The girl with the curl(s)

Every morning, when I tell Meisha to brush her hair, she resists. She tries to tell me she's done it (even though the birds nest at the back says otherwise), or she says she will do it in the car and conveniently forgets. If I try to do it myself, she cries and says it hurts. And she has straight hair that is actually easy to brush!

Olive, on the other hand, has longer, curlier hair that come morning, resembles someone from the caveman era. Yet she always lets me brush it when need be and never moans, no matter how many knots I have to drag the brush through.

Olive has had a few trims but never a full haircut. In fact, we've had to trim a few spots various times as they grow much longer than the rest.  I've spoken before about the hair being a characteristic of CMN and this doesnt appear to discriminate on any of Olive's spots! She was born with 4 sizeable satellites on her scalp and its amazing how different the hair on those spots is compared to the rest of her hair.  It is quite coarse and wire-y. It is darker than the rest of her blonde locks and when her hair is out, it falls wildly because of the different directions of the hair growth. The different tones give her hair that women pay a lot of money for!

As I said, she never moans when brushing time comes, which often surprises me as I would have thought it might be more sensitive due to ger spots. Her back is much more sensitive than her 'normal' skin, and understandably so - she has no subcutaneous fat layer so her skin is much thinner.  We've noticed things affecting her more regularly these days - if your nail scratches a little as you pick her up, or when she hid under her bed the other night and scraped her back getting out again. Thankfully she has only had 2 or 3 small tears, or scrapes that actually bled and even then it wasn't a lot at all.

She's pretty tough, this little girl. At just 3 years old and with such petite stature, she will try anything physically challenging, no matter how high, no matter how hard. She can hold her own against her big brother and sister and in fact it is often them who come crying that she has hurt them!  I know I shouldn't, but it's hard not to giggle to myself that my tiny mite has the strength to make big kids cry!

We've been cutting down on our sugar consumption recently and while I haven't noticed any behavioural improvements, I am glad she no longer wakes up asking for biscuits at 6.30am (and no, I most certainly never gave in but the tantrums that ensued were enough to set up a day pf frustration and short tempers!).

She has just been shifted into a shared room with Jaxon as Meisha was upset that she'd never had a turn at having her own room. Olive thinks this is fantastic because she gets the bottom bunk.  Jaxon loves to take care of his little sister so is happy with the arrangement, despite his room now being overrun by Peppa pig and baby doll accessories. Olive thinks she is quite the big girl being allowed to share with her big brother!

But even Big Girl's need their Mum sometimes. So I still lie with her every night to get her to sleep. We always have a little chat, generally about our day but sometimes she chimes in with something random and often as equally revolting - "Mum, we shouldn't eat poo aye?". But every night, after our chat, is always the same. I pretend to yawn, she catches it and yawns herself.
"I'm tired Mummy", she says, and turns over.
"Me too bub".
"Me too Mum. Hug me". And I do. And every night I smile to myself. My tiny terror with the attitude to give any teenager a run for their money, drives me bonkers most days. But I look at her beautiful peaceful sleeping face, with hair splayed all over the pillow, and hear her soft slowed breathing and I smile because I am the luckiest Mum in the world. I was blessed with the best children, and I am so proud to be their Mum.

Following the advice we give our kids...

While knowledge is in fact, power, sometimes it feels just the opposite. Knowing with certainty that somebody you love's time is coming, is an inescapable thought. We all know that everyone dies. In our heads we know this, but in our hearts no-body ever thinks it will happen to them. We all wish for our Mum and Dad to live forever. We wish for our Nana to still be sitting in her corner chair in the sun, giving us crude and outdated advice on life, when we ourselves are old. Nobody ever imagines losing a child, yet a large portion of people are thrust into the exclusive club that nobody wants to be a part of.
We all know that death is a part of life. But nobody wants to face it.

I have learnt a lot about my Mum in the last few years. In particular, I have learnt a lot more about her beliefs and I respect her for explaining them to me, even though us kids can be right arseholes sometimes and poo-poo things that we don't necessarily agree with. But Mum has opened herself up to us, and told us more about what makes her calm, what feels right for her, what she believes, and how she wants things done. I respect that. I think it is amazing that Mum is finding the beauty in the inevitable and I praise her strength and determination to have things go as she believes is the natural path.

The shock factor feels as though it's worn off after receiving the news, but I have to admit I feel like I'm riding a sort of neutral plateau. I feel as though I am just waiting...waiting for something ridiculously exciting, or something ridiculously heart-breaking. It's as though there's no middle ground for emotions, just the extremes. The kids are a wonderful distraction of course, with crazy day-to-day life with my three bundles of madness.

On Thursday Jaxon and I attended the funeral of a dear friend of ours, an elderly lady who lived next door to us at our old place. As we sat there listening to the loving words of her special family, I suddenly had the thought that we may have to do this one day soon. We might have to be the ones in the front row seats, taking turns at saying how incredible and precious our Mum was. Trying to hold it together and failing, the heart break written all over our grief-stricken faces. All I could think was that I can't, I can't do that...how the f*ck am I supposed to do that? How can we do that? I can't do that!
I actually had to remember the advice I had given my own kids when we told them about Mum - that it is incredibly sad and that we would feel extremely upset, but that it is part of life, it is natural and that everyone dies.

We may have to do that soon....not just with Mum, but with anyone I love. Anything could happen at anytime, we never know when someone's time has come. Everyone dies, and people do get through it.

I just don't want to have to....

***

Last weekend my sister and I sat and had a few rum and cokes together while her fiancé and Eddie partied with my brothers and my Dad. We talked about a lot of things, obviously one being Mum, and about losing people, and somehow the conversation turned to Olive. She asked me a question that I've only been asked by her and my Dad.
She asked, "Are you afraid of losing Olive?"

For those who don't know, people with CMN have an increased risk of developing melanoma and occasionally complications from NCM (Neurocutaneous Melanocytosis - deposits or lesions on the brain or spine. We have no idea if Olive has it as she has never had an MRI).

I told her the truth, that majority of the time I wasn't any more afraid of losing Oli than I am Jaxon or Meisha. That I buried that fear somewhere deep inside very early, because I knew I couldn't live every day in fear that there was something wrong with my child. That fear still surfaces at times, and it is mainly when we get the devastating news that another child with CMN has passed away. I admit that each time this happens, that niggly little feeling of "Are we doing this right?" turns into a real confronting question in my mind. Are we doing everything we can for Olive? Are we doing enough? Are we worrying enough? Are we worrying too much? Are we doing it the right way? Should we have an MRI? Am I vigilant enough with sunscreen? Are we right in choosing not to remove? Do I insist on enough from the doctors? Do I teach her enough? Do I teach her too much?

Parents doubt themselves all the time anyway. We all know we don't get a handbook with babies, and we sure as heck don't get one for kids with differences!

It's not often anymore that I have the deep conversations with people about the emotional side of having Olive. Most of the time it is about the medical side. As I said earlier, I can only ever remember my Dad and my sister asking that same question. I am open to all questions and will always answer as honestly and as raw as I can. I suppose because I don't often think about that side of things with Olive, when we talked about it, a floodgate of feelings were opened and it brought it to the forefront of my mind for a few days.

I think it is good to be aware. It is good to have knowledge. Knowledge is power. But sometimes, we need to play a bit oblivious to knowledge as well.