Saturday, 24 December 2016

Another year draws to an end and new beginnings are upon us. At least, that's what we all say at the end of each year and the new one looms ahead, with fantasy promises in our minds that the next will be better than the last.
But the truth is, the rollover from one year to the other marks just that - time rolling by, people getting older, lives being lived. New beginnings happen at any time and I believe they are more a state of mind than a state of time.
In saying that, as per every other year, the days leading up to Christmas and new years always bring out the reminiscent in me. It's a time for reflection. A time to analyse how we've lived the last 12 months and how we might want to live the next. And if we do a re-evaluation each year,  that can only be good. Reflection can be the instigator for change.

When you are in the moment, living, experiencing and sometimes enduring life, we often don't recognising how hard or how enjoyable that time is. We only see it for what it is after the fact, and that is when we recognise just how strong we may be.

Each year I look back and think, 'how the f *** did we make it through all of that? !'
This year is no different.

It started with a bang. An accident involving Eddie, a skateboard ramp and a huge drop resulted in him having a shattered shoulder blade, surgery and 6 months off work. This left us pretty financially crippled, especially when at the end of that we had to move, and with the house prices in Auckland, has seen us paying $100 more per week for rent.
The bright side though, is our new house is much bigger and we can escape from each other and the kids more readily!

It's been the year when we have all been unsure about mums health. The previous May, she was told that without treatment she had between 7-12 months left. Of course she decided to challenge that, and now not only has she blown that time frame out of the water by almost doubling it, she has evaded the cancer and is thriving.  She's allowed to drive again,  and doesn't let aything hold her back.  In all honesty, she's doing so amazingly well that most of the time it's easy to forget that she wasn't well! She's our very own superhero ☺

A lot of people have internal battles they need to fight and overcome, and there are a few people close to me who've had to find their strength to do just that in recent months.  I'm not going to name them as it isn't mine to share, but I wanted to acknowledge that their efforts never go unnoticed and I am incredibly proud of them for standing up, owning their shit, and not only realising they need help but taking that help with open arms and the willingness to better their state of mind and their life.  I'm so proud of ya'll, I love you x

My Olive has thrived this year. She is almost 5 now and will start school next April. Despite losing her two best friends to school 6 months before her, she has taken it in her stride and made new friends at kindy. She still doesn't forget about her besties though, and every day when kindy finishes and we wait for school to finish,  she goes to their class to see them. And every day, the teacher invites her in for story time with the class.

She has the most wonderful teachers at kindy, who take the best care of my baby. They take her skin care seriously,  and never fail to reapply her sunblock, and always answer other children's questions about Olive in the factual and no-nonsense manner that both Eddie and I encourage. In fact,  I never even knew about the other kids curiosity until a conversation with Olive that made me realise that she too has adopted the same approach.
We were lying in bed and out of the blue, she said, "Mummy, sometimes kids say 'Olive, what's that brown stuff on your back?' "
"Oh really? What do you say?" I asked her.
"I just tell them it's my birthmark."
"Good answer bub. You don't say it's a nevus though ?" I asked, surprised by her answer because we never call it a birthmark.
"Nah I say birthmark because most people don't know what a nevus is,  but they know what a birthmark is."
My 4 year old told me this. Her perception of recognising an easier way for OTHERS to understand her difference in a way that is relevant to them blows me away. This is not something Eddie or I have taught her, as we have always explained that a nevus is something most people don't have, so she is special, but that inside our hearts we are all the same.  For her to perceive this in the way she does and to relate it in a way that might be more understandable for others, speaks volumes about her own little (or big!) heart.

She is a child who takes free will to the extreme,  and still never fails us to make us laugh with her wit and warped sense of both humour and inquisition. Just the other day she asked if everyone just have heaps of holes on their head. When I laughed and said no, why would you think that, she answered, "for the hairs to come out!" I had to backtrack and say that yes, I suppose they do!

