Thursday, 20 November 2014

We are a mere two and a half years into our journey with our little bundle of joy....or more accurately, our pint-sized hurricane of a human.
Olive is a full on toddler. I never experienced this with the other two, or if I did, I have conveniently forgotten all about it! You cant look away for two seconds with her, or you will come back to sunscreen all over the front door, loom bands strewn across the house end-to-end, breakfast smeared on the table/floor/door/anyone, or more recently a mask made of playdough covering said hurricane's face.
It is non stop all day every day, including when she is sick. Which she has been for the last week and a half. This has made her very clingy (understandably - who doesn't want Mum when they are sick!) and very unwell. What started as a cold progressed to a chest infection and the start of pneumonia and then to an ear infection. Because of the rattle in her chest, our GP sent us to the hospital for an x-ray. I was quite worried about her, as her temperature was getting over 40 degrees and she was really unhappy.

It's been quite a while since I have had to 'explain' her nevus, and as such I completely forgot about it until the nurse went to listen to her chest.
"Is that a birthmark on her arm?" She asked, pointing to Olive's big satellite on her left arm.
With her nevus being the last thing on my mind, I was somewhat taken aback.
"Oh...yes, it is. She has a giant congenital melanocytic nevus on her back."

Cue blank look from nurse.

"Here, I'll show you." I said, and asked Olive her permission (since she is getting older and is very good at understanding and talking, I always ask her permission now before showing anyone. She always says yes).

As I lifted her shirt, the nurse went, "Oh! I've never heard of that before".

It still astounds me how many medical professionals haven't heard of CMN, let alone seen it. It is such commonplace in our family now, that we tend to forget sometimes we may have to be the one teaching those we turn to for help in other aspects with our children.

I also had a similar reaction from the registrar when she finally came to do her consultation. Except this time, as I went to explain, she cut me off and said, "but it doesn't matter, she is still beautiful".

Which she is. But I would have thought, for someone who studies medicine and health that she may be a bit more interested in the medical rarity of it. I guess some doctors are just more interested than others! (Although, on second thought, perhaps she was just hurrying to get around all her patients).

Either way, it was yet another experience to add to our belt. You just live your life getting on with it, and tend to 'forget' somewhat that your baby has something special. Until someone else reminds you.
I guess it will always be this way. It inspires me more to get Nevus NZ up and running so we can have pamphlets to give to people for them to read later when they have the time, and somewhere New Zealand based to point them to for more information.

All in good time.

Wednesday, 22 October 2014

What an absolute whirlwind the last 2 weeks have been. Such a rollercoaster of emotions for everyone. I don't even know where to begin.
With Mum having had melanoma twice before, we all thought the worst. A tumour on the brain. You can't get a lot more scary than that.

We were all expecting the worst - we truly thought the cancer would have spread, and that we may face losing our beautiful Mama.

Goes to show what we know. Mum has had surgery, and is already at home! There is no residual tumour showing on her MRI and she is doing remarkably well. Exceptionally well. In fact, you wouldn't have any idea, to look at her and talk to her, of what she has just been through.
Mum is such a fighter, but she is also real. She accepts that this is her path and that what is supposed to happen, will happen.

We aren't ready for her to go yet, and obviously neither is she. She is truly just so inspirational with her positivity, acceptance and 'get on with it' attitude.

I am so proud to call her my Mum.


When I was pregnant with Olive, I used to go and visit Mum at work most days. She worried that I'd stop visiting once I had the baby. If anything, I ended up visiting more! Olive and I would pop in to see Grandma and have a cup of tea. As Olive got older, she would practise her crawling up and down the hallway of the clinic.
My kids adore their Grandma Cheryl, and Mum adores them all just as much, of course as well as all the other Grandies!

This experience with Mum and melanoma again has made me think of Olive and her nevus. We all know her risk is increased, though we are unsure by how much (the experts these days tend to think it is exaggerated). It doesn't help me wonder though, are we doing the right thing by not getting an MRI? Lately I have been veering more towards asking for one, but our dermatologist wasn't that keen. He thinks it is looking for issues that aren't there. While I understand and to some degree agree with him, I still mull over whether it is the right choice.

The last few weeks have seen Olive becoming really sensitive to noise. She blocks her ears a lot and doesn't like strange or big noises. We had her ears checked a number of times with the GP but no problems there. Which got me wondering if there may be something going on inside that we don't know about.
And then we found out about Mum and as you can imagine, my anxiety started playing up, and so did my imagination.

So I have emailed our dermatologist to ask his advice and am trying not to worry. Why worry until there is something to worry about, right?

But I suppose as a parent, the worry is endless. No matter what.

Saturday, 11 October 2014

My Mum has been there for me my entire life. She has stood by me even when I've made stupid decisions she doesn't agree with, and she's been there through all the tough times when things are out of my control. She has celebrated the happiness with me and laughed away my tears with me too many times to count.
I remember when I was little and I would hold her hand. I loved her naturally manicured finger nails and would press the tips of them against my fingers. They were strong and comforting, just like her.
Now it is our time to hold HER hand.

On Thursday, we discovered my beautiful Mum has a tumour in her brain, which they are 90% sure is the return of melanoma. She has had melanoma twice before - once in her ankle and again in her lymph nodes, both of which she had surgery for.
This couldn't have happened to a 'healthier' person. My Mum Cheryl and my stepdad Tim, are some of the most health conscious people I know. They ensure that everything that goes into their body is nutritious and full of goodness. Neither of them smoke, Mum doesn't drink, nor take drugs.
It just isn't fair. But I guess sometimes {really} shit things happen to the best people.

Mum is due to have surgery very soon and the recovery will be long and hard. We are all there for her and Tim to do whatever needs to be done.
But I just wish it didn't have to be. I wish my Mum didn't have to go through this, to be slapped in the face with such a harsh sense of reality.

I hate cancer.



