Tuesday, 10 October 2017

I'm one of those people who make a decision,  having thought it through, and think I've made the right one.  I convince myself I have. And then once the decision is firmly made, and I think I'm at peace with it, another perspective crashes it's way in and makes me see another side that I didn't see before. And all of a sudden I've done a complete 180 and am seeing things completely different. So I'm reneging.

My last post was supposed to be just that - the last post. But over the last few months since I finished, I've realised how much I need to write. It's a coping mechanism. As I said in that very post, without this blog I wouldn't be where I am today. And so I thought, maybe I can still write.
I still feel that it is Olive's story to tell from now - she's 5 now, she's much more independent, it's her life, her journey....but golly gosh, she's still so little - maybe it's still partly mine too? Right now, her life is my life (actually I don't think that ever changes with your children!) and I WANT to write about her, about the big kids, about our family. So, bugger it, I'm gonna!

This year has been tough for our family. Mainly because of me, which makes me feel extreme guilt even though it's beyond my control.  In an earlier post in the year I mentioned pain episodes I was having. It got to the point where it was daily and I would spend most of the day in bed, only just making it out to drop off the kids or pick them up. I barely ate,  I lost almost 10 kgs and I was fatigued beyond description. Finally, after a multitude of invasive tests and procedures, I was diagnosed with crohns disease. Crohns disease is one of the more common inflammatory bowel diseases. It is an autoimmune disease thst causes inflammation and ulceration in your digestive tract - anywhere from mouth to the other end. Mine is 8-10cm affected in the terminal ileum - the narrowest part of the small intestine, at the end where it meets the large intestine.
Crohns patients suffer from a huge range of symptoms - pain, diarrhea,  fatigue,  weight loss - as well as many extraintestinal  (outside of the affected area) symptoms. It affects your bones, your muscles, your mental health, just to mention a few.
There is no cure. Patients go through periods of flares and remission and the aim is basically to get them into remission and improve their quality of life.
At the moment I am on immunosuppressants and a mild anti inflammatory specifically for the gut. I've been classed as in remission for the last 2-3 months but still suffer from daily discomfort and pain. A recent test just this week showed I still have a moderate level of inflammation and the pain episodes have been coming back. It is trial and error finding what medication suits what patient because each person reacts very differently. And each medication comes with its own set of risks and side effects.

I'm not telling you all this to feel sorry for me. For the most part, I think I cope ok. I do what needs to be done and try to get the rest my body is telling me it needs.  But that all comes with guilt, because my kids are so young. They shouldn't have to deal with a mother who is unwell. They shouldn't have to be stuck at home all holidays because I've put a rib out (another story, but seems to be related to the crohns). They shouldn't have to worry. Sometimes I get emails or texts from Jaxon or Meisha while they're at school, asking if I'm ok today. While it makes me smile that they're thinking of their dear old mum, it makes me sad that they have to.
In all of this though,  I feel lucky. I feel lucky that I got to have my kids before I developed this awful disease. Some people are so unwell with it they still have to rely on their own parents at my age. Some people can't have kids because of the meds they're on to control the disease. Some people can't hold down a job (I'm one of them - this year was meant to be the year I go back to work and we get ahead. Right now, that's impossible!)
I feel lucky to have such incredible children who's compassion and sympathy for others astounds me all the time.
I feel lucky that I have such an amazing support network who will do anything I need them to, to help make my life more manageable. Friends and family who understand that I can't do all I want to and sometimes I don't realise this until just before whatever plans we've made are meant to occur.

My kids are so resilient though. They should be getting to go to the movies and having friends over all the time.  They should be going to the park and shows and camping. If it wasn't for my 'village' they'd have done nothing at all these holidays.
As it is, my superhero mum and sister have taken them out at different times and had them for the night. A new friend from school, the mum of one of Olives classmates,  offered to take Olive for a day out with a bunch of other kids from her class. Olive had a blast and I'm so grateful to people like this beautiful soul who 'get it' and open their arms to extend my village.
I hope one day I will be able to return the favour.

On the subject of Olive and school, she is smashing it. She comes home each day with a new reading book that she seems to be flying through, and she practises her writing anywhere and everywhere. On the weekend the big kids decided they wanted to share a room so Olive has her own room for the first time. I found this note on the floor outside her room. She does a few letters backwards and is still learning about spelling but it says: No one can come in Olives room except daddy and mummy.
It was the first thing she did once everything was moved over!
I have so many notes and letters the kids have written stored away for them to laugh at when they're older - this one will be added to that pile!

