Saturday, 19 December 2015

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.

Tuesday, 1 December 2015

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!

Thursday, 8 October 2015

"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

Sunday, 20 September 2015

As I said to my older sister the other night, let's not do the last week again. Ever.
I am so exhausted, and none of it actually happened to me. I was just watching from the sidelines, cheering everyone on and consoling them when they came out of the game. But as it turns out, this week our family won the game. We survived it and are smiling, even if most of us want to go home and sleep for the next two weeks.

My sister is recovering well from her op, and my mum is like a superwoman. She was allowed to go home just three days after her brain surgery. This time around it hit her harder though and she went through the wringer a bit on Saturday, the day after surgery. As it turns out, the tumour had grown quite rapidly so a bigger incision was needed to remove it. It had also hemorraged prior to surgery - no wonder she had felt so crappy and in such intense pain!

Going to see her the night of her surgery was an eye opener. In HDU, surrounded by patients who were completely out of it, some groaning in pain, some obviously unable to move their own bodies, there was mum. Eating falafels and cracking up at her own jokes. She really is superwoman. But she's under no illusion of her powers either.

I often see posts in regards to melanoma and people being clear for a certain number of years. I hate to be the pessimist but mum was clear too once. For five years after stage 3 melanoma on her ankle she was clear. When it grew back in her lymph nodes and she had those removed, she was clear for 4 years following. Then it was the worst of the worst. It hit her brain.

Now mum views it as a disease to be managed, not cured. And sadly, I agree. Cancer does not discriminate. I have seen too many children in the past 3 and a half years since Olive was born dying of melanoma directly related to their CMN.

Because people with CMN have an increased risk and so do people with a family history of melanoma, that scares me. The chances of my daughter developing melanoma, though still slight, is still a very real fear.

She came to me yesterday and showed me a bump on her nevus. I'm fairly certain it is a bite of sorts, but instances like this this still open up that vault of fear that, for the most part, I have locked away until there is reason to open it. Things like this start the key turning slightly.

So I will watch it this week and if it doesn't heal we will be off to her doctor to get it checked.

She's changing, our girl. She is still crazy and outgoing but she's getting more self conscious. Don't get me wrong, she is still keen to run around naked at home and doesn't care if part of her nevus is showing (it actually doesn't even register at her age!), but she is less willing to show people if they or we ask. And fair enough too! Can't say I'd want to show off my body parts if someone asked me to! The difference is though, that I am 31. She's 3. I've had a lot more experience and exposure to 'society's norm'. I'm well aware my body is far from perfect, yet I try to embrace the changes as the reality of carrying and nurturing babies. In a perfect world, little girls shouldn't be self conscious. They shouldn't have to feel shy or embarrassed of what they are born with - things they have no control over. Yet they do. My 8 year old, Meisha, has very defined muscles in her upper back. She is strong and can do a lot with her strength that other girls her age can't. She can do stuff women my age can't!
Yet when I said to her, 'bub can you show Aunty Chels your strong back?' (I was very impressed and I knew my sister being a personal trainer would be too!), she went all shy and coy and said no. I never push my kids with things like that. It's their body and they control who gets to view it!

Unfortunately for Olive, with her annual dermatology appointments she will have yup expose her entire body for someone she barely knows. As she gets older and less willing, I realised how important it is to make these experiences positive ones. Olive can be very shy around men in particular and as her current derm is male, I have requested she be changed to a female. The doctor I have requested we be changed to is a brilliant dermatologist with many years experience in CMN - some even in Great Ormond Street hospital where a lot of research in regards to CMN takes place.
That's not to say our current derm is any less. Not at all, but in my world my kids come first which is why I requested the change - so that Oli is as comfortable as she can be, given the mild invasive ness of the nature of her visits.

So fingers crossed we hear back soon as to whether this can be done.

In the meantime, we are celebrating having my husband home from his holiday in Tahiti and tomorrow is the start of a new job for him. Exciting new beginnings!

