Light!

Ever since I heard the name Chiara, I absolutely loved it.. and even more so when I discovered that it was the Italian word for ‘light’..

I think if there was one word to describe Chiara, it would definitely be light… this girl has such a spark about her that its palpable. She literally lights up a room, she seems to spread so much light and love to everyone she meets – and I always get the hunch she knows so much more…

As her muma, I feel so connected to her and when she suffers..I feel it.. after all we are all connected through the universe, as well as housing the universe within, which is probably a foreign concept to most in the West, yet most Eastern traditions know this to be fact. Check out this beautiful 4 minute film here… to get an idea of how intimately connected each and every one of us really are…

A great example of this is found in the word ‘Namaste’ – used throughout India as a way to greet one another, often with the hands in prayer. One of my wonderful Yoga teachers Leigh Blashki shared this beautiful translation of Namaste… 

I honour that place in you, where the entire universe resides. The place of peace and truth and of love and light; When you are in that place in you, and I am in that place in me, we are one. Namaste

And here’s another cute version of the same message of our oneness, written in a children’s book.. one of my fav’s that I read to Grace We are One

It’s been a big few weeks, celebrating the arrival of beautiful family from Germany which has been special… as well as fighting off chest and ear infections with G, C and I.. this winter has brought with it some strong strains of lurgy’s… so the usual therapy routine has been limited for little C.

We have started Baclofan medication for Chiara.. to help dampen down her extensor pattern and high tone that moves through her body like lightening.. and inhibits her to do many of the things we all take for granted.
Chiara’s Cerebral Palsy, effects all 4 limbs, so from a medical perspective, this medication with help to relax her body so she is not limited by her rigidity, sounds wonderful in theory, yet it comes with some risks, one of them being seizures. We have been told she already has 80% chance of having a seizures.. we just have no idea when or if they will strike..but the neuro, genetic and developmental team all tell us the benefits far weigh out the risks.. it’s tough making the call on such things..

So in the coming weeks, we will notice that Chiara will be a lot more floppy than usual, and she will have to work hard to re-gain the strength through her neck and body and hopefully if all goes to plan, she will have access to a lot more fine motor skills to help her whole body move freely….

We also had speech therapist visit, to help with pre-verbal communication. We have been so consumed with Chiara’s mobility (or lack there of), that we often forget that her brain injury also comes with the diagnosis of the possibility of a life without words/speech.. I wonder if or when she will utter her first word, I am certain that she will have a voice of an angel… if it is able to express in this lifetime or not… only time will tell..

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