Olive has also made some friends at school, most of them being boys. She seems to gravitate more towards boys as friends at this stage and is always telling stories about the funny games they play.
One of the boys told her she was little. She got most upset about it and told me she sat under the table and "no one even came to see if I was ok mama!" She told me.
I have to giggle at this - she IS small. She's one of the shortest in her class. She developed a bit of a complex about it for a while and though it's hard when your child is unhappy with a part of themselves for whatever reason, it makes me smile that this is what is causing her grief. We all expected her to have issues with people saying things about her nevus,  but that barely even gets a second mention these days!
She tells me nobody at school ever says anything,  and that it doesn't bother her. We still talk about it but just don't draw a lot of attention to it. She doesn't like shaving it anymore (she doesn't like the sound of the clippers and she says she loves her soft hair!), so for now we don't.  She did get me to cut the hair on her large arm satellite one day with scissors though - that was time consuming!
Unfortunately whether she likes it or not, we need to shave the satellites in summer to get good sunscreen coverage. But we'll cross that bridge when it comes to it.

She's growing up too fast. She's 5 and a half now (those halves really count when you're a kid!) and she's always making cries of life being unfair - when Jaxon and Meisha are allowed to stay up later, or when I won't let her watch Barbie YouTube videos all day. She's a bit of a princess in our house and even though she's getting older, she's still very much the baby. Every night around midnight I get a tap on my shoulder and a whispered, "mummy? Mama?" just before she climbs in my bed, blankie in tow, and snuggles her soft little body into mine. You can't see no when they're that sweet. Even if they're 5-and-a-half.


Sunday, 2 April 2017

Goodbye's are not always forever....

This decade seems to be the age of technology. Every year newer, better and more advanced capabilities are discovered within the realm of communication and contact. We have phones and computers that are capable of performing what were long considered 'human tasks'. We are spoilt for choice on what we can read and pay attention to, with online news sites a plenty and social media presenting us with information as events unfold.

Those of us who have seen both sides of the technology growth will often reminisce about the 'good old days' when if you wanted to see someone you turned up at their house or called them on the corded phone.  The days when you discovered the news only at 6 o'clock or in the morning newspaper. Sports results weren't put out there as a spoiler a minute after the game and conversations were had with friends and neighbour's,  not people you'd never met through a screen.

I often mention these things myself when I read about the next new phone or computer,  or see spoilers of my favourite show posted online where you can't avoid it.

But truthfully, being Me in today's world has been a huge benefit for me. Without the internet and the support of hundreds of people I don't know (and hundreds that I do!), the last five years would have been extremely different.

I'd not have had the information I needed to access and I'd not have 'met' (I use quotation marks because a lot of the nevus family I have not met in person) and my life would not be as enriched and enlightened in the way it has been.

We never would have made it to Australia, been in news and magazine articles.  We wouldn't have the platforms to help raise awareness of CMN and to cobtributrto research.

I'd not have had this blog as my outlet to process my emotions about Raising Different. There's a grief process involved when your child isn't as you expected, and for some people this can be incredibly difficult to overcome.  Not so many years ago, a child born looking different to the norm would have been hidden away so as not to cast shame on the family. This still happens in parts of the world today. I personally can't imagine being any prouder of my daughter, but I was fortunate to live in a society that is growing evermore accepting and open about these kinds of things. I am lucky that my 'village' backs me 100%. And I am lucky to live in the digital era where I've been able to bring my emotions to fruition by expressing them through this blog, and actually having people read it and give me their perspective. I can never thank you all enough for the gift you have given me in your support.

Five years on and I still gaze at my darling girl and marvel at the gift she is. Five years on and I can't believe we are here already. We're at the next phase, the different turn in the path,  where we have to let go of the reins a little and send Olive off into the brand new world of school.

For our family, the baby days are over.  Gone are the times of breastfeeding and night feeds; nappies and mashed veges; bouncinettes and pushchairs; first words and first steps; baby giggles and baby tantrums.  We have school aged children now - all of them! It is incredulous to me how time slips by in the blink of an eye. We made it through, relatively unscathed,  not a broken bone amongst them, and they are all damn good kids.

It is the eve of Olive's 5th  birthday and while she softly snores in her bed, dreaming of birthday gifts and wishes,  Jaxon and Meisha have baked special birthday cookies for her to have on her very first school lunch.
It is these moments that make me smile inside and know that Eddie and I have great kids. We were blessed with three wonderful little humans, who have taught me the biggest lessons in my life. I wouldn't change them for the world.