Thursday, 10 September 2015

There's a lot to be said for family. I was blessed with a huge one. And not all of them are blood related. Many I have known since the day I was born and many more I have met along the way. I love them all so much, and couldn't imagine a life without knowing them. Most I don't see nearly enough but when push comes to shove, they are there. Waiting. With arms open wide and hearts full of love.

Tomorrow is D Day for Ma. Her second surgery to remove the tumour. She was admitted today and is first on the surgical list tomorrow for 8am brain surgery. Another giant step in Mums courageous fight against this god-awful disease threatening to take her life. She's so brave. She wasn't nervous today when we went to say our 'see you when you wake up' goodbyes. I am though. Surgery is scary. Especially when it's your mum!

We were thrown a curveball though when my older sister was admitted to hospital with suspected appendicitis. Today has been a waiting game, with her in tremendous pain, waiting to be called in to surgery. She has just finally come out and it is now 10pm and I am sitting in the hospital waiting room. Normally bustling with activity, it is now dead quiet and an eerily good place to reflect on a shitter of a day.

Today has been psychologically exhausting, but it's shown me how lucky we are to have such an amazing network.
My sister has two beautiful children, the oldest of which stood up and took care of his 16 year old self and 12 year old sister all night while their mum was in hospital.
Our lifelong friend, who happened to be going for a cuppa with my sister and instead ended up spending the entire night in a hospital with her, sleeping on a settee.
The kids nana who went to their house at 7am this morning and got them ready and off to school.
My dad who went straight up to the hospital so she wasn't alone then drove back to get my niece from school and spent the day and night with her.
My brothers for taking mum out for lunch before she had to be admitted. One brother, for sitting with mum for hours until my stepdad got there. My other brother for taking food, because being vegetarian and gluten free sucks! For having me to chill at his place while our sister was in surgery, even though he wanted to go to bed.
My little sister for offering to take my shift at the hospital despite feeling under the weather herself. My husband for doing the nighttime routine so I could be with my sister, even though he is supposed to be packing for a once-in-a-lifetime holiday to Tahiti tomorrow.
To all the people texting us and messaging me, keeping our family in your thoughts.
To my best friend for making me a mixed CD years ago that resurfaced tonight and provided me with the good tunes of Snoop, Goldginger, Cat Stevens, Dre and Westside Connection while I drove and waited.

Imagine not having all these people to put their hands up and step up without being asked, and doing it without complaint. My world is full of love and I appreciate it every single day, today even more so.

I started writing this post as I waited in the hospital. I am now home, in my pj's, cuppa tea in hand. My beautiful little family are obliviously snoring their heads off while I reflect on how fortunate we really are.

We have love. We may not all have our health right now, but we have love. And no matter what happens, that love is strong enough to carry us through.

Sweet dreams my family - all of you.

See you when you wake up after surgery Mum. I love you xo

Sunday, 30 August 2015

It's a funny old day today. It's Sunday here, which is a day of relaxing, getting things sorted for the week, making sure the kids get to bed early and have things in order for school tomorrow. All this is still happening of course, but it was also meant to be the day Mum was admitted to hospital to prepare for her second surgery tomorrow to remove the tumour from her brain. It hasn't quite been a year since she last did this.

Unfortunately the hospital had two emergencies come in overnight so they have had to postpone Mums surgery, with no date set as of yet.
We had planned to go and visit with Mum this morning and give her a cuddle before she set off for this round of treatment, so we decided to go for a visit anyway.

The conversation turned to parenting, and memories we have of when we were young.

Last year when we first found out about the tumour, Dad and my brother were in Europe. They were there until after the surgery and this was really hard for them both, and for us.

I don't often write about my dad, not because I have nothing to write but simply because my blog is mainly about Olive, but with the turmoil of emotions involved with Mum's journey, it compels me to write to process said emotions.