Wednesday, 10 September 2014

I read a post the other day about enjoying the little moments with your children, because you never know when they will be the last - there will be a last time they ask you to kiss their grazed knee better, the last time you breastfeed them to sleep, or a last time they sneak into your bed for a cuddle in the middle of the night,  or the last time you kiss them goodbye at the school gate. It's easy to get caught up in the trials and tribulations of day to day monotony that comes with raising young children, and forget to cherish these moments and remember one day they won't do it again. And you will yearn for just One More Time.
I certainly know I am guilty of it, FAR too guilty. I let myself get stressed too quickly and when in the moment, can forget to pay enough attention to the grubby little hand giving me a bunch of flowers with stalks to short, or the extra kiss request at bedtime instead of carrying on with the washing or getting annoyed because I just want them asleep.
So I am trying to pay more attention. I am trying to slow down and soak in these moments. With Jaxon being almost 9 and Meisha just turned 7, I know I have inadvertently skimmed over some of these 'lasts' and it's true, I do yearn for One More. We have thoroughly enjoyed Olive as a baby, and now she is two-and-a-half, she is gaining independence at a rapid speed. Just a few weeks ago, I changed her last daytime nappy without even knowing it at the time. She decided she wanted to start using the toilet, and that was that. Nappies over. It's exciting but there is a certain sadness that comes with this newfound determination she has to be a Big Girl. We are well on our way to having 3 big kids and with that comes the realisation that the baby years are over for us. Don't get me wrong, I don't want anymore, but my gosh my children were lovely babies. I will remember those years with such fondness in the years to come.

In my last post, I mentioned studying and childcare. We have enrolled Oli at a lovely childcare centre and she has started going two days a week. She absolutely loves it. She is very independent and runs off on her own to play as soon as we get there, without so much as a backwards glance to me. It makes me really happy to see her in an environment where she feels safe and happy, with other adults who she is comfortable with. The teachers have been fantastic with learning about her nevus and paying attention if she falls or knocks it, to check and make sure it hasn't torn.
Olive takes herself to the toilet there and has had no accidents! I'm so proud of her, especially considering she is one of the smallest kids there and has to use the stool to get on and off the toilet, and to flush!
Along with toilet training herself, she has also started sleeping through the night in her own bed. The Bottle Fairy came a few weeks back and took away her bottles and since then, Oli has been fantastic at sleeping all night in her bed. The last few nights she's woken and wanted a cuddle, but hey - it might be the last right? ;)

With Olive being in care for 2 days a week, it means I have been able to have a wee break to do things like the groceries (oh, exciting!) or catch up on programmes I have missed like My Kitchen Rules (or My Chicken Rolls, as Olive calls it!), or to write on here! It's also given me a chance to think a bit more about what I want to do next year. I have decided not to do the Diploma in Not-For-Profit Management at this stage, as there are some course requirements which will make it very difficult for me to participate effectively. That's ok - what will be, will be and something else will come along, I am sure!

For now, I am enjoying some peace and quiet a few days a week and then enjoying my little darlings the rest of the time. This photo was taken by Eddie on the weekend. Olive completed a star chart for sleeping through the night in her own bed, and was rewarded with a trip to Chipmunks playground. She had an absolute ball.



Sunday, 27 July 2014

This morning the whole family went out. We dropped the boys at the barbers, went and got Meisha and my hair cut and then went to the supermarket. We made a beeline for the magazine stand and stood there frantically flipping through until we came to a story....about us! Our article about Olive and her CMN is in this week's national Woman's Day magazine. Meisha and I stood there giggling like Giggling Gertie's at the sight of our little family in a magazine.
For my international friends, here is a wee pic of the story, though it may be hard to read! For my NZ friends, please go and buy Woman's Day lol.
As you all know, I'm quite shy so this is a pretty big thing for me and my family! It's very exciting but very nerve-wracking at the same time. I only hope we can reach more people with CMN through this article and widen our New Zealand group x

Wednesday, 23 July 2014

Bit of a follow up...

I feel like I am admitting defeat in posting this, but I am an honest person and I feel I need to update a previous post I made about my depression and anxiety.
In my prior post, I was saying how proud of myself I was for coming off the antidepressants. Unfortunately, after 2 weeks of being off them I had to admit to myself that I needed them again. My anxiety came back ten fold and my breathing was out of control. I had insomnia and no matter how tired I was, I couldn't get my brain to sleep.
And so back on the trusty little pill I went. But I am trying hard not to consider it a defeat, though it certainly felt like it at first. I mean, nobody wants to admit they aren't coping. Nobody wants to be viewed as weak. But now I see it as more of a learning curve. Something in my brain obviously doesn't work the way it should. But that isn't the negative thing I thought at first. It's ok.

I mean, if either my children or I needed antibiotics for an infection, or a cast for a broken ankle, or losec for reflux (you get the drift?), I wouldn't withhold it. Sometimes our bodies simply don't function the way they are intended to, and thankfully, these days there are things that can help. I get that now. But there is such a stigma surrounding mental health and antidepressants that being in this position, you cant help feeling like a failure.

But there is no failure in asking for help. It simply means you cant do it on your own, and that isn't a negative. Which is why I am posting this. Because sometimes other people need to know it is OK as well. That what works for others may not work for you. That taking a walk in the sunshine every day may not be your cure. That good food and exercise might not be the right thing for you. It might not be meditation or relaxation techniques. It may not be taking antidepressants either. You just have to find what helps you, and this is what helps me. I'm cool with that now.

Another major thing that has helped was talking. Talking to people about my anxiety has helped immensely. Others who suffer from it as well are a big help in realising you are not alone, you are not a freak and you are not screwed up. Sometimes things just happen the way they do and you have to deal with it in the best way possible for YOU. One of the greatest gifts I have been given, is the friends I have that have encouraged and supported me throughout everything.
I am so grateful to have these people in my life.

Another decision I have come to through talking with a special friend of mine (Hi Rach!), is to enrol at Uni. I have decided to apply to do the Graduate Diploma in Not-For-Profit Management. Starting the NZ nevus group is a passion of mine and I want to do it right. I want to build it on strong foundations so it has nowhere to go but up. So I feel completing this course is the best way to achieve this, as it will give me the skills and experience to make our organisation grow, in the most positive way possible. I have an interview this week to discuss the course requirements and what have you, so fingers crossed I get in! If not, well I suppose it will be what is supposed to be and I can think about what next when the time comes.

