Bedtime chats....

"I love you. I love your hair and your eyes. I love your mouth and your nose." I kissed Olive's cheeks and forehead.

"Nooo Mummy!" She was grumpy tonight, and we were in bed chatting before sleep.

"I do. I love all of you. Do you love me?"

"No." She was adamant!

"Aww, don't you love MY eyes? Or my hair?" C'mon, kid!

"No."

"Why not?"

"Because I just love you."

I smiled and decided to be silly to cheer her up. "Do you love my nevus?"

She giggled and said, "you don't have a nevus Mummy! Just me!"

"Silly Mummy!" I said, "but some other people have a nevus. Just most people don't."

"Yeeeah coz I'm special aye Mum? Coz I have nevus on my back aye Mum?" She proceeded to pull up her pyjama's to show me her nevus.

"You sure are babe. Only some people have a nevus like you! And some people have one on their face, or their arm or maybe their leg. And sometimes people have an operation to remove their nevus."

She gasped! "Awww! Mummy that's sad. I don't want anyone to take my nevus away. I love my nevus! Nobody else can have it, coz it's mine!"

It touched me how passionate and emotional she was about it. This was the first time I'd ever mentioned anything to her about people removing CMN and to be honest I'm not sure why I even did! But her reply fills me with pride. To Olive, her nevus is the same as her nose, or ears, legs or arms. It is part of her body. To her, the prospect of somebody removing part of their body is unfathomable. Granted, she is just three years old, and her mind is pure and innocent and has no clue of the illnesses and troubles of life. But still, for her to be so energetically sad at the thought of taking her nevus away made me smile inside and filled me with a sense that we must be doing something right. She loves and accepts herself. May this continue long into her life.

Please don't read this as an insult to parents who choose removal. As I have said previously, I support all nevus parents decisions, though they may be different to our own. We all do the best we can for our children given our different circumstances. Because we have chosen to leave Olive's nevus in tact, our wish for her has always remained the same as the day she was born - to accept and love herself for who she is. For her to know that in a world obsessed with beauty and perfection, that everyone is beautiful and nobody is perfect.

The girl with the curl(s)

Every morning, when I tell Meisha to brush her hair, she resists. She tries to tell me she's done it (even though the birds nest at the back says otherwise), or she says she will do it in the car and conveniently forgets. If I try to do it myself, she cries and says it hurts. And she has straight hair that is actually easy to brush!

Olive, on the other hand, has longer, curlier hair that come morning, resembles someone from the caveman era. Yet she always lets me brush it when need be and never moans, no matter how many knots I have to drag the brush through.

Olive has had a few trims but never a full haircut. In fact, we've had to trim a few spots various times as they grow much longer than the rest.  I've spoken before about the hair being a characteristic of CMN and this doesnt appear to discriminate on any of Olive's spots! She was born with 4 sizeable satellites on her scalp and its amazing how different the hair on those spots is compared to the rest of her hair.  It is quite coarse and wire-y. It is darker than the rest of her blonde locks and when her hair is out, it falls wildly because of the different directions of the hair growth. The different tones give her hair that women pay a lot of money for!

As I said, she never moans when brushing time comes, which often surprises me as I would have thought it might be more sensitive due to ger spots. Her back is much more sensitive than her 'normal' skin, and understandably so - she has no subcutaneous fat layer so her skin is much thinner.  We've noticed things affecting her more regularly these days - if your nail scratches a little as you pick her up, or when she hid under her bed the other night and scraped her back getting out again. Thankfully she has only had 2 or 3 small tears, or scrapes that actually bled and even then it wasn't a lot at all.

She's pretty tough, this little girl. At just 3 years old and with such petite stature, she will try anything physically challenging, no matter how high, no matter how hard. She can hold her own against her big brother and sister and in fact it is often them who come crying that she has hurt them!  I know I shouldn't, but it's hard not to giggle to myself that my tiny mite has the strength to make big kids cry!

We've been cutting down on our sugar consumption recently and while I haven't noticed any behavioural improvements, I am glad she no longer wakes up asking for biscuits at 6.30am (and no, I most certainly never gave in but the tantrums that ensued were enough to set up a day pf frustration and short tempers!).

She has just been shifted into a shared room with Jaxon as Meisha was upset that she'd never had a turn at having her own room. Olive thinks this is fantastic because she gets the bottom bunk.  Jaxon loves to take care of his little sister so is happy with the arrangement, despite his room now being overrun by Peppa pig and baby doll accessories. Olive thinks she is quite the big girl being allowed to share with her big brother!

