Momentary Hibernation

So I went undercover for a while after the initial diagnosis.. mostly because I spent as much time (in between looking after the girls) researching as much information as I could… I felt a deep sense of urgency, to get Chiara onto a top-shelf nutritional plan, as well as a kick-ass synergistic therapy plan. Problem is, her condition was so rare so it was so difficult wading through the crazy amounts of information – to try and work out what she needed.

I felt overwhelmed, not only for the fact she may not walk, or talk or function like the rest of us, I was actually terrified of losing her. Many medico’s had told me she had significant reduction in life expectancy.. and that there was nothing I could do. I shed loads of tears. There wide range to her diagnosis was overwhelming at times, individually they seemed manageable… cognitive development, or physical development, but then to throw into the mix short life expectancy…

It took a while to process this new role of mum.. to carer of a disabled child, I still cringe a little with the label. Im blessed Chiara is so happy, her spirit shines and sometimes she looks so deep into my eyes with a knowing wise stare.. and I smile back in acknowledgement that she is here to teach me so much more…

Ah bless music, and its uncanny way that it writes out the verse to many stages of our lives. These two songs, Shine Bright Like A Diamond, and I Will Fix You – played around in my mind…

Chiara has Bilateral perisylvian polymicrogyria.. you need a PHD to get your head around all the scientific terms on this… The most likely cause was a stroke that she may of had when I was pregnant…

In the most widespread form, bilateral generalized polymicrogyria, severe intellectual disability, cerebral palsy, and refractory epilepsy is present in Polymicrogyria.

Image.

 

 

Categories: Healing

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