Sunday, 30 August 2015

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Saturday, 15 August 2015

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Tuesday, 11 August 2015

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

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

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

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

It shows you what matters.

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

Tuesday, 4 August 2015

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

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

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

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

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

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

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

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

J A Neale
06 - 0185 - 0323585-00

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

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