It goes without saying that my Dad is the best. He is hilarious, always manages to make you laugh, whether intentional or not. When we were kids, he used to pretend to walk into walls and crash into the floor, leaving us hysterical fits of giggles.  He still does the same for the grandies! Being a very talented artist, he has an eye for detail and this extends to a lot of areas of life - when he cooks, he takes sooo long to do so that we all hassle him about finally getting dinner before midnight. But secretly I love that about him. He pours his heart and soul into a dish and makes the most simple foods amazing - his salads are always delicious and his chips are the best in the world.

When we were little, we would climb into bed and find a nice warm hottie heating the bed up. Dad would come and tuck us in, and when we would moan about being cold, he would rub the blankets to create warmth. Even now I refuse to fill hotties and make Eddie do it because it's a 'dads job'!

No parent does things the right way all of the time, and both my parents can admit this, but giving praise where praise is due, my parents did their best. They taught us how to love - our family is full of love. With four siblings, we've sure had our ups and downs, but when all is said and done, there will never be a day we can't lean on each other. Dad has been a prime example in our lives of what a father should be to his children. I have never in my life felt I couldn't talk to my Dad about something. Even if it may be a somewhat awkward topic, he never casts judgement and accepts each of us five children exactly as and who we are.

My Mum and Dad split after 19 years of marriage and 5 children. I remember the day they told us kids they were separating and it was such a shock because we never heard them fight!
They were friends, and even now after knowing each other for 40 odd years, they still are. I can only imagine how difficult it is for him to watch his ex-wife, his friend, the mother of his children, going through what Mum is now. And the icing on the cake, is he has to see his children and grandchildren travel this too. All while dealing with his own thoughts and emotions. Yet he is ALWAYS there when we need him. No matter how exhausted he may be, he always has time for us. He is what a father should be.

It's funny the things you remember. I can't remember a lot from before they separated even though I was about 10 years old. I think I may have inadvertently blocked it out because it hurt to think about. Mum and Dad always did their best to put us kids first. Even though sometimes they disagreed, they never actually fell out with each other (at least not in a way that us kids knew about) and I thank them both for never putting us kids through the awkward and painful experiences that a lot of kids from broken families go through.

Dad spoiled us kids when we went to stay with him at weekends, and Friday night was always takeaway night. We would get Burger King and hang out at his place playing Prince of Persia on his little Mac computer. He was in a band around that time, and would often take my younger sister and I to band practice. It was so loud, but we thought it was so cool so we would just put up with it! I never got the musician gene, so if I am honest, the music just sounded like a big loud racket to me!

I remember one time, when the band went to the snow to film the video for one of their tracks and us kids got to go. It was so much fun - they hired dodgems for a day and when they weren't filming, we got to race around in them.

Often on the weekends we would go and visit my grandparents. We would sometimes get to stay for dinner and end up going home late. I used to love sitting on Dad's knee, with my head on his chest, listening to him talk and laugh with everyone - his voice would boom into my ear and was so comforting.

I went through a rough time as a teen, struggling with depression and lack of self-confidence. Dad was always there to lend an ear, though I found it hard to talk about things at that age. But he always ALWAYS told us girls we were beautiful, clever, kind, compassionate - he'd always remind us of our good bits.

He is very articulate with how he writes, but sometimes he'd muck words up or change them. For instance, I had a friend called Sarah who he always called Sara and even now he still says 'hokey pokey' instead of 'okie dokie'!

Dad has been a constant pillar of strength for me in my parenting journey, as has Mum. The kids love going to Pop's - he spoils them with his incredible homemade chips (seriously the best ever!), little treats he buys for them, and letting them do things they aren't allowed to at home. He is firm with them (they would never dream of disrespecting Pop because they know he would be so disappointed) but showers them with love.

When Olive was born, Dad was watching Jaxon and Meisha and he had the difficult duty of telling them that there was something different about their new sister. I remember when Olive was little and we really struggled to fix the wounds in her little bottom and her back (the nappies would rub on her nevus and make it bleed, and the meconium was too harsh for her delicate skin and tore it, leaving a raw and open wound). Dad would come over daily with new things to try. He bought her beautiful soft towels and a lovely soft sheepskin for her bed so she was comfortable. He took the older kids whenever we needed him to and always thoroughly enjoyed his time with them - he still does this!

