I love birthday's. Not just my own. In fact, I enjoy my children's birthday's more than my own. I love choosing them gifts I think they will love.
I let them choose whatever cake they want in the whole world and stay up till Stupid O'clock trying my very best to create it for them. I spend far too much money and time making decorations and food for their parties. I love letting them pick whatever they want for dinner on their birthday. This year Olive has impressed me by telling me, 'lets just have something healthy mummy, coz all the party food will be so sugary'.

Olive is having a Strawberry Shortcake party this year, with her favourite friends from kindy and the kids school. I have spent the past few weeks scouring the shops for Strawberry Shortcake themed decorations and toys and gifts. Which is damn near impossible by the way - it seems Frozen is the in thing these days and Strawberry is out. So I have been improvising and making my own instead. May not be perfect, but the love and intention is there!

There's an app on Facebook called 'On This Day' and it brings up your memories and posts from the same day in previous years. I love it. Most days there is something which makes me laugh all over again. Every now and then, a previous post of mine comes up and the feelings I felt come flooding back too. Especially when it comes to Olive.

When you're a parent, it's quite normal for each day to merge into the next with no definitive occurrence or event to mark it's place. Actually, I think it can be quite normal for that to happen even without kids. The monotony of work, children, housework etc - it can all be very darn boring and not very eventful.

So reading my past posts, in particular in Olives first year, makes the emotions surface again. Though a lot of them may be what people generally consider as negative emotions - fear, anguish, anxiety, sadness - I don't see them as that. I see our time with Olive as the most joyful and educational of my entire life.

The last week has resurfaced the posts from 2012 which lead up to Olive's birth. I talk a lot on here about Olive's birth. It was such a turmoil of emotions, that were incredibly hard to deal with. It took me a long time to mentally compartmentalise all the varying emotions and sometimes I still struggle with it now. It can be hard to know sometimes, if I worry because she is my daughter, or because she is my daughter with a nevus.

The lead up to Olive's birthday each year is a real reflection on how far we have all come. It can be real roller coaster - I get really excited for her, having fun at her party, the excitement of opening her presents and having a special day just for her, being proud of how much she has grown in the year since her last birthday. But there is also the overwhelming remembrance of the early days. Her birth, and her being born with CMN, was such a definitive experience in all of our lives, that not just the memories but the emotions are imprinted within me on a hugely deep level.

When she was a newborn, I couldn't envision her as a toddler, or a school kid, a teenager or an adult. She was just my sweet baby girl who I was fiercely protective of, and determined to make her life the best it could be,

None of that has changed. I still can't envision her as a teenager or an adult, but I am clearly seeing the darling little girl she has become. Not only is she beautiful in her looks, but also in her heart. She is a caring and compassionate person who notices things about people that other children her age would look straight past.

My Olive is daring, and determined. Her sense of humour outwits many adults - she is an old soul and I'm sure she has had coaching for her jokes from my Poppa (he passed away when I was 4).

This sweet baby girl, who at one time in her life used to shout, 'hi!' and 'hey bro!' to strangers in the mall, is shy and cautious around new people. She is confident in who SHE is, but not so much in who others are. Once she gets to know you, and learns you are worthy of her time, she will be a good little mate who will have great conversations with you and make you laugh genuinely.

This little girl, my daughter, my last baby, is a person who I am insanely proud of. She is the last piece to our family puzzle and we all adore her to the moon and back.

Happy fourth birthday for tomorrow, my sweet Olive.

Happy Rare Disease Day!

Today is Rare Disease Day! A day for people all around the world to celebrate their uniqueness and raise awareness on the less talked about diseases and conditions that they have.

Before Olive was born, I had no idea there was a day dedicated to rare diseases. I never really thought twice about statistics of things affecting people. I was in my own quiet, oblivious world, with a touch of knowledge about a few different things.

Since Olive was born, I have read, read, and read some more. I have asked questions. I have gone looking for help and advice. I have educated myself as much as I can, within my current state of mind, about CMN and am looking more and more for further information on CMN.

Though I find myself to be more knowledgeable on CMN than most doctors and nurses I have met, there is still so much to learn. Because it IS rare, there is further studies and research findings making their way to the surface continually. I find it fascinating. I find the science behind the condition so intriguing and am fascinated at how the human body works.

I have always considered myself to be of an average intellect, and never had the confidence to dream of myself amounting to much, career-wise. I can actually hear my Dad's voice telling me off as I write this - he always says I am too hard on myself. But it is the truth, and just how it has always been. I have always been quite shy and this affected my confidence.

