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.
Olive is our beautiful daughter who was born with a Giant Congenital Melanocytic Nevus.
Saturday, 19 December 2015
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!
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.
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.
...
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
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!
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
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
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'.
;)
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'.
;)
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