Even though his day's of Saturday sport duty with his own kids were well over, he used to wake up early on a Saturday to come to Jaxon's soccer games, cheering him along and praising him after the match.

He always takes the time to do quality things with the kids. When he comes for his Sunday visit, I often find him in the bedroom reading stories with Olive, or listening to Jax tell him about the latest thing he's into, or praising Meisha on her latest art project. He is always so encouraging with my children and I love watching him with them. It warms my heart.

My parents have been such wonderful and loving examples of how to raise children. I wouldn't change them for the world. If I can be half the parent my Mum and Dad are, I will be very proud indeed x

Saturday, 15 August 2015

"Mummy, I don't like my nevus. I want you to take it off and my special spots too."

My eyes flicked open. As per every night, I was lying with Olive to get her to sleep. I thought she was almost there, and then she hit me with this one.

I paused for a moment, and then simply asked, "why?".

"I don't like it mummy! I don't wanna have a Nevus! I don't love it now!"

My heart skipped a beat as I pondered how best to respond to this unexpected statement. Thoughts racing through my head, I figured at first that someone had said something. As my mind went a million miles trying to establish the root of this outburst, I verbally tried to placate her.

"Darling, your nevus is just part of you. And you are a wonderful person. You are clever, you are kind, you are lovely to kiss, you are funny...."

I trailed off as she kept saying, "No I don't like it mummy! I want you to take it away!"

Just as quickly as she interrupted me, I interrupted her. When at first my instinct was to shield her and quickly guide her back to love for self, my mummy brain told me something different. I knew she was tired, and I knew that sometimes when my kids are tired, they are irrational. So rather than try to argue with her (an overtired 3 year old little girl) about why she should love herself and how much I love her, I just went with it.

"Ok babe. Tomorrow we will take the Nevus and package it up for another little girl."

She stopped whinging and gasped. "No way mummy! I need it! It's MY Nevus! I can't give it to babies!"

And I smiled to myself, told her, "ok, good night sweetheart", kissed her forehead and she turned over and went to sleep.

It's funny how little exchanges like this can affect you when you have a child with a difference. Because in reality, she is 3. She likes being silly. She likes saying things to get a reaction. She likes to wind her brother and sister up. She likes to say 'no' a lot. She likes to be defiant and stubborn.

Just last week during bedtime chats, she told me she wants her hair cut off because it goes everywhere. And I dismissed it and told her to go to sleep! Why should the latest exchange be any different, just because she said nevus instead of hair?
It shouldn't be. And right now, at such a young age I simply refuse to let body image be an issue for my daughter.

Meisha is 7 and last year she suddenly decided she hated her arms because they were hairy. I talked with her and questioned where it had originated. She was adamant nobody had said anything, she just decided she had hairy arms and she didn't like it. For weeks she would only wear long sleeves. She would hide her arms and get all shy if her sleeves rode up. Eddie and I decided to just ignore it. We were hurt that our young daughter could possibly hate any part of herself - to us she is the picture of perfection, just as Jaxon and Olive are.

Apart from one instance with my sister where we both showed Meisha our arms and pointed out that we all have hair on our arms, and that she should be proud of her arms as they were strong and helped her climb, we didn't bring it up again. And she got over it. She wears all types of tops and shirts again and hasn't said another word about it. And now she shows off her strong guns to anyone who asks!

So I think my mothers instinct told me to follow suit when Olive said she didn't like her Nevus. It may not be the right way and I am well aware that one day we may have to face body image issues with our girls, but for now I want them to enjoy life.

We tell all our kids often what we love about them and how proud we are of them. And I really am. They all have big hearts, a solid foundation of good morals, clever brains, strong bodies, and individual strengths which never fail to burst my heart with pride.

Oh, and they're all goddamn beautifully good lookin'.


