My inspiration and motivation to write comes to me late at night. Right at the time I should be going off to sleep, so that I'm not tired the next day; right at the time when the sounds and noises of the outside world die down. I guess it's in the midst of that quietness that I can actually collect my thoughts for the day and process them without the burden of pressing everyday tasks and duties that usually dominate my headspace. Often I am too tired to write, so a lot of it just gets jumbled and tossed about in my head and untidily compartmentalised for the time-being. Today, however, I am writing to process and update.
My baby girl is lying next to me snoring softly. I dare not move as I don't want to stir her. She has been so unwell yesterday and today and has finally succumbed to sleep. Her little body is burning up at 40 degrees, she's in nothing but knickers with the sheet draped over her, too hot to have her favourite blankie covering her.
I worry more when she has a fever than I do woth the other kids. Hers always seem higher and take more of her energy. I sometimes wonder if it is because of the lack of sweat glands on her nevus that perhaps makes her heat up even more. I'm not even sure if that's how it works, but she worries me, this little girl. And I am no stranger to fevers - Jaxon has always had fevers in response to virus/illness. He had febrile convulsions as a toddler and was often in hospital/after hours for whatever ailment was responsible for the rise in temperature.
It's all part of childhood, being sick and feeling under the weather. And maybe it's just because Olive is my baby that I worry, but whatever it is, when she is not well, my nurturing instincts go into overdrive and watch for any little extra sign that there is something else going on.
Now that I am actually writing this, I realise this may be the case with a lot of things with her actually. Whether or not it is natural to worry more about her, I don't know. But I do. Like when she had her MRI. I was very nervous beforehand (but hid it from her, of course). More so about the actual procedure than about any potential findings.
As it was, the MRI went fantastically. She was such a good girl and when they administered the anaesthesia, she drifted off to sleep without any trouble. So much so that, despite warnings from friends that we would, neither her or I cried! We got a phonecall from her dermatologist just a few days afterward to tell us that the MRI results were back and that there was no sign of anything untoward. So at this stage we can confidently say that to the best of our knowledge, Olive does not have NCM. We are beyond relieved! It gives such peace of mind to know that we don't have that extra worry.
They did, however, find something unrelated. They found a change in some vertebrae and consequently ordered an x-ray to check for scoliosis. The x-ray went well and Olive was amazing yet again and even walked out of the x-ray room and said, "I'm an expert at x-rays!" (for those who don't know, Daddy Pig from the show Peppa Pig, which is one of Olive's fav's, always says he is an expert at things. He's not.)
Our GP gave us the results of the x-ray, and it shows that she does indeed have scoliosis and at present has a 25 degree curve in her spine. She has 11 ribs on one side and 12 on the other and some other growth patterns which indicate congenital scoliosis. She has now been referred to Orthopaedics for advice on how to monitor this in the future.
A lot of people have scoliosis, I know this. And I know that just because she has a curve does not mean it is going to get worse. But seeing as worry seems the theme of the day, I will admit to being somewhat concerned. I cant help thinking of the worst case scenario - of her having a type of spinal deformity that will again alter the way she looks, and might in fact require surgery at some stage down the road. To think that we made the difficult decision to not choose the surgery option for her CMN, and then that she may require it for something different is something that really plays on my mind. I know in my logical mind that they are totally different scenarios, but in my emotional mind it just makes me sad. My baby has enough to deal with in the future, without adding something else to the mix. It just seems.....unfair.
And then my rational and emotional mind come together and tell me that this is just her path. She doesn't need pity or despair. She needs a strong Mama to guide her way, and to hold her hand through any obstacles she may meet. Just like my other kids. All three of them need us to teach them the ways of the world - the good, the bad, the downright ugly. Or should that be, teach them how to respond to the ways of the world. As the saying goes, "It's not our job to toughen our children up to face a cruel and heartless world. It's our job to raise children who will make the world a little less cruel and heartless."
We're doing pretty good so far, I feel. Right at the moment, Jaxon is lying on the other side of Olive and every now and then he softly strokes her hair or her back. He's been lying with her when I need to do things, and has been getting her anything her little heart desires. Just before he said to me, "I hate seeing her sick, Mum. She's so little and seems so sad when she isn't well." That, right there, is a child with a big heart.