Because I am considering studying, I have also decided to check out some childcare centres and perhaps look at enrolling Olive for a few days a week. She is so used to being the baby and I think she needs to learn to play with kids her own age!

Olive's getting a little bored with being at home with Mummy, and needs a bit more stimulation than I give her. I think its a good thing. It will help develop her independence (God, does she really need any more of that though?!) and give her a chance to do all the messy icky things like play-doh and painting that I don't do at home!

I think my Little Miss will love it. Almost as much as she loves her Daddy <3

Monday, 30 June 2014

It's a sign of a good time when you have no photo's of the event! We had our karaoke night on Saturday, as our final fundraiser for our trip to Adelaide. It was an amazing night! We all had so much fun and everyone had a sing, even all the shy ones! It was so cool seeing people you would never expect getting up on stage and letting loose.

Aside from a few organisational blips at the start (hey, the only things I have had to organise for the past 8 years is how many nappies are left and have they got food for school!), the evening went sensationally. We held it at the Glen Eden RSA and the staff were so accommodating and helpful, not to mention friendly and supportive - I had a heap of the lovely members slipping notes into my hand 'for your girl'. Everybody was so charitable and happy and INTERESTED!!! I had the opportunity to educate quite a few people on CMN which is a great step in itself.

With this being the end of our fundraising, I wanted to post thanks to a lot of people. With the generosity of everyone who donated through givealittle (which includes the donations from separate fundraising events that others held on our behalf), the bowlathon and the karaoke night, I am delighted to announce that our final amount raised is an incredible $8200!!!

I can never thank everybody enough. Our community has really pulled together for us, and words truly can't say just how grateful we are. I'd like to make a few thanks specifically, to first off PINS Lincoln Road for hosting our bowlathon, to Glen Eden RSA for hosting our karaoke night, Party at Yours for use of their karaoke machine, and to the companies who donated for our prizes and raffles:

Stardome
Mexico
Smashbox
Kiwi Valley
Citrus Based Cleaner
Chelsea Sugar
Enza Foods
Teza
Tank Juice & Smoothies
The Fairy Flower Shop
The Aussie Butcher
Kaylee's Cupcakes
Amazing Maze/Spookers
Wella
Volt Coffee
Eco Store
Random House

Not to mention my in laws, Andrew and Marlene for contributing vouchers for the raffles, my parents and siblings for babysitting and helping at both events, my friends and family for coming to both events, as well as all of the people who we hadn't met but who came along to support us. A HUGE thank you to those who took it upon themselves to hold their own event s to raise extra funds - your kindness will never be forgotten.

Each and every one of you are beautiful people with kind hearts, and I hope to repay the kindness one day when others are in need. For now, I think it is safe to say we can pretty darn excited because our little family is going to ADELAIDE!!!!

This little face, has raised so much awareness, love, and a real sense of community in her short two years. Love to everyone x



Thursday, 19 June 2014


Wow! The response I have had from my last post is astonishing! My Facebook inbox was going non-stop with messages from people (in particular, mother's) sharing their experiences which were very similar to my own. I was so hesitant about posting it, for fear of people knowing my 'secrets' but I am so glad I did. Depression and anxiety can be such a taboo subject and it is really hard to talk about to people who haven't been through it.
Though it is sad how many DO experience these, it is also quite comforting knowing you AREN'T crazy, you AREN'T alone. People DO understand. And by golly, they are supportive! There are no rules on how to deal with it - everyone is different and what works for one may be to the detriment of another person.
I am infinitely grateful to those for supporting me with the way *I* have/am dealt/dealing with it.

I'd like to share another blog today. This beautiful young Mum, Aseel, joined the Nevus Family last year in March, when her son Abdalla was born with CMN covering a lot of his back and neck. Aseel is originally from Iraq and her husband and her moved to Sweden for a chance at a better life. You can only imagine how hard this hit her - not only dealing with a new baby who was different and who had the doctors baffled, but add to this living in a foreign country with no family and support system.

I, among others, were so worried for Aseel in those early days. Her posts were so sad and I just wanted to wrap my arms around her, hug her and tell her everything would be OK. It is hard coming from little old New Zealand, to understand the gravity of devastation in her home country. To understand why she couldn't just go home, or why her family couldn't just come and support her. I actually feel naïve even writing that, but alas it is true. I have never experienced any of the things that Aseel has, and so though I tried, I just couldn't grasp the concept of just how hard things were for her.

I am so proud of my friend-who-I've-never-met. She has come such a long long way and proven to herself how incredibly strong and courageous she is. She managed to pull herself out of the hole she was in and appreciate and marvel in her special Abdalla. Have a read of her blog here to get a glimpse into her life. She is truly one of the most amazing and inspiring people I have ever had the pleasure of 'meeting' (I don't see a real-life meet happening anytime soon, but hey - perhaps one day!).

Monday, 16 June 2014

After a lot of thought, I have decided to do an extremely personal post. This one is not for sympathy, it is because I realised just the other day how damn proud of myself I am - and I cant share that without sharing a bit of MY story.

I have always been a very shy person, with not a lot of confidence. I dislike photos of myself with a passion because I just simply do not like the way I look in them. They are a reminder of all of my flaws which I so often try to escape from. As a result, I have very few photographs of me with my children. Which is sad for me....but especially for them. They should have a collection to look through and smile at, and to treasure when I am gone.

I've always been a very cautious person, I like to have routine and stick to the rules. It makes me nervous if I am with someone and they are doing something they shouldn't (my sister always laughs at this, as I am the only one out of us 5 kids that has ever been arrested! Only by naïve association though - definitely not by intent!).
When I was pregnant with Olive, I started having breathing issues. I was just 8 weeks pregnant when I started getting puffed and out of breath just walking upstairs in our house. I had heart palpitations and my heart would thump fast and loud in my chest. I had many a shopping trips where I had to sit in the car afterwards for fear of passing out. I saw the doctor numerous times but there was never anything out of order - we all thought it was another silly symptom of pregnancy that I'd adopted.