Tuesday, 11 August 2015

I have given this a lot of thought, and I have decided not to accept the offer from Caring Matters Now to attend the education weekend in March.
I would like to thank those who have donated so far and assure you that the funds donated will be used toward establishing Nevus New Zealand when the time arises.

There are a number of reasons for my decision, but the main one is because of where we are at with Mum. It is a never-ending roller coaster of emotions, and once you are on the ride, it is impossible to get off. Each day presents new decisions, new emotions, new experiences. To be brutally honest, I just cannot bear the thought of being away from my family at this stage - and who knows where we will be in 7 months. It is not a decision I can commit to in this time, and feel it is better to stand up and own that, rather than put energy, time and money into something that may not actually eventuate.

As Eddie said, there will be other conferences, but this time with Mum - with my family - is precious and I don't want to miss a second of it.

It is hard not to come across as pessimistic about the outcome when talking about the near future in our family. But I don't think of it as that, I am trying to be realistic. Trying to prepare myself for when D-Day comes. I don't imagine you can ever fully prepare yourself for losing a loved one, but I see it as a blessing in a way that we DO know Mum doesn't have as long as we all hoped. It is a blessing because we get to do things we wanted to, say things we wanted to - not just with my Ma, but with everyone we love.
It teaches you the value of each day and making each day count. It makes you count your blessings for what they are. It makes you see the good in people. It shows you real, raw love.

It shows you what matters.

So thank you, all of you, for your wonderful support and generous donations. For the next short while Nevus New Zealand is on the backburner. It will happen when it's meant to, but right now isn't that time. x

Tuesday, 4 August 2015

Our world may be topsy turvey but we still have to get on with it.

I have had an amazing opportunity presented to me. I have been invited to attend the Caring Matters Now International Support Group Weekend in London in March 2016. All accommodation, meals and a sight seeing experience will be paid for.

During the weekend we will have the opportunity to:
  • visit Great Ormond Street Hospital and the Institute of Child Health, where the CMN research takes place
  • listen to Dr Kinsler’s research presentation and have time to ask her questions about the CMN research
  • receive training on developing patient group support structures
  • receive training on how to give one-to-one support through listening skills
  • attend the Caring Matters Now London Support Day and meet our families
  • See the sights of London
  • Enjoy social time with support group leaders from around the world.
As you can all imagine, this is a wonderful opportunity for me and a fantastic kick start for Nevus New Zealand. 

I am allowed to take one other person with me, though we will need to cover their costs.

So I am aiming to fundraise as much as we can to help with this venture. It is all in the name of Nevus New Zealand and will benefit the structuring and progression of our organisation immensely.

Every cent raised through our givealittle page will be going directly to help Nevus New Zealand. We are still trying to raise ongoing funds to help with the overheads, pamphlet run etc as stated on the page.  You can do so here: Support Nevus New Zealand

You can also donate here if you would like contribute to this London opportunity.

Alternatively, you can donate directly to the current bank account used for Nevus New Zealand funds.

J A Neale
06 - 0185 - 0323585-00

All contributions are incredibly gratefully received. 
Thank you, thank you, thank you!

Note - unfortunately our donations are not yet tax deductible as we are not registered.

Thursday, 30 July 2015

There's a term that cancer battlers use for the anxiety that comes with waiting for scan results.  Scanxiety.
I'm not even the one with cancer but I can relate to this term wholeheartedly.
Mum had a CT scan 2 weeks ago to see if the melanoma had spread to the rest of her body,  an MRI on her brain to track any growth there.  She then had a wonderful week long holiday in the snow with her good friends and her husband.

So the results were lingering on all of our minds the whole time. Actually,  I say lingering but if I am honest,  it is more like taking over.  It is extremely difficult to distract yourself when you are well aware that someone out there is one step closer to knowing the fate of the person who gave you life.
You get on with the things you need to but find you forget a lot,  you muck up a lot,  your sleep is disrupted, your tolerance and patience is a lot shorter than usual.

The waiting has to be one of the worst parts about this whole journey with Mum and I'm sure others in a similar position would agree.