But even Big Girl's need their Mum sometimes. So I still lie with her every night to get her to sleep. We always have a little chat, generally about our day but sometimes she chimes in with something random and often as equally revolting - "Mum, we shouldn't eat poo aye?". But every night, after our chat, is always the same. I pretend to yawn, she catches it and yawns herself.
"I'm tired Mummy", she says, and turns over.
"Me too bub".
"Me too Mum. Hug me". And I do. And every night I smile to myself. My tiny terror with the attitude to give any teenager a run for their money, drives me bonkers most days. But I look at her beautiful peaceful sleeping face, with hair splayed all over the pillow, and hear her soft slowed breathing and I smile because I am the luckiest Mum in the world. I was blessed with the best children, and I am so proud to be their Mum.

Following the advice we give our kids...

While knowledge is in fact, power, sometimes it feels just the opposite. Knowing with certainty that somebody you love's time is coming, is an inescapable thought. We all know that everyone dies. In our heads we know this, but in our hearts no-body ever thinks it will happen to them. We all wish for our Mum and Dad to live forever. We wish for our Nana to still be sitting in her corner chair in the sun, giving us crude and outdated advice on life, when we ourselves are old. Nobody ever imagines losing a child, yet a large portion of people are thrust into the exclusive club that nobody wants to be a part of.
We all know that death is a part of life. But nobody wants to face it.

I have learnt a lot about my Mum in the last few years. In particular, I have learnt a lot more about her beliefs and I respect her for explaining them to me, even though us kids can be right arseholes sometimes and poo-poo things that we don't necessarily agree with. But Mum has opened herself up to us, and told us more about what makes her calm, what feels right for her, what she believes, and how she wants things done. I respect that. I think it is amazing that Mum is finding the beauty in the inevitable and I praise her strength and determination to have things go as she believes is the natural path.

The shock factor feels as though it's worn off after receiving the news, but I have to admit I feel like I'm riding a sort of neutral plateau. I feel as though I am just waiting...waiting for something ridiculously exciting, or something ridiculously heart-breaking. It's as though there's no middle ground for emotions, just the extremes. The kids are a wonderful distraction of course, with crazy day-to-day life with my three bundles of madness.

On Thursday Jaxon and I attended the funeral of a dear friend of ours, an elderly lady who lived next door to us at our old place. As we sat there listening to the loving words of her special family, I suddenly had the thought that we may have to do this one day soon. We might have to be the ones in the front row seats, taking turns at saying how incredible and precious our Mum was. Trying to hold it together and failing, the heart break written all over our grief-stricken faces. All I could think was that I can't, I can't do that...how the f*ck am I supposed to do that? How can we do that? I can't do that!
I actually had to remember the advice I had given my own kids when we told them about Mum - that it is incredibly sad and that we would feel extremely upset, but that it is part of life, it is natural and that everyone dies.

We may have to do that soon....not just with Mum, but with anyone I love. Anything could happen at anytime, we never know when someone's time has come. Everyone dies, and people do get through it.

I just don't want to have to....

***

Last weekend my sister and I sat and had a few rum and cokes together while her fiancé and Eddie partied with my brothers and my Dad. We talked about a lot of things, obviously one being Mum, and about losing people, and somehow the conversation turned to Olive. She asked me a question that I've only been asked by her and my Dad.
She asked, "Are you afraid of losing Olive?"

For those who don't know, people with CMN have an increased risk of developing melanoma and occasionally complications from NCM (Neurocutaneous Melanocytosis - deposits or lesions on the brain or spine. We have no idea if Olive has it as she has never had an MRI).

I told her the truth, that majority of the time I wasn't any more afraid of losing Oli than I am Jaxon or Meisha. That I buried that fear somewhere deep inside very early, because I knew I couldn't live every day in fear that there was something wrong with my child. That fear still surfaces at times, and it is mainly when we get the devastating news that another child with CMN has passed away. I admit that each time this happens, that niggly little feeling of "Are we doing this right?" turns into a real confronting question in my mind. Are we doing everything we can for Olive? Are we doing enough? Are we worrying enough? Are we worrying too much? Are we doing it the right way? Should we have an MRI? Am I vigilant enough with sunscreen? Are we right in choosing not to remove? Do I insist on enough from the doctors? Do I teach her enough? Do I teach her too much?

Parents doubt themselves all the time anyway. We all know we don't get a handbook with babies, and we sure as heck don't get one for kids with differences!

It's not often anymore that I have the deep conversations with people about the emotional side of having Olive. Most of the time it is about the medical side. As I said earlier, I can only ever remember my Dad and my sister asking that same question. I am open to all questions and will always answer as honestly and as raw as I can. I suppose because I don't often think about that side of things with Olive, when we talked about it, a floodgate of feelings were opened and it brought it to the forefront of my mind for a few days.

I think it is good to be aware. It is good to have knowledge. Knowledge is power. But sometimes, we need to play a bit oblivious to knowledge as well.

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

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

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

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

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

"No, Mummy! Silent Night!"

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

"Ok Mum, now Amazing Grace".

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Make memories.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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