If it wasn't for Olive, I would not have this new folder of information locked in my mind. I don't imagine I would have furthered my understanding of how people who are different or rare feel or think as a reaction to how others treat them. I have had a compassionate streak in me always, but I never used to actually sit and think about how someone else might feel in a situation. I am ashamed to say, I never used to think twice as a teenager about making fun of someone behind their back with my friends.

Olive has changed me. She softened my edges but also sharpened my defenses. She has taught me what being an advocate for my child actually means. She has taught me that beauty comes in all shapes and sizes. She has changed the way I see the world. In my quest to be the best same-sex role model I can for my girls, Olive has taught me how to stand up for myself, my family and for things I believe in.

I can still be a pushover (in my nature I guess!) but I am less likely to see an injustice go unmissed these days. I am proud of that. I am proud of my daughter for teaching me so much without even knowing how she did it, but just by being her.
I have had a lot of conversations and messages from friends or family over the last few years telling me how Olive has changed the way they view certain situations, people, or even the world. This makes my heart beam with pride and love for my little darling.

My sweet, one-in-half-a-million baby girl.

Happy Rare Disease Day!

Admitting our personal failures with our parenting can often be a tough thing to do. For me, I'm one of those people who always sees my f*ck ups. When people tell me I'm a good mum, that little voice in my head says 'yes but you didn't see me go banshee on them this morning.'
When people tell me my children are a credit to me, that voice tells me, 'but you don't know that they literally watched TV all day today.'
There is always that niggle that I am completely screwing my children up somehow. That when they are older, all their misgivings and things they fall short on will be a direct correlation of my parenting them when they were young.

I don't always try my best. Some days I know they shouldn't have two more cookies, or play another hour on the iPod. Some days I know I should stop Olive from bathing her Barbies and the whole bathroom floor, or that I really should make them have a bath. Some days I know, and I choose not to care.

Everyone has those days, I know. Except I've noticed that those moments of giving in and saying yes to placate the short term are growing closer and closer together - especially with Olive.

She seems to get away with murder. For so long, she was an adorable little toddler with a cranking attitude - and we encouraged that. We encouraged her feistiness and allowed her to be headstrong because we always figured she would need these qualities when dealing with assholes or bullies later in life. And I was proud of her determination. I relished in her ability to hold her own with the older kids. I celebrated her stubborn independence.

And now she is almost 4. She is still all of these things, plus a whole bunch more. She whinges, she moans, she cries, she says no to everything, she doesn't do as she's told, she doesn't care if she's in trouble, she won't sleep on her own, she pees where she shouldn't, she doesn't eat what she should, she refuses to use things the right way (namely the toilet - instead leaving the seat up and sitting with her butt almost touching the water!), she dances when she's meant to be eating, she walks her feet up the wall when she's supposed to be sleeping. She says 'I love you more' whenever I say 'I love you'. She runs to hug me when I collect her from kindy, she says funny things all the time, when I lie with her to get her to sleep she says, 'hug me mummy.' She sings songs while she plays. She sings songs in the toilet. She loves me painting her nails. She cuddles me and tells me I'm her bomb-diggity.

Do you see my issue? My sweet little girl fluctuates so quickly from a non-compliant 3 year old to a dear wee girl who loves to please and who beats her drum to her own tune.

I struggle with this. I struggle with discipline with her and struggle daily with the small battles. It's all very well for people to say choose your battles, but I already feel like I do! And then I reflect at the end of the day and feel like I let her get away with far too much!

I certainly remember 3 being worse than the Terrible Two's with Jaxon and Meisha, so I guess it could definitely be a case of that, but by golly I don't recall them being as defiant as Olive! I know this probably reads as a very negative post, and I suppose it is. There is a lot going on for our family at the moment.

The school holidays are almost over, and last Sunday Eddie fell off a skate ramp and shattered his shoulder blade. He requires surgery and at least three months off work. Thankfully ACC will cover 80% of his income but already being a one-income family, this is still a big blow to our daily living. Not to mention the pain he is in and his required recovery and physiotherapy after surgery.
He can't do much at all right now, and even though I will always stand by and step up, it also puts a lot more responsibility on me. Everything is down to me now - he only has use of one arm so cannot help with household chores, cannot drive, cannot pick Olive up, cannot help with bathing her, cannot lie with her to get to sleep, cannot cook, cannot even properly shower himself at the moment. -You get the point. And this is not a moan or a put down of my husband, I love him to pieces. I'm just scrambling to make sure everything is taken care of. We are getting there, and once school is back and his surgery is done, we will find our feet even more.