Around the same time, I also started having these vivid 'movies' play in my mind. The kids would go running down a hill and in my mind's eye, I would see them falling and bloodying up their face. |Or if we crossed a bridge, I could see in my head, one of them falling and drowning. It wasn't normal, I knew that but I just didn't know how to talk about it. It was generally to do with the kids and I thought perhaps I was just getting nervous about having three of them.

After Olive was born I had her to focus on. I had this tiny vulnerable person to protect and shower with love. I had these bigger two children that I needed to put powerful positive energy into so that they could feel loved and supported, to in turn do the same for their sister.
My issues were stashed away at the back of my mind.

Soon after Olive's first birthday in 2013, everything came to a head. For the previous year I'd had a lot to focus on - our new baby, the older kids, planning a wedding, planning a first birthday...there had been no time for my things!
But now, everything calmed down and I was forced to look at what was going on. The doctor diagnosed me with hyperventilation syndrome and anxiety. For anyone who hasn't been through this, it is where you retrain your body to over breathe. You take short sharp breaths from your chest rather than deep tummy breaths. In doing this, you open a whole new can of new symptoms - chest pains, headaches, dizziness, extreme fatigue, nausea, irritability and achy muscles to name just a few. I had all of these and more, and it was taking it's toll on my body.

With the amazing support of my Mum, I tried breathing exercises, diet changes, kinesiology, naturopathy....all of which would work for a short period and then my symptoms would come back worse than ever.

By this stage, I'd become very withdrawn and isolated myself a lot. Olive and I stayed home most days because it was easier to try to control my anxiety and breathing when I was at home and calm. But it was really wearing me down. Another visit to the GP saw me on antidepressants for the first time in my life. The first ones were hideous and gave me horrible, horrible dreams, insomnia and crushing headaches so I was put on another.

This one, along with cognitive behaviour therapy started my road to recovery. For the first time in about 2 years I could take proper breaths. My head and chest didn't hurt every day and I started smiling again.
I started taking them last September and in doing so have gotten on track with small things that make me happy - gardening,  reading, cooking, eating good foods...and surrounding myself with positive people. I have all of them to thank, for being there for me and LISTENING to me.

I have just managed to wean myself off them, which is a big feat in itself (as anyone who has been there knows!!) and for that, albeit a bit silly to some people, I am proud of myself. I really feel like I'm coming out the other side.
And you know what? My confidence is getting better. I take lots of photos with the kids now and even 'posed' for a photo shoot to be printed in a national women's magazine in the next few weeks (we have a story running about our Olive).

These are huge steps for me, and today? Today I'm feeling pretty damn proud of myself.

Here is me and my beautiful big girl, Meisha xx


Sunday, 25 May 2014

Strike!

Last night we held our bowlathon to help with the rest of our fundraising towards *Olive's Chance*.
Miss Olive stayed home with Pop, as it was too late a night for her. She was a bit out of sorts when she woke a while after she'd gone to bed (read screaming :-\) but Pop quickly settled her on the couch with him, until we came home.

Everyone had a great night, especially my big kids who spent the night winning tickets to cash in for prizes! They got thoroughly spoilt by friends and family shouting them games and treats and Jax said he had "100% fun" lol.

We had a great turn out, with 16 bowlers all up. People put a lot of time and effort into committing to the event and getting sponsors. I want to thank each and every one of you who came and supported us. You have no idea how much we appreciate everyone's support and dedication to our cause. Thank you all, so so much.

I'd like to also thank some of the companies for their donations of the products we used as prizes. Volt for some amazing coffee; Teza for some of their delicious iced tea; Smashbox for $300 worth of their beautiful make up; Mexico for a $100 voucher at their awesome restaurant; Tank for vouchers for yummy healthy juice/smoothies; Kiwi Valley for a family pass; Spookers for a double pass and to PINS on Lincoln Road for hosting our bowlathon - the service was fantastic. Thank you all very much.

We managed to raise over $1500 (unsure of final count until sponsor sheets come in) but that is a LOT more than we thought! The support is just so overwhelming. We couldn't have got here without each and every one of you. So thank you all.

We have just one last event coming up on the 28th June. We are having a karaoke night where you can pay just $10 (all proceeds go directly to our cause) and come along for a great night of terrible singing (that's just me, not sure about you! haha) and be in to win some wonderful prizes and raffles. You can email me for more details if you are interested!

For now, I will leave you with this pic of my beautiful babies, who all of this is for. xx

Thursday, 8 May 2014

As with a lot of online groups, there is a great mix of people in some of our nevus support groups. People from all different countries, all walks of life, with contrasting attitudes, different upbringings, diverse outlooks on life. We all parent different to one another and we all have individual personalities. So it probably doesn't come as a surprise to tell you that sometimes there can be big disagreements on some of those forums. The most common argument is removal versus non-removal. As you can imagine, this is an incredibly difficult decision for any parent to make. First you are given a baby who isn't as we expected (and ALL babies are different! We all know they don't come with a handbook!), and you have to deal with that in itself. Then, most people are given the option of choosing to either leave the nevus and monitor it, or to use a removal process - generally either using skin expanders (implanting an expander under the 'good' skin, expanding it over time then taking the expander out, removing nevus skin and replacing with the new skin), curettage (scraping of the skin), laser, or sometimes grafts.

None of these are an easy option. Every option we choose comes with it's negatives and positives. I don't think any parent makes the decision lightly, and I believe we are each making what we consider to be the best choice for our child. As I said at the start of this post, we are all different. I think we make our choices based on many factors - our country where we live and our society, our support system, our doctor's recommendations, our beliefs, our own confidence and fears, where on the body the nevus is and the size of it, and our doctor's reactions when our babies are born, amongst other things.