I can't even imagine how Mum feels.  She's so strong.  She's so realistic.  She is encouraging towards us and overall she is patient. She trusts that things will happen how and when they are supposed to. I feel sorry for her sometimes that she still feels the everlong need to protect her children from hurt and raw emotion.
She tries her darn best but unfortunately nothing can stop our pain when facing the prospect that we may lose our mum sooner than we bargained for.

The good news is,  the cancer has not spread anywhere else in her body. The tumour in her lung has no grown.

The bad news is, the brain tumour has increased in size. It is now around 3cm.

Because the cancer is not in the rest of her body,  they are offering surgery again to buy her more time.  She is going to continue her GCMaf treatment at home (GCMaf is a protein that healthy people produce naturally.  Cancer patients do not produce it and the treatment is a series of daily injections into her head of the GCMaf protein. It is very difficult to break through the blood/brain barrier with any treatment, but GCMaf has a wonderful success rate of curing cancer in other parts of the body), as well as exploring other options.

We are fairly certain that Mum will opt for surgery again.

It's one thing to be accepting that this is Mum's path in life,  this is her journey,  just as we all travel our own.  But it's another entirely to actually watch her go through it. And that's what it is - watching her. We are all here for her and always will be,  but ultimately SHE is the one who is walking the beaten track.

We love you,  Mum. Every single one of us. I thank my lucky stars for you every day,  and I wish with all I have that you didn't have to endure this endless waiting game. Xo

Thursday, 16 July 2015

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!


"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.

Thursday, 11 June 2015

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.

Friday, 5 June 2015

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 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.

Tuesday, 26 May 2015

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.

Tuesday, 19 May 2015

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.

Saturday, 18 April 2015

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.

Sunday, 15 March 2015

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....

Saturday, 31 January 2015

Time of Our Lives

And just like that, our trip to Adelaide is over and done! My, how fast it flew! We arrived in Adelaide last Thursday and after meeting up with my Aunty Karen and Uncle Dave, we checked in to the holiday park where the conference was held.

Here was a bunch of people I had come to be friends with over Facebook but had never met in person. I knew all of their faces and names but didn't really know them.
I was feeling rather anxious and shy at the prospect of meeting new people. I wasn't sure what I was supposed to say, or do, so I really had to push myself at first.

As it turned out, I never had to push myself at all. The instant friendships which formed and will no doubt carry on through our lifetimes are immeasurable. The first day, the most common phrase heard was, 'Hi, I'm ***, do you have a nevus?'.
Where else can people with CMN and their parents so openly ask such a question, with the knowledge that everyone else there will understand what they are talking about? It is so hard to explain what this conference was to us. It was so much more than we ever could have imagined.

Olive made friends straight away, with a wee girl called Ellie. Within 5 minutes of meeting, they were lifting their shirts and comparing their nevus. They rolled around the grass together, giggling and carrying on.

She was also doted on (as you can imagine!) by everyone else, in particular Danielle - Michelle's (NeSA Director) 13 year old daughter. Michelle's kids are just awesome. They are such a beautiful family, so close and supportive not only to one another, but also to every one of us who attended the conference.

Jaxon and Meisha also made instant friends - Jaxon with a dear boy called Coen, who has a scalp nevus, and Meisha with Ellie and also with the older girls, all of whom have a nevus. All weekend, the kids would be off in the pool, or in the games room. They played on the huge jumping pillow or would wander around the park. They had the time of their lives, and it was fantastic to see them all get along so well. The older girls often took the younger girls with them to do whatever they were doing, or they would all play together in the pool or on the splash pad.

This freed us parents up to socialise and attend seminars/presentations. It was the start of a new way of communication for nevus groups, with having live presentations via the internet with well respected surgeons, researchers and doctors. We learnt a LOT in these presentations, though I am not going to share it on here as some of the new developments are not yet for Facebook publication and I'd hate to put my foot in it somewhere!