I guess today, after a very long week, I finally sat up and took note of the effect Olive's behaviour has on me. And it's not a good one. It is stressful and frustrating and I need to help her change it. So very soon, I think we will be bringing in a proper Time Out spot, and perhaps giving a Star Chart a go. If anyone has any other ideas, I'm all ears!

For now, I just want to get through the next few days. It has been crazy hot and humid here in Auckland, so I think swimming at Grandmas may be on the cards tomorrow. Then it's my sweet Dad's birthday on Sunday, so we will go and celebrate with cake! He is awesome and is going to have the kids that night, so I can take Eddie in to the hospital on Monday morning at 7.30am for his surgery.

And then we will make the plan for the next few days. I think taking it slow is the best bet at this stage - if I think too much about all the things that need sorting and addressing, I think I might just cry!

And right now, I am going to go and kiss this beautiful little face and whisper in her ear, "I love you more."

Summertime and the livin's easy.....

Good old Sublime. Summer tunes, lazy days, picnics, beach, sand, sun.....all fun and games, but Summer presents a new set of issues when you have a kid with CMN. There is the very real risk of melanoma, overheating, sunburn on already very delicate skin; not to mention more body exposure with swimming and beach days, and lighter clothing.

Sunblock application should be vigilant with everyone, especially children and especially CMN skin. I have to be honest and say I still can't believe the amount of adults who let themselves get burnt to a crisp in summer. The effects of sunburn are well known in this day and age and it baffles me that people neglect to look after their bodies with a simple solution.

My children are well aware of what risks sunburn poses, both now and later in life. Five or more sunburns doubles your risk of developing melanoma. The sun is crazy hot in summer and it doesn't take long to burn. You can now get sunscreen in easy to apply spray bottles, and lots of different kinds for children and adults alike. Don't forget the good ol' kiwi mantra of Slip, slop, slap and wrap! Slip on long sleeve light clothing or under shade. Slop on some sunscreen. Slap on a hat. And wrap on some sunnies.

We use a children's water babies sunscreen with an SPF of 50 for Olive and the kids. We reapply throughout the day, and they all must wear a hat in the sun. Thankfully school and Kindy apply this rule too and the kids actually aren't allowed outside to play unless they have their hat. We also encourage them to spend time inside or under shade in the middle of the day (it is school holidays here at the moment).

We just came back from a holiday at our good friends beach house and man, the weather was amazing! Kids were at the beach every day, they got to go on the boat and on the sea biscuit. They absolutely loved it, as did we. We also went to the beach the other day with the fam and again we all had a blast.
Olive's in the phase of changing her clothes 15,000 times a day at the moment and with beach visits this only increases ten fold. We've had quite a few times now this summer where she has completely stripped off on a crowded beach, and run around naked looking for more clothes. I'm still hyper aware of people staring at her back when she does things like this, and I wish I wasn't. I feel like I should have these types of circumstances under control and shouldn't give two shits if people look or not. Instead, I try to zone out everyone around me and concentrate on treating her just like I did with the other two - making a move to cover them up in order to avoid the sun and people looking at the baby booty flying past them. But in my efforts to act as calm and collected as I can, I feel I over-compensate and I worry that I act too quickly and come across as ashamed or embarrassed by my child. Or I worry that I take too long covering her up, making it look as though I'm trying to show her off.

Then I worry about these small instances well after they are said and done - I guess I feel like I should have this down to a tee now and that things shouldn't worry me anymore. But the more I think about it, the more I realise this is merely our 4th summer with Olive and only our 2nd or 3rd where she's done things like undressing herself and running around the beach.
So I AM still learning. I'm learning to just get on with it and trying to block out the thoughts of whether people are looking or not. I mean, even if they ARE looking - who cares? If they want to ask me about it, I'm more than happy to engage with them for an hour or two and tell them all I know about CMN! (Haha!)

I guess these types of issues are my own issues and stem from my own lack of self confidence. I hate being the centre of attention and don't like all eyes on me at all - how I got through my wedding day, I'll never know!

I don't want to teach my girls my insecurities though. I want them both to be more confident than I ever was, and embrace and love themselves more heartily and fully than I ever did. But how do I teach my children these things when I'm only just discovering these things myself now, at the ripe old age of 31?

