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Jessica Stein  Wanderer in a past life πŸƒ Mum to the strongest human. Learning to advocate for extremely rare chromosome disorders. Email jessicamaystein@gmail.com 🌻


We have had a good few weeks at home, and although tiring, a successful week in hospital. Looking forward to getting back on the road together this week β˜οΈβ€οΈπŸ™Œ @landroveraus

I love you more than the moon and the stars πŸŒ• Blog post about our Ru through the link in my bio ✨

Our little rockstar 😎πŸ’ͺπŸ’•@patjamescooper

When a kind stranger randomly offers to take a rare quick snap of you altogether... and they turn out to be some of your favourite family photos ever! πŸ™ŒπŸŒ±πŸ˜›πŸ‘βœ¨

Those irreplaceable moments... when Ru met her first real Roo friends and was so happy that I thought she might burst and bounce away with them ❀️ I want to say a huge thank you to @landroveraus for loaning us our dream family car for the next few months. On top of making our lives between home and hospital easier, it has given us the possibility and freedom of these few days away together 🌿✨🐨πŸ’ͺ

We all think we're going to teach them, but really it's her teaching me... To smile. To hold her head, to sit on her own. To drink. To eat. To laugh. To embrace. To grow. To listen. To speak for herself. To walk. To run. To roam. To belong. To give. To love.
Maybe she won't be able to do all of these things, and maybe she will and so, so much more. Regardless we will be right beside fighting with and for her, as we have long before her birth.

Patience, understanding, joy, kindness and that true overwhelming love that comes from the pit of your stomach. She has been reteaching us our whole existences.

Cave exploring with this little Koala 🐨

Already missing this state of mind... We've just arrived home from the hospital after another long rough day (week, month, year) of feeling defeated and heartbroken trying to help our little Ru-bik's cube. Reminding ourselves that she will wake with a giddy smile in the morning, ready to take each day as it comes. 🌞

Nature is the best medicine 🌱🐴🌻Wearing my dream dress by @kivari_the_label (link in my bio) 🌿

For the past few months Ru's therapists have been pushing for us to go on a family trip away when possible. So when Ru had a better few days and no appointments last week we made a run for it and drove three hours south... We have been working hard at home and in therapy towards our personal goals for Ru. Recently she has been able to support her head and in the last few weeks has started tummy time, all with the ultimate hope of helping her to sit unassisted. Some things that can come natural to us is an enormous and sometimes impossible feat for someone with hypotonia.

On our first afternoon away we went to the beach late, explored the rock pools and plopped Ru down. And she sat. It may have only been for a few seconds before heading face first in to the sand, but for a few sweet seconds she sat on her own feeling the sand between her fingers and toes for the first time. I probably freaked a few people out while yelling for Pat to quickly take a photo... There are no words for the overwhelming pride and hope this gives us. For the independence it could give her. Sometimes you need to stop working so hard at something, take a step back and let it happen on its own. Go RuRu πŸ’ͺπŸ’•πŸš

Thank you everyone for constantly reaching out to see how our little girl is doing. For the past several weeks Ru hasn't been well enough to leave the house (or her IV pole and pump) beside her health appointments. It hasn't been all bad, just our ever changing 'normal'. On the bright side we have confidently learnt to self manage (besides a few sporadic ED visits), while Ru has mastered tummy time and is now rocking four teethie pegs. πŸ’ͺ❀️

"Here's to strong women. May we know them. May we be them. May we raise them." πŸ’ͺ✨

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