Same, same

New Zealand's population is 4.433 million.

Giant Congenital Melanocytic Nevus affects 1 in 500,000.

According to those figures, there should be just a handful of people in our country living with this condition.
So what are the chances then, of meeting another person, with a CMN in the same location as Olive (a bathing trunk nevus), before she is 2 years old?

Personally, I think it's pretty damn awesome and incredible.

On Saturday, Olive and I got to meet a new friend. Her name is Haley, she is 19 and she has a nevus like Olive. And she only lives in Hamilton (For those who aren't familiar with NZ, that is only about a 2 hour drive from where we are in Auckland).

I think the meeting had much more significance for Haley and I, considering Olive is barely even aware that she HAS a back, let alone that the skin there is different to everyone else! She was content with rifling through Haley's wallet the entire time, and emptying what she could. She did try a few times to get me to pocket Haley's phone but I wasn't willing to be an accomplice.

This was also Haley's first time meeting another person with CMN, and I can only imagine how odd/cool/emotional that may have been for her. We discussed lots of different things, and both agreed that it is wise to hold off on the New Zealand Nevus charity. There isn't a lot of interest and momentum just yet in NZ for an association or foundation of its sort, so we figured we would wait a bit longer and see what happens. For now, we will piggyback on Nevus Support Australia, and Eddie and I still hope to attend the 2015 conference, though we are not sure yet how achievable that is.

 Through our chats, I learnt a lot about her journey and what her parents had been through when she was a baby and young child. She has overcome some huge hurdles in her life, and is an amazing person. Full of positivity and has a real 'Get On With It' attitude. I hope for her to become a good friend, and would love for her to be around for Olive to see someone else who KNOWS what it's like to be a little different, but is beautiful and happy and enjoying life.

Unfortunately, we both totally forgot to get a photo of them together! We will have to do it next time. For now, I want to thank Nevus Outreach and Nevus Support Australia for connecting Haley and I so we were both able to meet. Eddie and I never imagined we would meet another person as special as our wee girl so quickly after her birth.

I think the most touching part came just before Haley left. Olive often lifts our shirts and tickles our tummy's saying 'tittle, tittle!'. She sat next to Haley, and lifted her shirt. Just as she went to tickle her, she noticed her skin and went 'oh!'. Haley lifted Olive's shirt as well and said, 'look - same, same'.

Olive looked at both, grinned and said, 'same, same!'

Parenting young children can often feel mundane and a heck of a lot like Groundhog Day. Along the way, there are lots of rewards - when your newborn smiles, or giggles, when your toddler walks or cuddles into you; when your kid gets an excellent report and you beam with pride. The rewards are actually neverending, they are all of their own definition but ultimately it comes down to pride. Tonight I had a conversation with my Dad and told him a story. He said one of the most rewarding things as a parent, is when your child grows into an adult and supports you - in an emotional sense.

Today, my 6 year old did that for me.

At school pick up today, a good friend of my middle baby, Meisha, was playing with Olive. The girls all love Olive and cuddle her when ever they can. Today Oli had shorts on, and this little girl announced, 'she has a hairy spot on her leg!'. It took me absolutely by surprise. I forget that other people aren't used to it....and this was just a satellite! While my brain jumped through what to say, my dear beautiful Meisha replied with such busting pride, 'yeah! That's her nevus. She has lots. She has a biiiiig one on her back. And more on her arms. And those on her legs. They're her special spots!'. The little girl looked a bit stumped for a moment and then smiled, and carried on playing with Olive.


It is hard to explain to somebody who hasn't lived this, but I will try. Though we are absolutely at peace with Olive's nevus and we are used to it, there are still times when I am hyper aware of it, and of people looking and what they may be thinking. Like when I have to remove her top in the mall carpark because she tipped water all down it. Or when she does that rigid plank thing toddlers do when you try to pick them up and her top rides right up.
I realised tonight that on these occasions I get a little flustered and tend to work a bit quicker, perhaps to avoid people staring. I shouldn't be doing this, I know, but I suppose I am still not used to having to answer questions so I brace myself and almost expect someone to say something....nobody ever has. It is a complete over-protection act on my part, and today Meisha showed me how I need to react to people questioning the differences our baby has.

My kids drive me nuts. Absolutely bonkers! But I couldn't be more proud of them. All 3 of them are incredible little people and if I might say so myself, I think Eddie and I are doing a pretty bloody OK job.

The Power of Speech

At 18 months, Olive is a little Chatterbox. She can say plenty of words and every day see's her add at least one new one to her vocabulary. Some of these include bumbums (started as her word for gumboots and has graduated to cover all shoes), Moomoo (her sister, Meisha), Lily (her doting cousin), cracker (this is also a generalised one, and simply means she is hungry!), happy, nice, Daddy, Mummy......she gives most words and names a go, and a lot are recognisable, though some are a bit harder to figure out!