Parenting gets much more 'conscious' as you venture out of the baby stage. It's easy enough to do all the things like feeding, changing, burping, playing etc when they're little and then suddenly you realise they are little people and a huge portion of who they will be comes down to you and the morals and lessons you teach them. That's a huge responsibility! And one that, in my opinion, comes with conscious thinking and careful consideration. And I'm not doing the greatest at coming up with all of the solutions right now! I suppose it is a work on progress and one of those lessons that it ongoing.

Speaking of ongoing, as you all know Olive has ongoing care in regards to her nevus. She has annual check ups at the hospital with the dermatologist who checks her nevus for changes (much like regular mole checks) and monitors her in general, in regards to her CMN. Tomorrow morning we have her appointment, which I'm sure as all the other CMN parents know, invokes it's own anxiety in it's own right. Even though Olive is absolutely fine, and is bright and clever and learning so much, there is still the niggle that there is something gone undetected by me and Eddie. I suppose this is also something I will get used to each year as these appointments arise, and hopefully in years to come the nerves will be a lot more settled before each one!

Twenty fifteen is rounding off to an end. It is 4am, a week before Christmas, and I am sitting in the gentle quiet as my family sleeps, reflecting on the past year.

I find that every year I do this, and I feel ready to see the back of each year and welcome in some good in the next. When I put down on paper just what this last year has entailed, it has been such a mash up of overwhelming emotion that I feel even more ready to just say, "see ya later 2015 - rock on 2016!"
Except the fact is, nobody knows what the future holds - what if next year is harder? Often when you reflect, you ask yourself, "how the hell did I get through that?" and you actually have no idea what made you keep on keeping on.

We've had some pretty majors happen this year. A year ago, my family was planning our Indian Christmas for mum who had missed out on her trip to India because the tumour in her brain had been found a week before she had been due to go, and then she had brain surgery the day she was meant to fly out.

A year ago, on the 23rd of December, we had packed up our house and moved to a new one.

In January, Eddie and I took the kids on our first overseas family trip and went to the NeSA conference in Adelaide.

At the end of January, my dad had his 60th birthday.

In April, we held our second Nevus NZ family gathering and met new friends we never knew we would have.

In May, my baby sister married her soulmate at their surprise wedding.

Two days later, we found out that the tumour had grown back in Mum's brain and she was told she had between 7-12 months without treatment.

At the end of May, we said goodbye to a dear friend, our elderly neighbour who had lived next door to us in the house we lived when Olive was born.

In September, my sister was admitted to hospital and had surgery for appendicitis.

The next day, my husband left for the trip of a lifetime to Tahiti with his mates.

That same day, my mum had her second brain surgery.

At the end of September, my husband left his job of 7 years and started a whole new career with my brother in law.

In November, mum underwent a 10 day course of targeted brain radiation.

Amongst all of this, we all turned a year older, Olive started at a new kindy, we've had celebrations, we've had feuds. We've had illnesses and we've had quiet times. Mum and Olive were on TV, people donated over $26,000 towards the melanoma treatment Keytruda for Mum.

And now we are in December, a week before the fat man in red turns up, and I am actually wondering how on earth I haven't yet found a grey hair.

To say that 2015 has been a roller coaster would be an understatement. Emotions have been running wild with all of us, and I find personally that the constant up and down of emotions is taking it's toll on me. I am exhausted. There is never any downtime as you get older, especially with young children, and that is taking it's toll on my body and my mind.

So I would like to make 'taking care of me' my New Years resolution. And I am starting early, by having my hair cut this morning and going out for some drinks tonight with some wonderful parents from the kids school. A year ago, I would have found an excuse not to go. No matter how much it appealed to me, my anxiety would have taken over and told me that it was too cold, I was too tired, the kids needed me, it wasn't fair on Eddie - anything to make me not go. And I wouldn't have.

But now that I have my anxiety under control, I am going to go out and I am going to enjoy the heck out of it. I am counting down the hours until I can leave!

We are going on a short holiday this Summer too, with good friends and their kids. Our first holiday over the Christmas break in many years as Eddie used to work through. I am really looking forward to it, and am grateful we can give this to the kids.

Olive has her dermatologist appointment in early January and I am not expecting any issues to arise. She is doing wonderfully, and we have no concerns.

Though this year has been more than tough, there are so many positives that have come out of it. I have made a bunch of new and awesome friends. My kids are gaining more independence and they are fast approaching the next chapter of their lives.

Eddie and I are stronger than we have ever been and our teamwork seems to be paying off, with each getting a bit more time out, and the kids respecting that both Mum and Dad deserve that.

I appreciate all I have, and am so grateful to all that everyone gives me - love, support, encouragement. It all makes my life richer.

