whether to let your girl shave her legs, etc perhaps at pre-teen or teen age, but for our nevus babies we are contemplating whether to let them do these apparently socially acceptable acts before they even start school? And it's not even a big deal, it just is.

Let's make 2015 a great year. For happiness, prosperity and health. For research and cures and growth.

Let's make it count.