http://instatbt.com/Place/sydney-childrens-hospital-foundation/271482778Sydney Children's Hospital FoundationThank you.
It has been a mere 24 hours since we shared Ru's journey. We are in complete shock. How amazing that a community can come together to change lives. We promise to do our very best to pay this overwhelming generosity forward.
The heavy knot that has been in the pit of my stomach for months on end is now lodged in my throat; I am lost for words that will ever carry the weight of what this means to us.
Thank you. Thank you. Thank you.
http://instatbt.com/Place/sydney-childrens-hospital-foundation/271482778Sydney Children's Hospital FoundationWhat would you do if your daughter was born with one of the rarest voices of all, and you had an international audience that could be open to listening? There are a whole world of people out there who live in similar, and much worse situations to ours without anyone to hear them.
I have always been extremely private and had planned to keep my pregnancy and children offline, until they could make the choice themselves. But sometimes you make plans and life happens. We have struggled to decide if we should keep Ru and all her strengths and her battles to ourselves, or to share. To find anyone to relate. Maybe if we could help educate even just one person there would be more understanding... I started my blog as an outlet of personal distraction, hope and simply starting my life over after being hit by a car. Maybe all of this travelling and experiences with life were just building me up for something so much more.
Maybe it's not my voice that's meant to be heard, but hers... Pat and I have started a gofundme page to try and help us help our Ru. We have been trying our best to avoid asking for help throughout this tough twelve months, but there comes a point where we are running out of options. If you would like to contribute, or share we would be thankful beyond measure. Or if you'd just like to learn a tiny insight to our Ru and her incredible accomplishments and complexities please read here http://.com/our-little-warrior or through the link in my bio. 🌻 xx
Jessica SteinJessica Stein2017-10-10From early last week, making the most of a happy morning together before Ru's surgery.
Wearing spell_byronbay dress, part of their new collection launching tomorrow ✨ https://scontent.cdninstagram.com/t51.2885-15/e35/p640x640/22344901_136039320370551_5115967397190172672_n.jpg2017-10-10
http://instatbt.com/Place/sydney-childrens-hospital-foundation/271482778Sydney Children's Hospital Foundation"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars." - Khahil Gibran
Our little phenomenon, at home on better days. 🌻
Thank you for every single well wish, prayer and good vibes sent our way over the last few days, it has been overwhelming and dearly felt. We have been inundated with messages of support, advice and similar journeys from around the world. Some even made tangible offers that completely shocked us, like a local offering their spare room to crash in while we're living in hospital, and a $100 food voucher from friends we haven't seen in several years. These small gestures are ultimately huge, and are absolutely invaluable to us right now when all of our energy is best spent on Ru. Pat and I cannot thank you enough.
http://instatbt.com/Place/sydney-childrens-hospital-foundation/271482778Sydney Children's Hospital FoundationEvery day is a fight, but yesterday was the worst of our lives. Ru had urgent surgery for her intestinal malrotarion a few days ago. After a horrible day when the morphine increased and she was finally resting during her first Immunoglobulin Replacement Therapy (plasma transfusions) her stats dropped. No parent should know this feeling. I don't know how we made it through. But she did. Today the fight starts over again.
There are so many parts of life that we won't ever be able to understand unless we experience them ourselves, but we can try. I never knew the amount of love, hope, isolation, pain and suffering possible until caring and fighting for a chronically ill bub every day.
To anyone out there that knows someone going through a tough time but doesn't know what to do or say so thinks it is best to stay away until tough times pass, please don't. If you ask "what can I do" and they don't give clear direction, do what you can anyway.
Leave groceries on their doorstep. Freeze meals. Bring coffee. Turn up for a hug then leave. Watch their kids while they take a shower or a nap. Please don't stop texting even if they don't reply, they probably don't have words to explain it.
Ask if they need help paying rent, bills or with Centrelink forms as you know they haven't been able to work in a year. Ask if they need help getting to hospital or ED each day. Ask them if they want to talk, or sit together in silence. Don't tell them everything will be okay if they "just think positive sunshine and rainbows". Please don't assume we are on the same journey as other new parents. Please don't ask "what's wrong with her" just to know, and do nothing.
Please don't assume anyone has enough support around them as this is not always the case, and can be a difficult thing to admit. I have been begging for help and understanding from Doctors, family and friends this past year and try to focus on those who have remained and not feel the hurt of who is not here.
At the end of all the shit days these things go out the window. Because it's not about me and Pat, it's our beautiful girl that doesn't deserve any of this.
Jessica SteinJessica Stein2017-10-05Find what gets you through; the ocean, bare feet and remembering to look at the sky. Wind in my hair and favourite dress by fillyboo ☁️✨ https://scontent.cdninstagram.com/t51.2885-15/e35/p640x640/22277671_875397769286222_6052948477413949440_n.jpg2017-10-05
Jessica SteinJessica Stein2017-10-03Going to miss rare nights like these... ✨🥑🍷🌱 https://scontent.cdninstagram.com/t51.2885-15/e35/p640x640/22157968_1493011937455576_1688949683893829632_n.jpg2017-10-03
Jessica SteinJessica Stein2017-10-02Making the most of being outside, together 💘☁️ https://scontent.cdninstagram.com/t51.2885-15/e35/p640x640/22069486_314563699018702_6570214899522207744_n.jpg2017-10-02
Jessica SteinJessica Stein2017-09-28More than a delicate flower, she's a storm. ⚡️Wearing spell_byronbaytuulaxspellhttps://scontent.cdninstagram.com/t51.2885-15/e35/p640x640/21984871_1980588212198400_6641515372430229504_n.jpg2017-09-28
http://instatbt.com/Place/san-marco-catheral/284350034San Marco CatheralFor some reason whenever I visit somewhere I've been once before, I remember every alleyway without a map. This was my Mum's first time in Italy, and Europe so we woke early to wander the streets before the crowds. She thought we were wandering aimlessly, but before long I'd weaved our way through the canals to this view of San Marco. I don't think I'll ever forget her face lighting up. So many simple, irreplaceable memories like these get me through some tough times and give me hope and excitement to see the same wonder in my daughters eyes when we show her the world one day. ✨
http://instatbt.com/Place/manarola/227274827ManarolaAfter living in hospital for the majority of the past 10 months I'm excited to be part of the happyontheinside movement with superelixir and working with them to get my insides back to their healthy & happy self.
This photo is from a year ago in Cinque Terre... I love thinking back to this morning, ecstatically six weeks pregnant and looking up at Manarola while floating on my back in the sea 🍊🌱🌞 What makes you happy? 🌻
http://instatbt.com/Place/manarola/227274827ManarolaEveryone asks me if I miss travelling since becoming a mum. Sure, parts of me miss making friends of strangers. I might miss waking up and not knowing where the day will take me. Witnessing, learning and enjoying experiences I hadn’t encountered before. But to be completely honest I get to do all of these things everyday thanks to my own little tiny human. Travelling may allow you to bare witness, but parenting teaches you yourself.
http://instatbt.com/Place/tulum-quintana-roo/225838969Tulum, Quintana Roo"By all means, go out into the world and explore; kiss strangers, kiss friends, fall in and out of love until your hands and heart are libraries of all the people they have touched. Before long we all learn, right down to our bones, that some people are hostels, and others are homes."
http://instatbt.com/Place/tulum-quintana-roo/225838969Tulum, Quintana RooHappy birthday my love patjamescooper 💕 As much as I'd love to be back in this treehouse celebrating like last year, having all three of us together this time means so much more.