Celebrating 31 years of being her daughter today. I am so thankful for her stability, her honesty and the security that she always gave me. .
This thing we call family looks a bit different sometimes since I don’t have the stories of growing inside her, or her DNA, or the day I was born but we have the story of how she took home the 28 weeker baby that the doctors said may not ever lead a full life, and then raised me to never ever, let anyone tell me that I couldn’t do something.
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She loved me enough to let me explore my heritage despite the pain that it caused her, and then she helped me put myself back together after it all fell apart. .
There are no words that describe how close I am to the two people that I call my parents. They’re not perfect, but they gave me a family & every opportunity I ever needed. I Love you Mum & Dad. Happy Adoptiversary.
As for my girls, I will raise them to think they breathe fire.
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I will not limit her to the ignorance of our ancestors.
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She will KNOW that she is powerful.
She will KNOW that she is worthy.
She will KNOW that she is beautiful. .
she will KNOW the multidimensional wonder of this amazing human experience, and that there is no reason she can’t have her feet firmly planted on the ground, while also knowing she is MAGIC. .
Happy international women’s day to all the mothers, sisters & daughters in my world. May the generations to follow, experience the freedom that we’ve been fighting for & will continue to fight for. #internationalwomensday
Today is rare disease day. Two of my three children have a known rare disease. Levi is one of only 150 in the world with hyperekplexia, and Lily is believed to be one of only 3 in Australia with 3M syndrome & around 20 confirmed cases worldwide.
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Unlike well known conditions, it’s incredibly difficult to get the right medical care since even the best doctors in our city and country struggle with how to treat it when there’s little to no known information on some of these conditions.
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And it was fitting that on rare disease day, today was a big one for us. After meeting with some of Levi’s team, it’s agreed that We will be heading to Sydney to meet with the movement disorder specialist in regards to the neurological episodes that Levi is having. They hope he can shed some light on what is causing some of the very concerning symptoms and how we can manage it better in the long term.
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A rare disease isn’t just about statistics, it’s a whole team being baffled by a disease they don’t know much about. It’s about our girl who is one of only three people in Australia. And our boy leaving an entire hospital scratching their heads. One of our brilliant doctors always tells me that knowledge is power. We need more research & we need better access to genetics testing. Thinking of all my fellow rare mums & dads today #showyourrare
