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Labels & Light

Kiara has recently noticed that she is unable to raise her left eyebrow. She tries to look surprised, but looks skeptical instead, and we get the giggles. Add that to the fact that she can only open her mouth two finger-widths wide, with her bottom jaw going completely off center when she does it, and she has us in hysterics with her ‘surprise!’ face that makes her look like a wonky pirate.

“Are you calling me a brain-damaged pirate?” she asks with her one eyebrow raised in mock disdain.


We fall over laughing - it is so absurd to hear the word ‘brain-damaged’ as a label when we have come to know it as an incident and an injury. Labels seem so insignificant in defining identity; simply signs of a life hard-lived. ‘Survivor’; ‘Fighter’; ‘Champion’ - these seem like the only appropriate labels to those who have been damaged and yet remain to tell the tale.


It’s heartwarming to see Kiara with the confidence to make fun of herself, and to see her sense of humour, too. It amazes me that it has taken this long for her to realise that her eyebrow doesn’t work, but I know the reason it has. In this time of damage and recovery, she has not allowed the mirror to teach her who she is. She barely glanced in it when her head was grossly deformed due to the absence of one half of her skull. The first time she looked carefully at herself in the mirror without her bandage on was the very day she would have her surgery to replace the skull piece. Instead of the mirror, she has looked into the faces of those who love her, and defined herself by what she sees in our eyes.



Today she finds a swimming costume on the Woolworths half-price sale. I am surprised as she comes out of the changing cubicle proudly wearing a two-piece costume. The white plaster stretched across her abdomen covering a wound from her belly button to her side shows up boldly against the black of the bikini. She smiles eagerly into my eyes and asks, “What do you think?”


I um and ah - I was not planning on buying her a costume at the end of summer, and in a family of seven children every price tag needs to be multiplied by seven to be fair. But I admit that she looks absolutely beautiful - her sweet little bandaged waist is complemented by hips that are just beginning to full out.


“Don’t worry, I have my own money,” she reassures me, closing the deal. She seems totally unfazed by the idea of exposing the scar that will be wrapped around her waist next summer.


I tilt my head and look at her, with her back to the mirror and her eyes on my face, and I can only smile and nod my approval. “You look beautiful.”


She is damaged and she is perfect, perhaps not as seen through the cold cruelty of glass that reflects light but not life, but certainly as she is seen through eyes of love.


And I realise that lifeless light was never supposed to be allowed to define any of us. The true Light of the World that exposes us is also the Love of the World that covers us and the Life that creates us with his breath.


I smile sadly at the foolishness of us who have been deceived for so long, and proudly at a pure-hearted little girl who has found a better way.


May we learn from your wisdom, my darling, letting no light or label define us, except that which is given by our Creator.


We are praying for you as you pray for us.

For Kiara we are still trusting:


1. For her skull bone to grow together miraculously.

2. For her skin to seal perfectly, and for the last (4?) remaining knots of the sutures to melt away without needing to be cut out.

3. For the severed nerves to grow back to control her left eyebrow.

4. We are going to take her to physio for her jaw. We pray for the muscles to recover and for the alignment to be corrected.

5. For wisdom in how much to let her brain rest, and how hard to push her into improving her concentration and being able to accomplish academic tasks.


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As I was praying for Kiara having just read this blog, I had a picture of of an instruction manual that comes with a new appliance. I thought of how each one of us is "wired" so differently. We are not carbon copies of the original design, rolling off an assembly line but our Maker knows each intricate detail of how we function at our optimal level. If we go back to the manual when our appliance is malfunctioning, sometimes it is beyond us to fix the problem and even the designated local handyman finds that he too is unable to find the fault it, so it is returned to the manufacturer. Each of the people who have been skillfully…

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shellyn.hutson
shellyn.hutson
29 мар. 2019 г.

Amen, amen, amen. I am not defined by the diagnosis in my doctor's file, or by the judgement of those who use that label as a joke, an insult, or even a reason for pity. I am who God says I am. Love to you and to Kiara. Still praying xxx

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Jennifer Loris
Jennifer Loris
26 мар. 2019 г.

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janmcglashan
janmcglashan
13 мар. 2019 г.

Thank you Kiara for being an inspiration and teacher to us all, and to Jaci for sharing your wisdom and faith x

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Andree Heslop
Andree Heslop
12 мар. 2019 г.

The most beautiful blog sharing how the love of God permeates your family and through you, gives your children the love and security they need to face anything this world throws at them. Kiara is a prime example of this, she doesn’t see herself as damaged because she trusts what she sees in your eyes and in of those who love her.

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