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.

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.
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

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