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3 years ago, Your Daddy woke up and snuggled you, he fed you breakfast, he bathed and dressed you. You were bright and full of smiles, the special ones you saved for Daddy. Later, we went out for coffee. Mummy wanted you to have more fluids, so we went to get the grape flavored pedialyte from the pharmacy. (Mummy was convinced you liked it better). You seemed to have turned a corner. When the nurse called, Mummy said we didn’t need a visit today. You were so much better. She told Daddy to go out for a little Daddy self-care hour. You and Mummy snuggled on the couch while we waited for him. You lay on top of her the rest of the day. She can still feel your warm body asleep on her. Your heart on her heart. When she got up, she held your body against hers. She didn’t put you down all day. She was so used to your low muscle tone, your breathing less, she didn’t notice if it was worse than normal. This was our normal. You had a seizure, Mummy gave you your meds, you went back to sleep on Mummy’s heart.

Your Aunty C and little friend O arrived in the evening bringing warmth and love as always. We’d planned to have pizza for dinner with our little families. Another seizure came and Aunty C held you close while Mummy went to get your rescue meds. Out of my embrace for only moments, the first time in hours. You took your chance.

I know you couldn’t do it while I held you.

You lay with us. Your Daddy and I both begging you to come back. Take one more breath. But there were no more left.

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Hello Sunday, hello new faces and old.
Who am I and why should you care? I’m Priyanka, I’ve had 3 pregnancies, born 2 babies and have one living child, and one amazing husband. Our first born, Baby Lily is forever 10 months old. Everyday I carry hope, love, happiness, sadness and grief. Yes they all sit alongside each other in a familiar ’achey after a long walk’ sort of way.
Im here to share that the struggle is real and that good things still happen even when you have lost hope. That motherhood is hard and all kinds of magical, no matter if your child is healthy, medically complex or living in the stars. That you can survive and even thrive after trauma but still never get over it. That it is ok to be a different you from the person that you were before. That there is an incredible community of women here to help carry you, in your hardest moments. Starting with me showing up here for you💥 💋P x

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When Lily was first diagnosed with a rare and terminal disease I wanted to pack my bags and run. For a time I lived in denial. Denial about raising a child with a disability, denial that Lily would die before me. I still wish I could change the way our story ended. But I cant. brenebrown says ‘Owning our story can be hard but not nearly as difficult as spending our lives running from it.’ For most of us, it is difficult to own our stories of loss and challenges in a society that doesn’t want to acknowledge or talk about it. But when you do - the power and connections that come from it are mind blowing. It unites us. Me with you and you with so many others. Thats why I share - that’s why I want you to share your story too. Would you be interested in sharing your story on our blog once our website is updated? Let me know👇🏽
Please join me tomorrow night at 8pm with Rachael, author of Mackenzie’s Mission, to hear about her babies and her story which changed the public health policy of our nation #mackenziesmission #lilycalvertfoundation

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Lily wants know more about you. Tell us, where do you live? Do you have kids (earth and angel both count). Aaaanndd are you
🍭Salty or sweet? 🍷Vino or cinno? 🎥Movies or TV series
Mamma is Salty, Vino, TV... Dont be shy! Especially if you don’t usually comment - we wanna know about you!!! Your turn👇🏽

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My son’s foot is white, my foot is brown, my mum’s foot is white, my grandfather’s foot is brown. Why does it matter and what does it mean in Australia?
I am privileged, I am not indigenous, I do not want to say that I understand what BIPOC people are experiencing or that I am hard done by. I do not want to make this about me. I am privileged and I don’t want you to feel sorry for me. But I do have an insight into the systemic and ingrained racism that exists in our world. It happens every time someone asks if I am Jasper’s Nanny. No, I am his mother. Or when people look at me warily in the supermarket when Jasper does his favourite party trick - shouting loudly for mummy when I am standing right next to him. ‘Is she his mum?’. Or the countless times as a child that my blonde mother was asked ‘Are those kids yours or did you adopt them?’. Or worse, the mortifying times in particular overseas countries that I have been treated like a hired escort - simply because I am with a white man in a posh hotel. That is the ingrained stuff. It can happen to any person of colour, of any social or economic standing. I’ve been so inspired to see everyone taking time to learn this week. Keep learning and thinking. And most of all lets keep teaching our children. That is all 💖
Love me
Ps Tell me what you have learnt this week?

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