Hand in hand with her developing language comes her understanding of her surroundings. So we are starting on teaching her about her anatomy. So far she can point out her eyes, ears, mouth, hands, nose, hair, feet....and amongst these, she has learnt nevus! Or as Olive says, Meemis! If you ask her, 'Olive, where is your nevus?', she will respond by stroking one thigh (the hair is very thick there, but very soft) and grinning, saying, 'Meemis! Niiiice!' and then finding the same on the other thigh.
It really is the sweetest thing, and she quite likes the feel of it, which makes my heart swell.

Every parent is proud when their child learns something new - especially in these preschool years when their interpretation of what they learn can be quite amusing. We all love asking Olive to say or do things, and she loves the attention.
This particular thing she has learnt, that her nevus is 'nice', is something she came to on her own. We just taught her it was called her nevus, and because it was hard for her to see it, we showed her how to feel it. She thought it felt nice straight away. I love that. It is the most beautiful thing to me, seeing my gorgeous 18 month old daughter, who is different to the average person, so completely accepting of her difference. And loving it. I sincerely hope she always feels this way.

Speaking of love, I put my baby to bed last night.
'Night bubba,' I said. 'See you in the morning. Sweet dreams, love you'.
And I went to walk out.

A little voice quietly said, "lulloo Mum'.

Oh, to live in the life of  a 16 month old. To spend your day carting things from one room to another, trying your luck every 5 minutes to see if Mum may have forgotten to put the safety catch on the rubbish door (apparently there's a treasure trove in there!) and getting into the fridge as quick as you can to pinch the tomato sauce, have a quick lick on the top of the bottle before running away giggling maniacally. Throw in strategically placing pillows on the ground as a lever onto the couch, turning the TV off every time your siblings have it on, and walking into a room then suddenly side stepping like you are against an imaginary wall, and you have my Olive.

She is the funniest little character. I am always saying that to people. Everybody says how charming she is, and how crazy. She makes people fall in love with the beautiful and innocent way she says 'hi!' or 'Huyyow!!' to every passing person. Women sit and cluck over her and give her high fives and kisses (yes I have had to get over that one a little, when she is constantly asking 'mah?' for a kiss - Olive's interpretation of 'mwah!'). Old men stop and comment on her gorgeous locks. She demands a greeting from all the school Mums and at the supermarket she tries to tickle the checkout girls (yeah, that one made me turn a bit red).

The thing I love the most about all of the attention, is that it is for Olive, for who she is. Nobody can see her nevus. They don't feel sorry for her because she may look different. There is no sympathy there. Just pure adoration for a wonderful and charismatic baby girl. I am so incredibly proud of my darling daughter. She makes our world spin.

Lucky lucky white horse

I know they say it's not wise to count your chicken's before they hatch, but I have come to the realisation that we are so incredibly LUCKY with Olive.

She is 15 months now, and so far, we have had no issues with her nevus.  I'd like to say I have my fingers crossed as I make this statement, but you know what? We have already had the big lesson that 'what will be, will be' so I think that applies now as well.

I was so worried that we would have these other sideline issues that are known with CMN - overheating, itchiness,  NCM, tearing, to mention a few. I was terrified of the day she got chicken pox because I could just imagine the pox being so brutal on her delicate skin. But none of this has come into play!

This kid bounces off walls - literally. She is like an old drunk the way she toddles around with her pigeon toes pointing inwards, fat toes (they overlap!) gripping the ground....she is even attempting running! Though she seems to have her mother's genes (or lack of) for that particular sport...she too collapses after just a short while.
But the point is, she tries, and she falls and she bangs her back on the corners of walls and tables and benches. She donks her head on tables and bunks and bookshelves.
But we haven't ever had any issues with it damaging the nevus skin! Obviously as she get's older this may occur, on school playgrounds and the like. But for now, we have been absolutely able to let Olive be a normal healthy toddler. Because she is!

She is talking up a storm, she tells people to 'hang on!' and says 'buhbye' at the most appropriate times. I had to take her for a blood test yesterday and as they were trying to find her vein she decided that was enough so promptly squirmed her way out of my arms declaring, 'buhbye! buhbye!'.

There is never a dull moment in our house with this tiny little comedian lurking. We have all (re)discovered the joy of BOO - leaping out at her from beyond doorways and staircases, terrifying the little mite into fits of giggles.

If you are hungry, you will be sure to find a cracker or bickie stash in a multitude of hiding places - the toy box, Olive's car seat, her wooden cart, and apparently Mum's bag contains toast crusts in the side pocket.

The latest game is Ta. Olive gives you something, kindly saying Ta as she does. She then demands it back - 'TA!'. Give it back to her, she smiles. Then insists, no no, you have it - 'ta!'. If you say no, the 'ta' gets more insistent, as do the pushes, until you suddenly realise there is no getting out of this 'game' now...quick! Distract her with crackers!!

