Tuesday, 29 October 2013

Same, same

New Zealand's population is 4.433 million.

Giant Congenital Melanocytic Nevus affects 1 in 500,000.

According to those figures, there should be just a handful of people in our country living with this condition.
So what are the chances then, of meeting another person, with a CMN in the same location as Olive (a bathing trunk nevus), before she is 2 years old?

Personally, I think it's pretty damn awesome and incredible.

On Saturday, Olive and I got to meet a new friend. Her name is Haley, she is 19 and she has a nevus like Olive. And she only lives in Hamilton (For those who aren't familiar with NZ, that is only about a 2 hour drive from where we are in Auckland).

I think the meeting had much more significance for Haley and I, considering Olive is barely even aware that she HAS a back, let alone that the skin there is different to everyone else! She was content with rifling through Haley's wallet the entire time, and emptying what she could. She did try a few times to get me to pocket Haley's phone but I wasn't willing to be an accomplice.

This was also Haley's first time meeting another person with CMN, and I can only imagine how odd/cool/emotional that may have been for her. We discussed lots of different things, and both agreed that it is wise to hold off on the New Zealand Nevus charity. There isn't a lot of interest and momentum just yet in NZ for an association or foundation of its sort, so we figured we would wait a bit longer and see what happens. For now, we will piggyback on Nevus Support Australia, and Eddie and I still hope to attend the 2015 conference, though we are not sure yet how achievable that is.

 Through our chats, I learnt a lot about her journey and what her parents had been through when she was a baby and young child. She has overcome some huge hurdles in her life, and is an amazing person. Full of positivity and has a real 'Get On With It' attitude. I hope for her to become a good friend, and would love for her to be around for Olive to see someone else who KNOWS what it's like to be a little different, but is beautiful and happy and enjoying life.

Unfortunately, we both totally forgot to get a photo of them together! We will have to do it next time. For now, I want to thank Nevus Outreach and Nevus Support Australia for connecting Haley and I so we were both able to meet. Eddie and I never imagined we would meet another person as special as our wee girl so quickly after her birth.

I think the most touching part came just before Haley left. Olive often lifts our shirts and tickles our tummy's saying 'tittle, tittle!'. She sat next to Haley, and lifted her shirt. Just as she went to tickle her, she noticed her skin and went 'oh!'. Haley lifted Olive's shirt as well and said, 'look - same, same'.

Olive looked at both, grinned and said, 'same, same!'

Thursday, 24 October 2013

Parenting young children can often feel mundane and a heck of a lot like Groundhog Day. Along the way, there are lots of rewards - when your newborn smiles, or giggles, when your toddler walks or cuddles into you; when your kid gets an excellent report and you beam with pride. The rewards are actually neverending, they are all of their own definition but ultimately it comes down to pride. Tonight I had a conversation with my Dad and told him a story. He said one of the most rewarding things as a parent, is when your child grows into an adult and supports you - in an emotional sense.

Today, my 6 year old did that for me.

At school pick up today, a good friend of my middle baby, Meisha, was playing with Olive. The girls all love Olive and cuddle her when ever they can. Today Oli had shorts on, and this little girl announced, 'she has a hairy spot on her leg!'. It took me absolutely by surprise. I forget that other people aren't used to it....and this was just a satellite! While my brain jumped through what to say, my dear beautiful Meisha replied with such busting pride, 'yeah! That's her nevus. She has lots. She has a biiiiig one on her back. And more on her arms. And those on her legs. They're her special spots!'. The little girl looked a bit stumped for a moment and then smiled, and carried on playing with Olive.

It is hard to explain to somebody who hasn't lived this, but I will try. Though we are absolutely at peace with Olive's nevus and we are used to it, there are still times when I am hyper aware of it, and of people looking and what they may be thinking. Like when I have to remove her top in the mall carpark because she tipped water all down it. Or when she does that rigid plank thing toddlers do when you try to pick them up and her top rides right up.
I realised tonight that on these occasions I get a little flustered and tend to work a bit quicker, perhaps to avoid people staring. I shouldn't be doing this, I know, but I suppose I am still not used to having to answer questions so I brace myself and almost expect someone to say something....nobody ever has. It is a complete over-protection act on my part, and today Meisha showed me how I need to react to people questioning the differences our baby has.

My kids drive me nuts. Absolutely bonkers! But I couldn't be more proud of them. All 3 of them are incredible little people and if I might say so myself, I think Eddie and I are doing a pretty bloody OK job.