She's been counting down the sleeps until Santa comes (or Father Christmas in her words, even though the rest of us say Santa) and with just one sleep left, I can't wait to see her squishy little face on Christmas morning. The big kids are loving playing along with the magic. Even though they both know the truth,  they are learning that the magic comes from within and they are encouraging this with their baby sister when they help her write letters to Santa, or plant jelly beans to grow and into candy canes.

Amongst the fighting between them all (yes even Olive, tough little thing she is!), they make my heart melt when they take care of each other and work together.

My kids, while resilient, are also very compassionate and understanding.  I have needed this in them the last few months as I myself have not been well. Along with drenching night sweats, unintentional weight loss and extreme fatigue, I've been having excruciating episodes of abdominal pain and vomiting. When these episodes come on, I can do nothing but lie down and wait a few hours until it passes. My kids have been amazing,  helping me when they can and keeping an eye on Olive so I can get through it.

Thankfully, they have ruled out lymphoma after an urgent CT scan, which means because of the inflammation shown on the CT I'm likely looking at inflammatory bowel disease (not to be confused wit irritable bowel syndrome). As if coeliacs wasn't enough, I have to go and add something else to the mix too! But as with everything else we get dealt,  I will face this head on as well. The last few days have actually seen the pain taking a break, so fingers crossed for a great Christmas!

Last year I did a Facebook post about all I am thankful for. This year is no different.

As always, I am thankful for the loving and supportive family I have. Despite all the ups and downs of a large family, we all still band together and are there for each other when we need it.

I am thankful for the happiness and health of my children, in particular my Olive who, 4 years in from her scary birth, has shown us that we don't need to fear the unknown - it is all just a different path.

I am thankful for my beautiful friends who understand that when I'm a crap friend and don't see them for far too long, it just means life is getting in the way and that I still love them to pieces. And the friends who make me do things I can't be assed doing to put a smile on the kids faces. And one particular friend who will grab my kids from school or take them when I'm having a bad pain day.

I am thankful we have a sunny and dry house to live in and that my husband works his butt off to provide that house, and all the necessities of life so I can still be a stay-at-home Mum, and we can give our kids what they need.

Though I still have challenges in the near future, I consider myself very lucky to be blessed with such amazing people who, without them, make my challenges easier to deal with.

I love you all and I wish you all a very merry Christmas with your families and friends.  Xxx

Saturday, 10 September 2016

My inspiration and motivation to write comes to me late at night. Right at the time I should be going off to sleep, so that I'm not tired the next day; right at the time when the sounds and noises of the outside world die down. I guess it's in the midst of that quietness that I can actually collect my thoughts for the day and process them without the burden of pressing everyday tasks and duties that usually dominate my headspace. Often I am too tired to write, so a lot of it just gets jumbled and tossed about in my head and untidily compartmentalised for the time-being. Today, however, I am writing to process and update.

My baby girl is lying next to me snoring softly. I dare not move as I don't want to stir her. She has been so unwell yesterday and today and has finally succumbed to sleep. Her little body is burning up at 40 degrees, she's in nothing but knickers with the sheet draped over her, too hot to have her favourite blankie covering her.
I worry more when she has a fever than I do woth the other kids. Hers always seem higher and take more of her energy. I sometimes wonder if it is because of the lack of sweat glands on her nevus that perhaps makes her heat up even more. I'm not even sure if that's how it works, but she worries me, this little girl. And I am no stranger to fevers - Jaxon has always had fevers in response to virus/illness. He had febrile convulsions as a toddler and was often in hospital/after hours for whatever ailment was responsible for the rise in temperature.

It's all part of childhood, being sick and feeling under the weather. And maybe it's just because Olive is my baby that I worry, but whatever it is, when she is not well, my nurturing instincts go into overdrive and watch for any little extra sign that there is something else going on.

Now that I am actually writing this, I realise this may be the case with a lot of things with her actually. Whether or not it is natural to worry more about her, I don't know. But I do. Like when she had her MRI. I was very nervous beforehand (but hid it from her, of course). More so about the actual procedure than about any potential findings.