And the best part? Is that on Monday this week we had news that the tumours in Mum's lymph nodes and lung have gotten SMALLER. And no sign of disease in her brain. Best present ever.

What is it about the connection women have with hair? A vast majority of us have longish hair - or at least hair that is cut into a style, not shaved. Then again a vast majority of women remove all (or most of) our body hair. I remember shaving my legs for the first time in intermediate. I hid it from mum because she wouldn't let me do it. But all the other girls did it, so I should too right? I think I shaved my armpits as soon as the first hair sprouted and have done ever since. Girls shave/wax etc their bikini area much more these days than when our hippy parents were young.

In general (and yes I'm well aware this isn't all women I am talking about), hair on your head is long without a trace to be seen anywhere else - other than your eyebrows!

For some reason, the hair on Olives nevus has always been what has made me the most sad. In today's world, excess hair is often viewed as gross or dirty. Our logical mind knows this isn't actually the case. Hair is to protect our body. It's there for a reason.

The other day I got a text from mum. She has just last week completed her radiation therapy. The text read, 'my hair is falling out.' I felt a sudden pang. She's been doing so well, with very minimal side effects and has mostly just been going about life as normal.
This was another stark reminder of what she is going through. Mum seemed fairly nonchalant about the whole thing when I went to see her, but it was a very noted experience for me. She wanted the patch of hair that was falling out gone, so she sat on the floor, me behind her, pulling great wads of her hair out. To say it was strange is an understatement. Mum laughed to my sister that it affected me more than her, but it really did. It felt like an intimate moment where a brave, strong woman's body starts succumbing to the evil of the cancer. To sit there, softly pulling my mums hair away from her head where a big scar lies from her two surgeries was sobering to the point of wanting to cry. I didn't, because it also felt as though I was the only one feeling the sadness. My ma is so accepting of each step in her journey - to her it was just what happens when you put your body through such dramatic and harsh treatments. To me, it was a stark reminder that my mum has cancer.

Since then, I have been thinking a lot about this hair issue. About why the hair aspects of both mums and Olive's journey affects me so much. I don't know if I quite have it figured out but I assume it is because of the connection in my own head, embellished by society as I and other women have grown from young women to adults,  between hair and femininity. It has made me consider what I let my girls see - they've always wandered into the bathroom while I'm in the shower, have seen me shave my legs etc.
Inadvertently I have been teaching them the same thing I was taught by the world around me - that beauty and girliness comes from how you look. This simply isn't true. As I have re-evaluated this small part of life, I have come to the conclusion as I have many times before with other issues, that our children see us. They watch us, they learn from us, mostly subconsciously. It's not all about what you say. It's what you do that matters.

I am going to try and be more mindful with the messages I send my children with what they see. That's not to say I will stop shaving my legs though!

"Oohhh does she have eczema too? My son has that, really bad!" Asked the dental nurse.
I was confused for a second, wondering who she was talking about. I looked back and saw her watching Olive's legs as we walked down the stairs in front of her. I stopped and leant down, rubbing behind Olive's knees, feeling for some dry skin I must have missed. It took just a further fraction of a second to realise she was referring to her spots. I felt silly, as though I should have known instantly. I straightened myself up, took Olive's hand in mine and continued on the stairs as I told her, 'no not eczema, a rare skin condition, affects 1 in 500,000 blah blah blah' and did my well rehearsed spiel about CMN.
We stood talking for a further few minutes once we'd descended the stairs. She told Olive, 'wow, you are a very special girl!'

Her parting words to Olive struck a cord with me and I've been mulling it over all evening. I like what she said. It made Olive smile, it made me smile and it turned a brief conversation about a little girl being different into something positive. So often I come away from a new 'teaching' of Olive and CMN and feel a bit low. It is a regular occurrence for us to be telling someone about it, whether it be a fellow kindy or school mum, or a nurse at the doctors surgery, or somebody else in our travels. I am used to explaining it and I am good at explaining it. But I'm still learning how to deal with reactions.

The most common response, I have to admit, is the person saying, 'oh but you're still beautiful!' to Oli. I know this is meant with the best intentions as a way to placate a young girl and assure her that her appearance is still measured. I am well aware these people mean no harm, and are only trying to make me, Olive's mother, know that they don't judge and that they accept.