I said in my last post that Olive's birthday one would be my last one. So that milestone has arrived and it is time for me to end this here, and to send each and every one of you my most heartfelt thanks for the last five years.

Ending the blog doesn't mean our journey is finished.  Quite the opposite!  In a way it is now just starting, but now it's Olive in the driver's seat. We'll be here for her every step of the way, cheering her on, wiping her tears and encouraging her to be the best person she can be. The one she is.

But from here on in,  it's her tale to tell and I'd like to encourage you all to keep on reaching out to those who need their stories told. Keep on loving unconditionally. Keep on standing tall with your friends and your children. Keep on teaching your kids that kindness is the right way, that just because someone might look or behave different doesn't mean it's a negative thing.  Keep on doing the amazing job you are all doing in making the world a more positive place.

Love to you all,

From Kizzie xx





Friday, 17 February 2017

The End of An Era

My very first blog post was written when Olive was three months old. It is charged with the emotions that were so overwhelming and all too consuming of that major time in all of our lives. We had gotten our heads around the situation a bit, but we still had so many unknowns. In all honesty, the Kizzie who wrote that first post expected so much more difficulty than has actually ever risen.

I thought I'd have more to write about. I expected to find things with Olive harder than I'd ever imagined. I anticipated writing about a lot more medical aspects.

But truth be told, the last four and a bit years have been much easier than those expectations I had in my head. The largest reason for this is because of who Olive is. Nothing to do with her nevus, but her as a person. She showed us from day dot that she was a feisty little girl with a zest for life and a crazy sense of humour to boot. She made it easy for us to enjoy her as our last baby without her difference dominating her. She's never let it hold her back, and I don't imagine she ever will.

I don't like to blow my own trumpet, but I also believe that it has been easier because of our acceptance as well. We accepted very early on that Olive looked different to most people, and we decided to be open and honest. I remember when she was first born and Eddie didn't want me putting any photos up of her back. He did not want her exploited in any way, and I totally understood his stance. After many of our late night chats and crying sessions, we ended up agreeing to post a photo to remove the 'unknown'. To eliminate any assumptions perhaps made and to stop any shock reactions for Olive herself from people who knew her. It was the best decision we made.

Every one of my friends and family has been so supportive and encouraging - cheering Oli on from the sidelines and doing the same with us as her parents. You've all been so fantastic when I ask for advice, giving me constructive criticism in how to deal with some of the situations that have arisen and putting a different spin on things for me to think about if I am doubting myself/us. YOU have all made this easier for us as well. My 'village' has kept me going.

It's just under two months now until my baby turns five and heads out into a whole new world again. The idea of Olive starting school is just a bit scary, I'm not gonna lie! It's another world of people to get to know and accept her again, and another world for her to find her place in. She's already been edging her way in there, saying hello to teachers and students when we wait for Meisha, and making friends at kindy who will then go on to be in her class at school.

But there's still a whole bunch of new kids who don't know her, and who haven't seen a nevus. So we intend to lead the way as we have always done with our Oli and be upfront and open straight away. We will talk to her new teacher and discuss the best strategy for removing any 'mystery' around her nevus - whether that be chatting with the kids and telling them or just waiting for the questioning situation to arise, I'm not sure yet. But we got this. Olive's got this. She's a bolshy and straight up kinda gal, and I have every confidence that she has what it takes to deal with what may come up.

Five years old is still pretty small, mind you. I look at her a lot and think, 'nooo, you're too little to start school!' She's still my squishy, my little sidekick, my baby. But these are my insecurities and nothing to do with her as a person. She is well ready for school. She's smart, clever, funny, friendly. She's learning to write and count. She loves to be independent. I know she will thrive even more once she is there.

And yet, this is the end of an era for our family. I will no longer have pre-schoolers. Soon I'll be the Mum of three school-aged children. No more kindy, ever. No more Fridays at home with me. No more Plunket checks. No more 'under 5's free'! Haha! No more stay-at-home Mum really - who am I home for?!

This is also going to mark the end of my blog. I've decided I will do one more post when she turns five and then I'm packing it in. I want to give her the privacy she deserves now she is getting older and is now more aware of the world around her and is learning to be her own advocate. Oh I know, I will be her advocate and biggest supporter until the end of days, but I think as a blossoming young girl she deserves to not have mum hash out her challenges on social media anymore. This is the beginning of her taking on the world herself, and if she wants to write about it when she is older, then she can.

Otherwise, she will always have this to reflect on her First Five Years of us getting to know our amazing, beautiful, quirky,  hilarious, quick-witted, clever Olive Marie.





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.