We are all different people (sorry, there's that word again! :P) and need to respect each other accordingly. Our nevus community is so small in this huge world and it always saddens me to see others arguing over the 'best choice' - there IS no best choice. There is no clear cut of what to do. Sometimes I am still unsure if we made the right choice by not pursuing removal processes more with the doctors. One day Olive might tell me she wishes we had removed it when she was younger, or she may wish to go down that route as she gets older. For now, as her parents, we are just doing the best we can....I hope others can see that, and to also recognise it in all the other parents who have been placed on this similar path.

On a brighter note, is that because of Olive, I have met a whole new world of people, most of whom are just amazing. They are inspirational and positive and have provided me with so much support and information and smiles over the last two years. Thank you, my 'nevus family'!!

And another bright note, we have hit our fundraising goal!! Thanks to the wonderful generosity of friends, family, and members of the public (all with beautiful hearts!) we are so stoked to announce WE'RE GOING TO ADELAIDE BABY!!

The kids are super excited and we have concreted the milestone by paying the deposit on our accommodation. Can. Not. Wait.

We have a few fundraising events coming up to try to raise the rest of the funds necessary - a bowlathon in May and a karaoke night in June. If anyone is keen on either of these, please get in touch with me through here.

Donations are still going, even though the target has been met (target was for the basics - flights, accommodation and passports) so if anybody still wants to donate, you can do so here:
https://www.givealittle.co.nz/cause/oliveschance

Tuesday, 29 April 2014

This ANZAC weekend , I organised our first ever New Zealand group meet-up in Rotorua, and wow - what an experience. So many wonderful people with so much knowledge and experience to share. We managed to get together 8 New Zealand families - as well as having the pleasure of the director of Nevus Support Australia, Michelle's company for the weekend.

I can't begin to tell you what it meant for us to speak face to face with other parents who have children with the same condition as our Olive, and to talk with those who are older and further along their path. I'm sure others can relate when I say there is something special in being able to talk with others in the same boat - whether it be rare condition like Olive has, or a heart defect, or another type of medical 'ailment', To be able to meet a bunch of beautiful people of various ages who have had such a similar road to the one you are on is both relaxing and overwhelming all at once.

Olive was the youngest person with CMN there, and the others ranged in ages up to 47. For me as a Mum, I found it really reassuring to see these brave and beautiful girls and women (there were no males with CMN there!) leading such a wonderful, fulfilling and normal life. Each one of them was an inspiration for me, and I feel they will be such a positive influence and great role models for Olive in years to come. There was such a delight in watching all the kids playing together so comfortably and getting along so well.

I got to learn about a whole bunch of medical procedures I had no idea about, and to learn of what the others did and didn't like about living with their nevus. I will admit, that for someone who is shy like myself, the whole aspect of meeting new people was a bit scary and I was quite anxious beforehand. But I needn't have been. They were such easy-going people and going by the feedback I have received, they each found it just as beneficial as us. I am so thankful that each family was so receptive to being open and honest with us all, just as we were with them, and that everyone was so interested in each other!

What a blessing to meet this many families in such a short span of Olive's life. Olive of course, was oblivious to most of it. She was more intent on running out of the pub door on Saturday night and screaming her way down the slide at the park we met at on Sunday. We got some gorgeous photos of everybody all together, and all of the kids had a blast.

In what can appear to be a 'negative' when your child is first born with such a distinctive difference, sometimes you can meet some of the most amazing people.

Here is my wee girl with her 'same same' friend, Haley, who also has a bathing trunk nevus.

Thursday, 3 April 2014

They say it take a village to raise children and though a lot of the time I feel like I'm all alone in this long haul, and no-one else could at all understand my sleep deprivation or how close I am teetering to the end of my tether, I actually have to agree wholeheartedly. I could never be without my village. With each stage of the kids lives, my village grows a bit more and involves more people - friends, teachers, new family. My village is something I value a lot and I lean on them heavily with my parenting -  it may be a phonecall to my Mum to tell her a funny thing one of the kids said, or a post on Facebook asking what other parents do in such and such situation, or perhaps even my Dad or my sister taking the kids overnight so we can have some time as a couple. Whatever the situation though, I am always aware that these are my 'guys'. And I have some damn good ones.

Today my youngest babe turns two. Two whole years since my little angel graced us with her presence. And she hasn't stopped. I had as many Facebook posts on my wall today wishing my little girl a happy birthday as I did on my birthday! And nobody even got a Facebook reminder! Haha. But honestly? That makes me feel blessed. It is not just me and my husband who love this child (and of course my other two!) infinitely, but our whole village. It inspires me to keep sharing things about my kids and to keep filling them with love.

I wont deny it, my kids do my head in. I lose it and yell, and go all banshee on them. I don't necessarily do things right - hell, a lot of the time I feel like I'm stumbling my way through this minefield of a parenting lark! Sometimes I feel I am too hard on them and other times I think I'm probably taking the easy way out. But we must be also doing a lot right, that works for them as people. I sure know we did today.

Olive woke up and had a smile on her face from that moment on. She was so excited about her approaching birthday that for the last few days she has been singing herself Happy Birthday and then clapping and yelling, 'Yaaaay!! My birfday!!'. She got a new easel for her birthday which was a hit with all the kids,  especially the chalk for the blackboard which apparently makes a good snack. We also gave her a new pink wagon, which was also a hit...until the big kids bowled Pop over with it while he was holding Olive. Whoops!

I spent the day doing her cake, which she had requested as 'two' and a 'pink one'. So that's what she got, a long with far too many sprinkles and lollies. We had a few meltdowns when she was told to wait for Grandma, pop and her aunties before she could eat it!
When we all sang her happy birthday, she grinned the entire song and mouthed along the words of Happy Birthday...to Olive.
My girl was thoroughly spoilt with gifts, attention, cuddles, kisses and love. You could see the pure joy on her face the whole time. It really was heart-meltingly-cute.

Two years gone since she busted into our lives with that charisma and radiant positive energy that she exudes and I wouldn't change her for the world.

Happy birthday my sweet Olive. xoxo

Tuesday, 1 April 2014

This blog is for Olive and while this post isn't directly about Olive, I wanted to post something about some people who are very important in her life. Her older siblings, Jaxon and Meisha. My big kids have been AMAZING since we had Olive. And not just cliché amazing, REAL amazing. I am so proud of the people they are - they are so accepting and comforting. They are confident and they are encouraging. I couldn't have asked for better people for Oli to look up to. Truly.