But it still leaves a bitter taste in my mouth. A person's looks are not what defines them. Eddie and I tell our children they are beautiful and handsome, but we also tell them they are strong, clever, passionate, funny, caring, loving and persistent, among the thousands of other traits which make them who they are. Saying, 'but you're still beautiful' kind of implies that just because there was a slight glitch, there was a chance that my daughter might not be good looking.
I've often read articles written by grieving mothers about 'what not to say to a parent who has lost a child', or 'what not to say to the mother of a child with downs syndrome' and so on, and I've often come away feeling guilty and thinking, 'shoot, what DO I say then?!'
It feels like in some situations you're damned if you do and damned if you don't. If you don't acknowledge the obvious, they will think you don't care. If you do acknowledge but say the wrong thing, they'll think you ignorant.

I would like to think I am in neither of those groups yet I can guarantee that I would have come across that way at least once to another mother or father. You see, sometimes people want to ask but just don't know how.

Sometimes people think a good approach is to do it the way this particular nurse did today - making an assumption, (whether she knew it was incorrect or not and was just trying to personalise it, I don't know) and bring it back to them (how she said her son had it - an attempt to make the person being asked feel more comfortable talking) in an effort to open the channel of communication. This was actually pretty effective this time around. But I also know of a lot of people with either CMN or scars or various other birthmarks - port wine stain or hemangioma etc who are often asked if they have burn scars or other injuries, chicken pox or other ailments. And they get offended.

So it leads me to wonder if delivery might play a big part in these exchanges and how well they are recieved. Perhaps peoples tones imply an air of judgment or negative assumption.

This is just speculation, of course, because I have never had to endure endless questions about the way my body is. I did always get questioned on my name though (is that your real name? What does your name mean? Where did your parents find it? Is it short for anything?) and being a very shy young girl, I hated the unwanted attention!

I would never want to make somebody feel uncomfortable with asking about Olive - I view it as an opportunity to teach and raise more awareness of CMN - but I wonder if a lot of us need to think before we speak, me included.
If you always deliver with kindness, the chances of being offensive are lessened. I had a conversation with Olive a few weeks ago about this very topic and posted about it on my Facebook.

And so begins the lessons in compassion and humility for Olive.
Today at the supermarket, we passed a man who had one leg. Olive was quick to point out that, 'hey! That man has one leg! Awww where's his other one?'
I responded by telling her that some people are different in many ways and that the man may have had an accident or perhaps born that way.
...

She felt sorry for him and said, 'least he has sticks to help him aye mum?' (He had wooden crutches).
The conversation stopped quite abruptly when we got to the ice cream section lol.
In the car, she said, 'mummy, that man reeeeally only had one leg aye?'
I told her yes he did.
She was quiet a minute then said, 'well that's a bit different!'
I hid my smile and said, 'yup, everyone is born different but we're all the same really. Sometimes some people just look different - like the man with the one leg, or you with your Nevus, or sometimes other people have different things too. But we shouldn't treat people any different because we're all just people aren't we?'
She nodded and said, 'always be kind aye mummy?'
I told her yes, 'always be kind and treat others how you'd like to be treated. You wouldn't like it if people stared at your Nevus would you?'
'No mummy! That would be mean. But I would just say, that's my Nevus!'
Proud of my little bug. She is learning about people and reactions and heeding all the advice that Eddie and I teach her.

At just three years old, Olive is learning advanced lessons in compassion. I am not a perfect parent by any stretch, but I am definitely proud of the kindness and thoughtfulness-for-others that all of my kids display.

Just the other day, I was chatting to a CMN mum whose 6 month old baby has been developing satellites thick and fast. It took me back to when Olive's started coming in. It is easy to get complacent with your child's condition, as it very quickly becomes your norm. This lovely mother wanted to know things about the sats appearing and so I asked Olive if it was ok if I take some photos of her Special Spots to show this mum for her baby, who also has Special Spots. Olive was delighted! She was very proud of herself for helping and she started pointing out her favourite ones. Her favourite is the one on her left hand on her ring finger.

There is a real comfort in being able to chat with people all around the world, so easily about the one thing that brings us all together. I am infinitely grateful that our daughter was born into an age of technology where we can connect with others at the push of a button and receive and give help and reassurance. It has made our journey of acceptance and education so much easier.

We were blessed with a whole new family when Olive was born - our CMN family, and when worries arise there is never a shortage of support. When we went to Adelaide, we met Alycia and Clint, the parents of Jaxon who has a BTN. Jaxon has just celebrated his first birthday and very soon will be undergoing his first surgery for partial removal. I would like to share with you a video that Alycia and Clint made to help raise awareness and tell their families story.

The World's Longest Triathlon