The transition from 2015 into 2016…

(the font size keeps changing on me on this post, no idea how to set it all to one size…!!)

The transition from 2015 into 2016…
 
How was our 2015? amazing, frightening and extraordinary. This year was cruel as much as it was kind. We excelled in some areas and completely failed in others. We laughed until our bellies hurt and cried until we fell to our knee’s. 
 
We kept moving forward and brazenly carved out our own paths and continued to trust our intuition. We held reverence for the incredible new people we met who offered us their help no matter how big or small. We stumbled blindly though many new moments of this fragile medical journey and handed over our deepest worries to the divine. We worked hard day and night providing the additional care that Chiara needs, whilst trying to create a space where Grace could continue to thrive. We continued to show up, day after day even when we were so exhausted and there wasn’t a hint of a milestone change. This year continued to crack open our hearts so we could expand our love to the furthest edges of the world and remind ourselves of the very foundation in which we will live by?
 
‘Limitation or Liberation?’
 
For any parent caring for a medically fragile child this is one of the biggest questions you will ever be faced with. Don’t wait for the answer, simply live it. Live through the limitations so that you can carve out your own individual liberation. 
 
So here were were, our little tribe together watching the last sunset of 2015 at the beach.The beach was full of families and festivities, champagne bottles popping, music and lots of laughter. How good is the beach, you get to squeeze the most out of the day until the very last ray of sun. I cannot wait to move closer to the bay and our family this year.
 
I love water.
 
I’ve grown up with water, snow and sunshine. Dad teaching me as early as a few moths old to swim in Nana’s pool, then years spent at Lake Eildon on our family House Boat, to holidays around Australia’s coastline. To bodies of water overseas, to dipping into the Holy Ganga, to a tranquil lake in an Indian Ashram, to the incredible Greek Islands, to living on a yacht in Turkey, to swimming at night with glowing phosporous, to floating on my back dazing at the star-lit sky, to scuba diving day and night. Water encompasses some of my most treasured memories and standing in the sea holding and supporting Chiara’s entire body on the last day of the year reminded me of that. 
 
Although like so many things these days, it’s laced with a touch of sadness for the simple fact that Chiara cannot access all of these things. I try and move Chiara’s limbs for her through the water, so she too can experience the freedom and ease of moving freely through water.  As her arms and legs flowed down alongside her body, with no muscle activation, I felt the pinch.
 
I closed my eyes and like so many times like these, I pray. 
 
I don’t know what else to do in these moments, I have cried, I have grieved, but now, more than ever – I simply pray. I pray by the Grace of God for guidance, healing, miracles and faith. We watch on as her body moves from extension, to relaxation, back to intense hyper-extension. The cerebral palsy making her body go as stiff as a board, her limbs forced into positions that clearly make her uncomfortable. Not being able to manage normal seating, like a high-chair as her body can’t balance in it, nor relax in it. Not being able to enjoy lying on her belly or back as the tone kicks in and she cried in pain, not being able to manage any sort of physical positions for long periods without extreme discomfort.
All this makes the moments of physical relaxation very limited each and every single day. Then to see her have to work so hard in therapy sessions, hundreds of therapy sessions… what a fighting spirit these children have.

 
In four months time Chiara will turn three.
 
Our number one focus for this year is mobility and ease though her body. We are dedicating this year to multiple Movement Therapy Intensives.
 
And although we feel the pinch in some areas, like freedom of movement, we also praise the areas that we have seen change.
 
– Chiara’s myoclonic reactions (similar to seizures) have completely minimised, so now she can manage short car-trips and plane-trips. This has been a massive change for her, her brain has managed to regulate and normalise these areas for her which is incredible. The myoclonic responses used to be incredibly debilitating and terrifying for her.
– Chiara’s sound sensitivity is more balanced, so she doesn’t burst into tears when a dog barks, or we sneeze, or laugh suddenly or use kitchen appliances etc
– Chiara is slowly learning to feed herself with a spoon, this is a work in progress
– Chiara is able to let us know (in her own funny way) when she needs to go the the toilet so we see the cues and respond to them by putting her on the toilet.
– Chiara is communicating more and more with eye contact, feel’s amazing when we get clear communication tips.
– Chiara to us seems so vital and healthy in terms of her overall health and wellbeing, in comparison the severity of her brain injury.
– Chiara continues to show us she is so eager to learn, her intention is so clear. 
– Chiara loves to draw, paint and create
– Chiara loves reading and YES she turns the pages!!
– Chiara contines to engage in the world around her
– Chiara belly-laughs more and more and loves her big sister Grace
– Chiara continues to shine in adversity….
 
…. and for us that is the kind of liberation we need to focus on.
 
May you be blessed with health, happiness and a fierce spirit to help you thrive through 2016.
 
With love,
us 4 x
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Categories: Cerebral Palsy

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