Jaxon is my 8 year old, as most people know. He is the most sensitive and caring wee boy I have ever met. He has an intuition when it comes to peoples feeling's and he is very good at being supportive and compassionate to people without being prompted. He likes to make people feel special, and when he does, he has this beautiful coy smile that he treats you with. Out of all of my babies, he was the biggest laugher. From a very young age, he would make us laugh with his infectious belly laugh and he still does. You can't help chuckling as well when you hear him chortling away.

Jax is a quiet boy a lot of the time and people mistake him for being shy. He is actually very confident. He doesn't think much of getting in front of an audience and performing. In fact, I think he quite thrives on it. At my mother in law's 60th birthday recently, they had a microphone for people to stand up and say something. Jax insisted on standing up there, in front of a room full of adults he barely knew, and he wished his Grandma a happy birthday. That kind of stuff? That makes my heart just beam with pride.

Jax is never slow to helping me with Olive and he takes good care of her when they play together. He has a good dose of common sense for a boy of his age and will not hesitate to call me if he feels there is any type of danger. He loves laughing at Olive and getting her to do silly things and make her laugh. He doesn't care if things are girly or pink, if it keeps his sister happy, he will do it.

Meisha, on the other hand, he is not quite so happy to help! lol. They are just 20 months apart in age so there is more sibling rivalry there. They are thick as thieves sometimes, and other times are at each other's throats.

She comes across as a shy quiet girl as well, and is actually a lot more shy than Jaxon. She has a wicked sense of humour and can be very clever in some of the pranks she has played on me (like locking me outside in my knickers and bra one morning while she stood there laughing her little head off!)!

My Meisha is a very competent child, she is excelling in her gymnastics class and she enjoys doing things that make her feel strong - climbing, running, lifting things etc. She obviously gets that from Eddie, not me!

Meisha also loves maths. A maths problem excites her and she loves being challenged into figuring out new ones. Meisha struggles a bit more with her reading, where Jax excels with his so often he will sit with her while I am busy doing dinner (or some other necessary but boring task) and help her with her reading. That is a delightful sight to a mother's eyes.

Meishy-moo is a beautiful girl (yes yes, all the looks from me haha!) and is often told so. She has gorgeous dark eyelashes with naturally blonded hair, and coupled with her lovely skin tone and her charming features, she really is a beauty.

Both Jaxon and Meisha have never moaned about Olive taking up time, or about Olive being different and having any different attention or treatment from anyone. They have always been on this road with us - enjoying the good times, knowing the sad times, and always always ALWAYS being right there for Olive. In every way.

I am so proud of my children. They truly are my biggest achievement. All three of them. Not only are they all stunners (haha, biased mother!) but  I am so pleased with the people they are already, and the more they blossom every day.

Tuesday, 18 March 2014

Olive climbed up the chair and plonked herself on it, wrapping her blankie over her legs.
"No babe, hop into bed please". I told her.
"No", she said defiantly.
"Why not?" I asked (stupid me!).
"Coz, Mum. Just beee-coz. Ok?"

Good lord, this child has attitude! No idea of the consequences of her actions just yet, but quite determined to not do anything that doesn't suit her.

She has become almost obsessed with a lovely soft blanket that a good friend of mine gave her for her first birthday. Since she got it last year, I've always had it on her bed as it is so nice and soft, I thought it would feel lovely on her skin. Just the last few weeks, she has insisted it goes everywhere with her. She has to have her 'bankley' when she snuggles on the couch, or when she comes in our bed, or when we go in the car, and today she was dragging it around outside while she watched her Daddy mow the lawns.
She got grass clippings and dirt all over it, so I chucked it in the washing machine. She kept trying to get it out, crying "bankleeeey! bankleeeeey!" and when it was finally done, I hung it in the sun to dry. It would have only taken 15 minutes but she spent every second of it, trying to tug it off the clothes line.
So I cut it in half. Bearing in mind, it was the size of a single bed blanket, she now has 2 decent cot sized "bankleys", so she can leave one on her bed and one can go everywhere.
Ahhhh, genius!

So tonight she had her "bankley" and Taylor Teddy (a teddy she acquired from her Aunty last week and has also grown a fondness for) in my bed and her teeny toes were poking out from beneath her blankey.
"Mummy! Look! Dat toe is sneaky!"
Hahaha, I love this kid!

After her sneaky toe had been poked back in, I told her to turn over (she has also taken to removing her pyjama top so she can feel the blanket on her skin..so sweet!) and I would tickle her back. She obediently did so, and I started tickling. After a few minutes, her breathing slowed and got deeper and she was lying perfectly still so I figured she was almost asleep. Then suddenly she throws herself over, grins and says "tanks Mummy!".

I could record so many conversations with Olive. She surprises us every day. She speaks in full sentences and it is very rare that you would have to ask her to repeat herself. She is a very bright wee button, who is also very capable. She loves climbing and doing anything the big kids are doing. She can lift herself on the rings and takes herself down the slide. I love seeing how more and more confident she gets each day.

She turns 2 in 2 weeks. A whole 2 years since this little tornado came bursting into our lives. She has had a lot of attention since the article came out in the paper, and it is fantastic. We have managed to find 2 new people with CMN through the article which is just so great! We are planning a CMN get-together in Rotorua in April, for NZ families which we are super excited for. Another great step in linking us all together.
And so far, we have raised over $3000 towards our Olive's Chance fundraiser. This is incredible!! Absolutely astounding how generous everyone has been. Thank you all.