As it was, the MRI went fantastically. She was such a good girl and when they administered the anaesthesia, she drifted off to sleep without any trouble. So much so that, despite warnings from friends that we would, neither her or I cried! We got a phonecall from her dermatologist just a few days afterward to tell us that the MRI results were back and that there was no sign of anything untoward. So at this stage we can confidently say that to the best of our knowledge, Olive does not have NCM. We are beyond relieved! It gives such peace of mind to know that we don't have that extra worry.

They did, however, find something unrelated. They found a change in some vertebrae and consequently ordered an x-ray to check for scoliosis. The x-ray went well and Olive was amazing yet again and even walked out of the x-ray room and said, "I'm an expert at x-rays!" (for those who don't know, Daddy Pig from the show Peppa Pig, which is one of Olive's fav's, always says he is an expert at things. He's not.)

Our GP gave us the results of the x-ray, and it shows that she does indeed have scoliosis and at present has a 25 degree curve in her spine. She has 11 ribs on one side and 12 on the other and some other growth patterns which indicate congenital scoliosis. She has now been referred to Orthopaedics for advice on how to monitor this in the future.

A lot of people have scoliosis, I know this. And I know that just because she has a curve does not mean it is going to get worse. But seeing as worry seems the theme of the day, I will admit to being somewhat concerned. I cant help thinking of the worst case scenario - of her having a type of spinal deformity that will again alter the way she looks, and might in fact require surgery at some stage down the road. To think that we made the difficult decision to not choose the surgery option for her CMN, and then that she may require it for something different is something that really plays on my mind. I know in my logical mind that they are totally different scenarios, but in my emotional mind it just makes me sad. My baby has enough to deal with in the future, without adding something else to the mix. It just seems.....unfair.

And then my rational and emotional mind come together and tell me that this is just her path. She doesn't need pity or despair. She needs a strong Mama to guide her way, and to hold her hand through any obstacles she may meet. Just like my other kids. All three of them need us to teach them the ways of the world - the good, the bad, the downright ugly. Or should that be, teach them how to respond to the ways of the world. As the saying goes, "It's not our job to toughen our children up to face a cruel and heartless world. It's our job to raise children who will make the world a little less cruel and heartless."

We're doing pretty good so far, I feel. Right at the moment, Jaxon is lying on the other side of Olive and every now and then he softly strokes her hair or her back. He's been lying with her when I need to do things, and has been getting her anything her little heart desires. Just before he said to me, "I hate seeing her sick, Mum. She's so little and seems so sad when she isn't well." That, right there, is a child with a big heart.

Friday, 24 June 2016

I read over my last post just now and thought my posts are getting further apart these days. Now that Olive is getting older, there doesn't seem to be so much to 'report' on. Each day merges into the next, seemingly without a lot of significant detail, until you realise a few months have passed. But this time I do have a few things to talk about.

Firstly, the best news. Mum had an MRI of her brain recently and the results came back with no evidence of the melanoma! That's 9 months clear since her surgery! Such amazing news. This time last year, we didn't know if mum would be here a year from then. She had been told she had between 7 and 12 months without treatment. For her to not only still be here, but actually enjoying her life and being well, is a blessing we are incredibly thankful for every single day. Obviously everyone is New Zealand will know this (unless you've been living under a rock), but Pharmac has also announced it's funding of an immunotherapy drug called Opdivo for advanced stage melanoma patients. This is fantastic news as until now, New Zealand healthcare has had no funded options for advanced melanoma patients. People have been spending exorbitant amounts of money to try and save their own lives. Thanks to the brave and persistent actions of some very special people, and the rest of New Zealand getting behind them, melanoma patients in NZ now have a glimmer of hope.

On another note, we finally have a date for Olives MRI. We have wanted this done since she was a newborn. For anyone who doesn't know, the MRI is performed to check for melanin deposits on the brain or spine. Of the estimated 1 in 500,000 with a giant nevus, a small percentage of those will have internal deposits. This is called Neurocutaneous Melanocytosis (or NCM for short). In a small percentage again, those deposits can cause symptoms such as seizures or hydrocephalus, and other complications. Olive has never presented with any symptoms of NCM, but Eddie and I want to have all the information possible to provide Olive with the best healthcare.
We have been warned that occasionally an MRI may pick up something totally unrelated and to be aware of that possibility, though this is very rare. Even if Olive does have NCM, nothing will be done about it - it is basically covering all bases and knowing exactly how far her condition exceeds.

