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.