We shared birth stories, and I suppose it isn't surprising that a lot were very similar. A lot of us had our babies taken away for a length of time as the doctors were stumped. A lot of us had endless streams of doctors and health professionals coming to 'view' these tiny and helpless wonder's of the medical world. When discussing our experiences, there was no need to explain how situations felt, or why each chose to take the path we did, because we all UNDERSTAND. It is beyond words how comforting these conversations can be!

On the Saturday, we had 12 hours of non-stop presentations. This was pretty full on and we all missed one or another, due to needing some rest. After this full on day, despite being absolutely shattered, we put the kids to bed and had a few drinks with some of the others and reflected on the day. It was really cool to be able to do this, as some of the people had travelled from as far as America and Malaysia.
I had the absolute pleasure of meeting Mark Beckwith and his lovely daughter Megan. Mark is the Executive Director of the US organisation, Nevus Outreach. Mark gave a great presentation on the Power of a Parent.

Sunday, we all took the coach to Gorge Wildlife Park, where we got to hold koalas and feed kangaroos. The kids really enjoyed the park and we all loved spending time with the other families.

As we left the park, Jaxon's new friend, Coen, came up to me and gave me an Australia keyring - "so you don't forget Australia". I almost cried! All of the kids were such kind hearted kids. They were all so helpful and caring and they all really nurtured one another in different ways.

The youngest nevus owner there was Jaxon, a gorgeous wee 4 month old boy with a bathing trunk nevus. He was the sweetest little thing and seeing his satellites on his head and wee legs really took me back to when Olive was a baby (a little too much perhaps, I kept sniffing the poor kid! haha). The eldest was Rita, who is 69 and travelled on her first overseas trip all the way from Florida. I absolutely adore Rita. I loved sitting with her and listening to her telling me about her life. As you can imagine, things were much different when she was young compared to the facilities and care etc that our kids have now. I am so happy that I got to meet Rita, and I definitely hope to see her again one day!

I could go through and tell you what I love about each and every person that was at the conference, but we'd be here for days! Let's just say that all of the people I met, I am so glad to have met them.
As a mum, it is hard to put into words how grateful I am to introduce my girl to others with the same condition as her, at such a young stage in her life. It takes away the 'rare' or 'different' factor for her somewhat, because it means she won't go through years of her life thinking she is the only one. Even if she doesn't remember this trip, we intend to carry on these friendships, and so Olive will always know of other children who have similar skin to her. She won't feel so alone.
This is one of my biggest wishes as her parent - for her to never feel alone. And we have started the ball rolling, both with attending the NeSA conference, and reaching out to others in New Zealand.

I don't want other nevus parents to go through what we had to go through. To have no answers and have to muddle through with little to no information.
I want there to be somewhere for new parents to be directed, for support and information. To have someone say to them, 'it's OK. Your baby will be OK'.
I want doctor's to have a pamphlet that they can give to patients, so they can ring or visit our website or visit us.
I want to hold conferences, so that CMN patients and their family can be kept up to date with new research.
I want others to experience what we did, right here, in New Zealand.

And I'm going to do it.

There is just one thing holding me back. The thing that holds most people back from pursuing their dreams - lack of funds.

We need sponsors. We need individuals or companies to support us financially so that we can get this how on the road. My first goal is to raise $1000 to cover the legal fee's involved in us registering, and to cover the cost of our first pamphlet design and print.

If anyone can help, please email me here or donate here (there is a simple reason for setting up a givealittle site. We cannot open a bank account until we are registered, but once we are, we will be able to take donations via other means).

Thank you, from the bottom of my and my family's hearts, to everyone who donated and gave us this opportunity of a lifetime. It was so so much more than I ever imagined, and I will forever be grateful to you all.


Thursday, 22 January 2015

Today is the day!

It's like Christmas in our house today. I have three very excited children, and us two almost as excited adults (albeit a tad stressed! ) who are going to board their first international flight in a few hours.

Today is Adelaide day!

Its 4am here in New Zealand and I have woken myself earlier than said children to have a coffee before madness descends upon our household.