I have to admit, I am feeling rather nervous about it. I'd been telling myself it was because of the general anaesthesia having to be administered. None of my kids have ever had a GA. Neither have I. But in the last few days I have processed this differently. Meisha has been referred for a tonsillectomy  and the idea of a GA for her doesn't worry me so much. So i think now perhaps it is more the results I am anxious about. But that aside, I am relieved they are finally doing an MRI. Better the devil you know than the devil you don't - right?

While we wait for her appointment to roll around, we will be starting something new and exciting for Miss Olive. Swimming lessons! She started today and she was super pumped to be having big girl lessons! Through the email exchange for booking, I informed the swim school of her condition and reassured them that it is not contagious, does not hurt her, will not shed into the pool etc. They were extremely accommodating and the instructor was informed beforehand so there is no shock reaction when Olive is in her togs.

The build up to her first lesson far exceeded the reality. I had been quite nervous, simply because it was a new experience for Oli and another group of people to 'explain' her to. Olives togs have a section at the back which is cut out and it sits directly on top of her nevus, this exposing her most 'vulnerable' part of her skin. I did think twice before buying them for her, but there wasn't much of a choice really because they were all designed like that! And really, why should my girl miss out on a pair of super cute togs in favour of a full rash suit just becomes some people may not have manners and not stare?!

So we get to the pool and sit down to wait for her lesson. I take her pants and jumper off from over her togs and see the woman on the other side of the glass partition having a good old gawk at my daughters back and legs. I caught her eye and gave her a big smile.
The swim instructor soon informs us that a swim cap is necessary and next minute we're having a full blown crying fit from Miss Olive herself.  After 5 minutes or so of Olive crying and refusing to even entertain the idea of putting that demon hat anywhere near her angelic little head, I had almost conceded that 'great. What a waste of fkn time and money. We're going to spend a whole term just getting her in the bloody pool.'

I was just about ready to walk out and take her home then I thought nah screw this. And I yanked that dastardly cap on her head and dumped her into the pool with the instructor and left her to it. Thank god she stopped crying straight away - i hate inflicting Olive tantrums on anyone.

Not only did she stop crying, she did exactly what the instructor asked and I was very impressed with her compliance.

When she got out, she told me swimming is fun, and she wont cry next week!

Perhaps I should leave her for other people to sort out more often?

Saturday, 30 April 2016

Watching my children is a favourite thing of mine.

Not in a creepy way. In a Mum way. Watching them deep in concentration, or playing so intently in a world of make believe. Or lost in comfort and thought when they are drifting off to sleep or have just woken up.
When Meisha draws or writes, she concentrates so hard. Her tongue sneaks out and sits on the corner of her lips, somehow aiding in the concentration. Her hair falls softly at the side of her face and she absent-mindedly brushes it away, lost in the world of fantasy coming to life on her paper.

When Jaxon has just woken up in the morning, he comes sleepily out to the lounge and plonks himself on the couch with his teddy. He has slept with that teddy since he was 8 months old, and it is no different now at 10 years old. He clutches his teddy close to his chest. He knows his favourite parts and they each serve a different purpose. He gently rubs teddys ears on his lips, feeling the soft worn fur. He knows which arm is missing some of it's stuffing and he holds that arm differently to the other one. He hold's teddy close to his face so he can smell his familiar smell.

Olive loves to play cars. She will sit for hours, building a city in her mind. She knows exactly where the supermarket is in the game, and the school and the homes. She always adopts an American accent which makes me smile. Her cars have conversations. They have fights. They go to school. They get married. They go to school and get married on the same day. She gets so absorbed in her game, her world she has created, that I can stand at the door watching and she won't notice me. And I do this. It intrigues me what goes through children's minds as they play. She becomes each and every character, and knows instinctively what and who they are and how they are behaving.