For more details or to donate, you can go to: https://www.givealittle.co.nz/cause/oliveschance

Thursday, 13 March 2014

Love, love, love

This is just a short post for today, as I mainly wanted to post a link to the article we did. We are so overwhelmed right now. The support and encouragement from people is incredible. Absolutely amazing. We are over halfway to our goal of $5000 to help with the trip to Australia (we hope to save $5000 as well). Today has been such a high, with donations coming in thick and fast and messages from people sending their love and support. We have had a message from another AUCKLAND nevus Mum - hooray!! Just what we are wanting. To connect with others in the same boat as us.
I was so afraid of doing the fundraising, because of my own insecurities, but I am so glad we took that big step and threw ourselves into all of this. The positive attention coming our way is so humbling and we are so proud that there are such wonderful people not just in our lives, but in the world. All of this, for my wee angel girl, who has no idea....

Thank you, to everyone, from the bottom of our hearts for making this dream come true for our little family.

(You can read the article here: http://www.stuff.co.nz/national/health/9820680/Family-seeks-help-for-tot).


If anyone wants to donate to Olive's Chance, you can do so at:

https://www.givealittle.co.nz/cause/oliveschance

Sunday, 23 February 2014

You know those days you have with your toddler, where right from the moment they wake you up at some ridiculous hour, to the moment they fight you to sleep, everything is a battle? They tip their Weetbix on the floor and smear Marmite toast into the carpet. They tip water over your books, and eat the cat food. They figure out how to climb the fireplace, and how to hang from the bath rail. They refuse to wear clothes, and take bites out of every piece of fruit in the fruitbowl. They hop back in the bath once they're dried with pyjama's on, and they like to make phone calls without your knowledge, often to 111.
I'd like to carry on saying that these are one off days but in reality, this is my life. The Terrible Two's. Which start at one, and end at five. When your child suddenly realises that they don't need Mum for everything, that they have some choice in their life. So they choose. And they choose the most frustrating and messy choices they could ever choose.
And guess who has to pick up after them? U-huh....Mum.

And so although you may not like to admit it ("oh heeell no, my life doesn't revolve around my children"), fact is, your entire world is now dictated by this tiny being who has a meltdown if you don't let them wear their shoes on the wrong feet, but is overjoyed at running away at bathtime.

You spend every waking moment trying to supervise every task and when you think you can quickly sneak off to the bathroom, you return a minute or two later to a mess (generally in our case it is the kitty litter tipped up or milk she's tried to pour herself) that takes up MORE time to clean up, by which time they have started up in another quest to decorate the house.

So if you've been through this stage, you know exactly what I mean when I say, I need a break.
It's not that I don't love my kids. In fact, its the total opposite - I love my kids so much that I put everything into them, rarely leaving any energy for me to focus on myself. By the time bedtime rolls around each night, all I want is to mung out in front of the tele in a little bubble and ignore the world.

So I'm at that point where I just cant wait to have the night off in 2 weeks for our 1st wedding anniversary. I will jump at any opportunity to have 5 minutes quiet time. So when I realised I needed coconut cream for dinner, I thought YES! I need to go to the dairy! (How sad is that?)

So I yelled 'BYE!' to the husband and kids, jumped in the car, and put it into reverse. Then I looked up to see wee Olive standing at the {locked} door, peering out and grinning. I wound down the window and could hear her yelling 'Lullooo Mummy!! Byyyeee Mummy!!! Lulloooooo!' and blowing smoochy kisses off her chubby hand while the other smeared some crap all over the glass.

And that makes it all worth it. Every ounce of frustration and annoyance that comes with being a parent is taken back in the knowledge that this small child trusts, that even after all of those hair-tearing incidents, you love them no matter what. To the moon and back.


My babies are my world. My life DOES revolve around them. Everything I do, is for them. In my last post I mentioned our goal to go take our family to Australia for the next nevus conference. This is in January 2015, and it is extremely important to us. It is not only important for my children and ourselves to meet others who walk a similar road, but it is invaluable for the information we can acquire for Olive's health down the track. With this information, and support from international organisations, we can also take the next step in building an officially recognised charity organisation in New Zealand for CMN. If anybody would like to donate to help us achieve our goal, you can do so by visiting https://www.givealittle.co.nz/cause/oliveschance. Please do not feel obliged to do so by any means, even sharing the page will be just as much help.

Thank you everybody for your continued support, it means the world to our family.

Sunday, 16 February 2014

Eminem played an amazing gig last night!

Apparently....I wouldn't know much about that because I didn't go. Haha (can you tell I am just slightly jealous?). Our family went to the hot pools instead, along with my sister and her family. The kids had an absolute blast! My older two had new snorkelling gear to try out and loved practising what they learn at their swim lessons with my sister and her fiancée's older girls. All the kids (including the two biggest kids - my husband and my brother in law) spent ages running up to the top of the hydroslides and coming zooming down on the mats, being hurled into the water at the bottom and fumbling around a sea of people to find the right way up. The bigger kids at the pools kept blocking the slides so that when the next lot of people came down the water would come gushing out, tumbling people upside down. Was hilarious to watch peoples faces as they came caning out into the sunlight.
Of course, after watching for ten minutes or so, Olive decided she wanted a go. So Eddie took her on the slide with him, and shared his mat. My sister and I watched, phones poised to record, expecting them to come out the slower slide. Next minute, Olive and her Dad come whooshing out of the faster slide, Olive being held high in the air so as not to go under the water.
'MORE!' comes her little voice.

Of course she wants more. Of course.

We were all over it by dinnertime and got out to get changed. In the changing rooms, I stripped Oli off and as I went to dry her she, being the mischievous toddler she is, ran off. There were a lot of people in the changing room, and I was well aware that my daughter was zipping around nudey rudey and she had a very very noticeable giant mark across her back that most doctors (let alone your average person at a pool) have never seen. I automatically expected some stares and whispers and as she whipped out into the corridor in front of a woman of about 50, I was anticipating a reaction of some kind from this lady whose view was the different back of my precious babe.

'And she's off!', was all she said, with a big smile at me - obviously someone who understood toddlers....a Mum to Mum smile.

I grinned, grabbed my baby and took her back to clothe her.

God bless that sweet woman, for normalising what I anticipate people making hard for my beautiful and naughty child. She made my day.

Monday, 10 February 2014

Ready or not....