2014 was a huge year for my family,  the biggest thing being mum's brain tumour. The excitement of Adelaide got buried when our worry and sadness of mum's situation took over.
Yet here we are, getting up at ridiculously early hours, getting ready to fly to our first Nevus Support Australia conference.  WITH mum.
My mum is a fighter. She has kicked this evil disease like a cancer fighting ninja. She is truly an inspiration. A woman so invested in treating her body with the care and attention it deserves. A successful and strong woman,  a wonderful role model for my children.

I am so proud to call her my mum, and best friend.

For weeks, Olive has been asking anyone and everyone if they too are coming to Adelaide.  Of course,  everyone says no, it's our special trip - but it has been a great opener to talk about how only some people have a Nevus.  I have explained to her that most people dont have one, that just her and a few other people were blessed to have special skin. So sge is super excited to meet her 'nevus friends' in Adelaide,  most of all the dear wee baby boy Jaxon ("just like our Jaxy aye mum!") who also has cmn.

I've been asked a lot about what part I am most looking forward to, and though I am really interested in the presentations and information,  I have to admit that i am really looking forward to socialising with this extended family we have adopted.  To be among others who understand my fears and triumphs that come with raising our little girl.

And I finally feel ready to arm myself with all I need and come home and throw myself into Nevus NZ, so we can provide similar support to those in New Zealand.

On that note, I'd better throw myself in the shower so I dont miss that plane!

I can never thank you all enough for giving us this opportunity.  Without everyones unfailing support and encouragement, we truly wouldn't be doing this.

Thank you all, from the bottom of my heart x

Friday, 2 January 2015

There is such a build up to Christmas, it can be such a time of stress for many families. Expectations from people, commitments to fulfil, events to attend, money to fork out - you name it, it happens over the Christmas holiday season.
This year, we also had to move houses. So we did it three days before Christmas. A crazy decision in hindsight, but with the enormous help of my family and a good friend, we did it! We got in on the Monday and were all unpacked by the Tuesday. Kids got a tad neglected and left to their own devices (which generally consists of ipods, computers and ruining Mum's make up), but it wasn't long and we were all settled in. We are still getting used to the different house and surroundings, but overall we are happy with a new beginning. And the kids can stay at the same school, which is a biggie for us.

For Christmas, we brought India to Mum since she couldn't go on her trip in the end. It was great! Lots of beautiful Indian outfits, delicious food, and memories with my amazing family.

So with all of that craziness out of the way, we can now focus on the trip to Adelaide. Three short weeks and we will be flying out. I actually can't wait. There are so many people I will have the opportunity to meet on this trip, and so much information I can drain from them! Not to mention, the kids and I have never been overseas so that is exciting in itself!

Olive is super excited but still doesn't really understand time concept so often asks, 'we going to Adelaide today Mama?'. I have told her about the wee baby, Jaxon, who has a nevus like hers and she can't wait to see him. I think she just likes the idea of not being the baby for once as well!

As you know, we shave the big satellites on her arms and legs to allow for easier sunblock application. The other day she grabbed Eddie's nose trimmer (what we use to shave as it is quiet and not scary for her) and came out and asked me to shave her nevus while Pop was here. She sat very quietly and attentively while showing Pop how it's done.

Later that evening, she was running around nudey after her bath and ended up lying on my bed stroking her thigh.
'Dad!' she called.
'We shave my back?'

I couldn't help giggling at the demanding request of a little girl to her Daddy.

We talked to her about it and told her we weren't going to as it might become really itchy when it rubs on her clothes, especially with how hot it has been here lately and how hot it will be in Adelaide.

She understood, and was happy to leave it for now.

But isn't it funny, how you might think of yourself assessing situations like whether to let your girl shave her legs, etc perhaps at pre-teen or teen age, but for our nevus babies we are contemplating whether to let them do these apparently socially acceptable acts before they even start school? And it's not even a big deal, it just is.

Let's make 2015 a great year. For happiness, prosperity and health. For research and cures and growth.

Let's make it count.