Watching my children is a favourite thing of mine.

Olive has a good friend. Her name is "A" and she is an adorable wee girl who can be shy, but when she is comfortable with you, she is hilariously funny. She has an infectious laugh, and her and Olive are always giggling about something together. They get along so well, and they play their little hearts out together.
Last night Olive went for her first sleepover at A's house. This mama was a bit nervous to be honest, which is silly because A's mum has become a really good friend of mine and I know Olive feels comfortable with her so there was nothing to worry about! I guess just because Olive still wakes at night (but she didn't at A's house!) and the fact she's my baby is why I worry. But she had a great night and Meisha went too, so she had her big sister had she gotten homesick.

Lately we have spent a bit of time with A's family and I have really enjoyed watching my kids getting on so great with another family. As I said, watching my children is a favourite thing of mine. I've been watching Olive and A playing. And I see two gorgeous young girls, laughing and being silly with abandon. I see two little blondies, dancing around in princess dresses and high heels, sparkly hand bags slung on their shoulders, baby dolls in prams in front of them. I see two friends, each with a love for the other that happens so easily with young children. I see happiness and fun. I see imaginations running wild and inhibitions running free.

Most of the time, this is what I see. I try hard not to think too far into the future with Olive, but being a Pisces with an imagination that takes over often, this isn't always an easy feat.

The other day I was watching the two girls play, and I smiled as I thought of them soon starting school together. My mind raced ahead to them being the same age as Meisha and her friends now, and just as quickly raced ahead to teenage years and high school. As swiftly as I thought fondly of the bond these girls might be forming now that would take them through school together, I had a sudden thought of Olive herself as a teenager.
I realised that although Eddie and I strive to encourage her self-confidence and to raise her and the other two kids as self-accepting and self-loving, it ultimately isn't up to us.

What if people ARE mean? What if, as with other children with CMN, Olive gets picked on and called names like gorilla or ape? Can you imagine being a young girl/woman and having to deal with that? In my teenage years, I was so self conscious and lost - I didn't know how to process emotions or situations. I didn't know WHO I was, I didn't know what I wanted, what I stood for and what I would not stand for. I didn't know how to be me.

The thought that my girl might be like me, and struggle like I did makes my heart skip. And not in a good way. In an anxiety inducing way. The thought that she might be like that AND have to deal with shit from others struggling in a similar way, and not yet having realised the detrimental effect they might be having on the person they are being nasty to, makes me want to cry.

I fear for all of my kids getting bullied. It is one of those things that makes me feel sick, and to think that maybe one day my child/ren might be on the receiving end actually makes me want to pack them up and home school them. Except I'd lose my shit homeschooling, and wouldn't be any good at it. Plus, I believe there are many valuable social lessons to be learnt from being in a mainstream schooling environment.

So Eddie got home late the other night from band practise. Olive was asleep in the centre of our bed, and Eddie and I lay on either side of her. Just before we turned out the light, I kissed her soft cheeks and stroked her wild hair out of her face. These worries had been playing on my mind all day so I told Eddie about them.

We ended up staying up late into the night, talking about it and about how sometimes we don't know if we have made the right decision to not remove. I think in my heart of hearts I truly feel we have, but part of me wonders if Olive will turn around one day when she is older and ask why we did nothing about it. I know I will be able to tell her that we believed we were doing the right thing, but that still wont determine her reaction or her feeling towards it.

When Oli was born, we pondered the idea of removing big satellite on her left arm (for those who haven't seen it, its about 4-5 cm's in diameter and very hairy). It is very big and is in full sun exposure if Olive is in a short sleeved top. The topic hasn't come up for discussion again until the other night. We discussed the pro's and con's, and our reasons for and against. We really talked it out and still came to the conclusion that no matter how we feel about it, it is still Olive's decision. And at four years old, we don't feel she has the logistical mind yet to make such a decision.

