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Family Weekend and Conference 2015
This week I have been trying to cross a few things off my very long ‘to-do’ list, and writing about the family weekend and conference we recently experienced has finally been given a few moments space....
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Do you know?
Do you know I have a daughter, who is worth her weight in gold, Do you know the things I wondered? All the stories I was told? Do you know how often tears fell as I gently felt her kick? Do you know...
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Term one is done!
I have been really terrified to celebrate too soon, the success that kindergarten has been for Claire. Our family, friends and extended community have funded this, and so many people have been ‘in our...
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How to help get Claire to Kindy
Originally posted on Claire Matilda: People are contacting us asking how to help, and we are very grateful! The short answer: Share, share, share our posts and links on Social Media (and ask your...
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The Gift of Stella
The hardest part of this journey by far has been having our eyes opened wide to the fact that life is not always fair. There is nothing fair about illness that debilitates a child, or that takes their...
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Editing is Exhausting
People often tell me how amazing I am, and how well I ‘handle’ all of the responsibilities that come with being mum to Claire. They ask how on earth I find the time to advocate for her needs, but the...
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How to help get Claire to Kindy
People are contacting us asking how to help, and we are very grateful! The short answer: Share, share, share our posts and links on Social Media (and ask your friends to do the same). This truly has a...
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Let’s Get Claire to Kindy
When Callum turned 4, he started at Kindy. I packed his lunch, labeled all his belongings, and dropped him off after about 15 minutes in the room. He was happy, I was happy, and I knew his needs would...
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My startup disk is nearly full
I have been cleaning out old files on my computer this evening due to the arrival of that pesky Mac warning, “Your startup disk is nearly full”. I had to delete a significant amount of files to free up...
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Life in the Garden City
Our family has recently made a big move, from the Gold Coast to Toowoomba. We have been here for almost a month now, and the change so far seems to have been a positive one. Matt is thoroughly enjoying...
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I wish I knew
The night before Claire was born, I wish I knew that she was going to be born alive. The day that we were given Claire’s diagnosis of Cri Du Chat Syndrome, I wish I knew that this diagnosis was going...
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Life in the Garden City
Our family has recently made a big move, from the Gold Coast to Toowoomba. We have been here for almost a month now, and the change so far seems to have been a positive one. Matt is thoroughly enjoying...
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AWOL
I know I’ve been AWOL. When Callum started school, I was unexpectedly taken aback by the awful affliction of anxiety. Serious anxiety. The kind where your heart skips a beat, you breakout in cold...
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Better Start Stakeholders Meeting in Sydney
As part of the expansion of the Better Start for Children with Disability (Better Start) initiative, the Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA), invited me...
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Dreaming of a White Christmas
Cuddles for Claire, in her stroller which the Gold Coast Community Fund helped to fund. Earlier this year, we were contacted by the Gold Coast Community Fund with the offer of support in covering the...
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Growing together
A picture speaks 1000 words, right? Look at my babies and how they have grown. I love them both more than I could ever express with words.
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Jerome Le Jeune
I just came across the Wikipedia page about Cri Du Chat Syndrome, a page I have not visited for a long time. Two years ago, I sat outside with Matt, and I read the text in somewhat of a daze, and...
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D-Day: Part 1
Reblogged from Claire Matilda: Today is D-Day. Diagnosis Day. On this day last year, we were given the news that our beautiful, perfect baby girl had a rare genetic disorder called Cri Du Chat...
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Not quite right yet, Senator McLucas
Claire, Zoe and I attended the launch of the expansion to the Better Start for Children with a Disability Package this afternoon at the Cerebral Palsy League in New Farm, as representatives for Cri Du...
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Full is way better than empty
I have always been full of life, enthusiastic, motivated and somewhat confident in many ways. I have tried many things (my attention span tends to see me move to the next rather quickly!), and have...
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