As parents, we are designed to protect our young. It is the natural instinct that comes to us, generally (of course there’s the odd exception), from the moment our child is born. It is instinctual to protect them from harm and to love and nurture them. Of course, our own upbringing often comes into play with how we behave with our own children but the natural course is overall, to protect.

You are probably aware that Eddie and I never wanted to treat Olive any different to our other children, though it is actually inevitable that there will be differences anyway – as there are with each child you have, and their siblings. There are differences in how you parent your eldest and your youngest, your boy and your girl, your twins and your singleton and so on, whether we like it or not.

I’m not sure if it is the fact that Olive is my last baby, or because she has a difference, but I definitely feel super protective of her. In some ways, I am more relaxed in my parenting with her, (letting her climb things even though it gives me heart palpitations, or allowing her to have probably far too much chocolate!) but when it comes to trusting others with her care, I am not very good at letting go.

I let both my older two children cry it out in order to get them to learn to put themselves to sleep, instead of being fed or rocked to sleep. It was torture with Jaxon, and I remember crying on the phone to a friend while 8-month old Jaxon was crying in bed.

When Olive was younger, she would make herself throw up with the way she cried. If she wasn’t ready for bed, she would do this awful throat thing and make herself vomit throughout her bed. For us, letting her do this went completely against the grain of the Nurture side of parenting. So we didn’t let her do it. We let her get away with far too much – we still do! – And have learnt instead to read her signs, as opposed to us dictating when she goes to bed.

Jaxon started community kindy at 2.5 years old. Meisha was 7months old and whenever we dropped him off or picked him up, she would crawl around and play and paint as well. So when she turned two, it was her time to go off to kindy. They both thrived there and it gave them a lot of confidence with other people and in themselves.

With Olive nearing two, and being the social butterfly she is, we have been contemplating whether to enrol her. The kindy in question is not in our current area, we would have to drive across town but I know all the teachers and they know Olive from when she was born (Meisha was 4 years 8 months when Oli was born, so still at kindy for a short while).

Our issue though, is that there are not set age groups. With the 2 year olds are also 3 and 4 year olds. Which worries us because Olive is really active. She climbs, and runs and talks. Older children may mistake her for being more capable, and what if she fell and tore her nevus? We are always going to have this in the back of our minds, but we have decided right now, we are not ready. I think I will enrol her at the local kindy instead, which takes children at just over 3 years old.

So while we are not ready to let her go off into the big bad world on her own, we are ready for a bit more Nurturing. We feel it is a real responsibility as her parents to have an active role in the nevus community, as small as it is. Haley (Olive’s ‘same/same’ friend) and I are going to organise a New Zealand get together, and Eddie and I are going to try our best at getting our family to Australia for the January 2015 conference. It has been a goal of ours since Olive was born and we learnt about Nevus Support Australia and Nevus Outreach. But we always said we would not take her unless we could take the older kids as well, to avoid that ‘special treatment’.

So that is our 2014 goal. To get our family to Australia after Christmas this year.
 
 

Thursday, 2 January 2014

When all of a sudden, you realise that the condition you once thought would dominate your child's life, has in fact become a back seater in all the goings-on.

The Girl is almost two! Well OK, it's still a few months away but she is now 21 months and that is a lot closer to 2 than 1. She is a bright wee 21 monther as well. Olive is already talking in sentences of up to about 4-5 words. She has great manners and thanks people appropriately for anything they may give her or do for her . She apologises if she thinks she has done something wrong ('Oh sowweee Mummy'). She has grown up etiquette when people arrive to visit ('Hi Rach, come in!'). And she surprises us with the 3 syllable words she manages to pronounce to almost-perfection (delicious, attitude).

Olive is at a mischievious but oh, so fun stage in her life and it is starting to drive me bonkers, though I can't help but laugh. She is testing the boundaries, with the odd swear word thrown in mid conversation (always in context mind you! I really must watch my language more :-\), climbing eeeeeverywhere, running away when she is naughty, amongst other things.

One thing that infuriates me, is she bites shoes. Jandals, in fact. Meisha's jandals looked like a puppy had got to them, with all the knaw marks and chunks around the front of them. Then she started on her own. More chunks and bite marks. So we got them all new jandals for Christmas - you know, brand new, lovely clean looking new jandals. Except, after today, they are all brand new, lovely clean looking jandals with great chunks of the toe part missing.

Yesterday we rescued a young kitten and have made it a home here while we look for her owners. Olive has taken great delight in welcoming this kitten, Sadie as we have named her for now, to our family (as have the big kids). Olive bounds after her like a miniature ogre, stumbling and fumbling to touch this little ball of fur. She also tries to take some responsibility by helping with feeding Sadie...by putting kitty litter in her milk, and cat biscuits on the floor.
The 'help' aside, she is lovely with Sadie and pats her with a soft fat hand whilst nodding and repeating her mantra of, 'gentle, hi cat! Nice cat. Gentle...Hi cat! You right cat?...gentle. Niiiiice cat'. She likes to prepare herself for a hold by sitting down, getting her legs all in the right position and farting around for far too long and then having a quick 2 second hold before Sadie's tail scares her again and she is off to the next thing.

Amongst all her character building and quirky days, she has had a few rough days as well. Our New Years Eve was cut short as Olive came down with a fever which at the time I didn't know the reason for. It appears it was due to a new tooth erupting and was giving her grief, poor little mite.

She has also had a few instances lately where she has scratched her back. One was on my bracelet, another on my sisters bracelet and another on something unknown. All 3 times, her nevus skin has broken and bled. It has reminded us how sensitive and fragile it is. She is such a regular toddler and lives her life so normally that it is easy to forget sometimes a little extra care is needed with some simple things. In saying that, while these scrapes have obviously hurt her and she has cried, she is tough as guts at other times! She falls over and scrapes her knees, gets up and soldiers on.
There have been so many times lately where we would expect tears and sobbing, that I actually asked Eddie if he thought she felt pain! lol.

For all her funny, and humourous things she does and says, there is still nothing better than waking in the morning to this little face saying, 'morning Mummy!' and snuggling her tiny body into mine to spoon.