It is still on the cards. It is something I will discuss at our next check up appointment with her dermatologist.  This journey is such a process. You think you have reached a Rest Point, and then something new comes along and opens the way for more discussion. It must always be like this. Changing stages and phases.

In the meantime, I'll keep on watching my children - it's a favourite thing of mine.

Tuesday, 5 April 2016

Some conversations hit you right in the feels. One I had with Olive tonight at bedtime did just that. It was a lot like one I have had previously with her, and I can't help wonder if I am reacting the right way. It went a little something like this:

I kissed the big satellite on her arm and said, "I love kissing your nevus. It's so soft."
She pulled her arm away and said, "it is not. It's spiky!"
Me: "Well I like it, and I think it's soft."
Olive: "I don't like it and I want to take it off. All of them. I don't want to have nevus skin, I want to have just skin."

A little taken aback, I decided to just go with it as I could tell she was getting worked up, so I said, "sweetheart, it is always your choice whether to leave your nevus as it is or to have operations to remove it."

"What's operations?" she asked.

"Well, the doctors would put a bubble in your skin to help the regular skin grow so they can put that there instead of nevus skin. They would cut the nevus skin away and replace it with the new skin and then sew it up. Your nevus would be gone, but you would have scars."

Now, some might disagree with my tactic here of being completely upfront with a 4 year old. But I'll tell you why in that split second I decided to be honest. I have always told my children the truth about life - about sex and how babies are made; about Mum's cancer; about how I feel about things etc - anything they ask me, I have always told the truth. I believe it makes conversations easier, and their trust in me strong. I truly believe knowledge is power and I feel that by arming them with correct knowledge I am encouraging them to make good decisions in their lives.

Olive's decision on whether to go through the removal process or not will always be hers. But I want her to know both ways what might be in store. So that's why I told her the truth about removal, and didn't 'baby' her during our conversation or assume she was too young to understand.

She gasped. "Cut me? I don't want anyone to cut me!"

"Well the doctors would give you medicine so you couldn't feel them do it, it just might be sore afterwards."

She started to cry. "I don't want anybody to cut me Mummy, but I want my nevus to not be there."

She threw her arms around my neck and cuddled into me.

I snuggled my baby back and told her, "Olive, you listen to me. You are beautiful and perfect exactly how you are. Your nevus is beautiful and it makes you special. It is just a part of who you are, and everyone has parts they don't like about themselves."

She had quietened down at this point and she pulled away and looked at me.

I said, "I don't like my toes. And I don't like my double chin. And I used to hide my potato finger."

(I have a funny little finger on my left hand that is almost a centimetre shorter than the one on the right. When I was growing up, I was so self conscious of it, I used to clench my hands all the time in an effort to hide it from view. A few months back, Meisha decided my finger looked like a potato and now calls it my potato finger. Every time the kids or I say it, it cracks me up!)

Olive giggled. I kissed her head and said, "don't you ever forget how beautiful you are my darling. You're just perfect."

She smiled and said, "Ok mama. Love you."

"Love you too bub."

She closed her eyes and I got to thinking. This is the second time now this has happened where she has said she doesn't like her nevus. And both times I have made the assumption that she is tired and in a silly mood. At what point do I stop assuming, and take it on board and really listen to what she is saying? I can't help automatically counteracting what she is saying with positive affirmations about her, but am I actually dismissing her real feelings? Or is it simply a case of a little girl saying something for a reaction? I feel she is far too little right now to make a decision such as this. And I want her to be totally secure in her decision as well.

My thoughts flickered to what might have instigated her comments. Maybe someone at kindy had said something?

"Is anyone mean about your nevus Olive?"

Her: "No mummy, they all love it. They think it's cool."

I smiled. "Because it is! It's part of what makes you special!"

She smiled as her eyes closed again and quietly said, "I love my nevus Mummy. Love you. Sweet dreams mama."

And off to sleep she went, with the knowledge that her Mummy thinks she is perfect exactly as she is.

Saturday, 2 April 2016

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.

Monday, 29 February 2016

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!

Friday, 29 January 2016

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."

Sunday, 10 January 2016

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!