She has also learnt (quite quickly in my opinion!) that the rustling sound, it normally means treats...so when she hears the rustling of a packet, little feet come running with that all-too-insistent 'TA!!'.

Yes, I know she is JUST 15 months and we more than likely have lots of the discomforts and 'problems' of CMN in our future, but the lack of it from her birth until now has made it so much easier for us to enjoy our baby and get to know HER, and not her nevus.

She is an old soul, my girl, and she has been given to us (all, not just Eddie and I) to teach a multitude of lessons, the main one - Enjoy Your Children <3

I had forgotten what a fun age this is - the second year. The first is incredible - the changes from birth to 1 year are amazing. And then baby becomes a toddler and the fun increases. Olive is now 14 months old, and still very very much a baby but ohhh what a funny little person she is.

She has just taught herself to walk! Great achievement! Earliest of all my kids, and she takes great delight in stumbling around the house in what appears to be a drunk stupor. Her little bambi legs seem far too little to hold that belly up!

But somehow she manages it, and she is awfully proud of herself. She likes nothing more than seeing people's reactions when they first see her walk - Pop, Aunty, Grandma. Once she see's them go, 'hey! oh my god! yay yay!' she takes it as her cue to show off, and does so by toddling faster until she collapses in a tiny squishy heap.

Lots of new words are coming out of her mouth as well. Shopping takes twice as long these days because Olive yells 'hi babe!' at every passerby. Other shoppers relish in this wonderful little girl who looks far too little to talk like that!

Olive is the dictator in our house, marching around and bossing everyone about. You can often hear her calling somebody - 'MUUUUUUUM!! DADDDDDYYYYYY!! MEEEMEEEE!! (Meisha) DAKDDDDYYY (Jaxy, lol)'.

She charms the pants off most people, and has friends everywhere she goes. Although the other day was a new experience. I went to an appointment for myself and had to take Olive. She had just woken up so was a tad cranky. After screeching for a good 10 minutes and chucking any toys we had the audacity to give her, I gave her my wallet to play with (figured taking the cards out one by one would consume a good chunk of time).
She promptly pulled all the innards out, and then continued to screech. So I let her out of the pram...she was quiet! We got on with the appointment. What a good girl she was!

And then I realised she had found the woman's wallet. And pulled EVERYTHING out. The money, the cards, receipts EVERYTHING.

I don't think she charmed that particular person.....

Along with all the charming, and uncharming is her grizzles. She has been working hard and popped out a third tooth! A fourth is on it's way, and it may explain the temps and runny nose, as well as condensed grumpiness that we have all experienced with little Miss today.

Fingers crossed it passes soon anyway -  on Wednesday we have our next 6-monthly check with Olive's dermatologist. I don't feel there are any changes, but it is reassuring to check in with a professional and make sure everything with her looks OK.

This little girl lights up all of our lives. I love seeing the love her big brother and sister have for her. I was talking with Jaxon the other night about feelings and I asked what makes him happy at home. His answer?
Olive.

So the first year is over. Done and dusted, now we move into toddlerhood. The first year was a big roller coaster of emotions - shock, grief, overwhelming happiness, worry, fun, pride - not to mention tiredness (sleeeep child, sleeep!!).
I feel well settled now, in my role as Olive's Mum and as the carer of this wonderful owner of such an intriguing rare illness. Sometimes I feel as if we are so at peace with it, that we maybe even forget to check it as often as we should (bad mum!).
We are so used to seeing it, on her nakey bum or back, that when I see a 'clear' baby back it seems as though something is missing, lol.

Olive is progressing and developing right on par with others her age and we have no concerns whatsoever at the moment that there is anything going on 'inside' that shouldn't be.

She is a blimmin fast crawler, chasing her brother and sister up and down the hall, or racing to Mum or Dad for a quick snuggle before racing away again.
Clever bunny has even started letting go of furniture and taking some steps across the room. It does help if she has a focus - Mummy, Daddy, chocolate...yes, she has discovered the joy that is chocolate. She will sniff it out and squeal and carry on until she is allowed a minute taste.

Her vocabulary is growing each day, and she loves to announce to her siblings 'BAAA' when I ask if she wants a bath.

She has finally grown a tooth, and surprised us all when the top one appeared the other day as well. So she is now also the proud owner of two half teeth, which she clamps together and taps them on anything she can, to make a noise. Such a wee sweetheart though, she won't bite if your fingers are near - just gently puts her jaw together and then smiles broadly to show you how proud she is of her newly acquired chompers.

Along with the new teeth though, has come a few night wakings - they must be giving her grief, and all she wants is cuddles. I'm down with that.

We are all absolutely loving this age and stage - still very much our baby but a very interactive one. Giggling, talking, clapping, waving, laughing at her own jokes (namely, pulling my hair, or saying goodbye to Aunty and then Aunty drives back up - this is hilarious apparently!).

So there isn't much to report on a medical front, but any chance to brag about and show off my beautiful third love.

This is her having a blast with her Daddy at our wedding.