Boho blogger, Jessica Stein (aka Tuula Vintage), has shared a very moving post about her struggle the last few months with her sick baby girl, as well as an important call to action for all of us.
“Every day is a fight”
While Jessica’s Instagram page is usually filled with swoon-worthy travel snaps, she allowed her followers a glimpse into the pain she’s been living the past few months since becoming a new mum to her little girl, Ru.
View this post on Instagram
Every 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.
Born premature in April, baby Ru has been in and out of hospital battling with a rare chromosome disorder. The snap which was taken at the Sydney Children’s Hospital in Randwick is of Jessica clutching Ru’s teeny fingers in hers.
She captioned the post: “Every 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.”
A call to action
With words that will resonate with all of us who have ever felt hopeless upon watching a loved one, family member, or even a distant friend go through a hard time, Jessica encourages us all to just give, even when we don’t know what to say and assume it might be better to keep our distance.
“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,” she writes.
“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.”
Love in action
As for what we could do for those in our lives who are struggling, Jessica offers practical suggestions, like leaving groceries on their doorstep, freezing meals, bringing coffee, a quick hug at the door or simply offering to watch the kids while they have a shower or nap
“Please don’t stop texting even if they don’t reply,” she adds. “They probably don’t have words to explain it.”
“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.”
The power of words
As soon as Jessica shared her personal plight, her Instagram was inundated with comments of love and support. Among them:
“Sending love. One day at a time. I just fought for 18 months with my 6 year old son, a big battle with cancer. And I know how you feel. Big hug.. Stay strong and cry whenever you want. You have a beautiful soul there. Sending love” – Melbaty00
“Strength sometimes comes in numbers, and so it seems here, reading all of these. Strength can also come bundled up in teeny tiny packages, and from your words, your little one is one hefty warrior. Sending everything that is good and safe, from across the Tasman ” – Christinamacpherson
View this post on Instagram
"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.
Pay it forward
With a full heart, Jessica returned to Instagram to thank her followers for their support, revealing how tangible offers of help, including someone offering her and Pat a place to stay while visiting Ru in hospital were greatly appreciated.
While this story warms the heart, it’s important to take note too. If you know of someone having a hard time, don’t be afraid to offer a hand or reach out. Especially is she’s a new mum who may not have had the birth or new motherhood experience she was hoping for. Love and help is always appreciated.
View this post on Instagram
We have been pinching ourselves all day, every day for the past twelve weeks since our beautiful daughter arrived. I always knew it wouldn't be easy for me to become a mother, but I never thought these first precious months would be so hard for her. We're still living in hospital a few hours from home and taking each day as it comes, learning from and loving every moment with her. We are hoping to be back home in the coming weeks to settle in and enjoy our new chapter together. Until then, I wanted to thank everyone for your well wishes and patience. When I get a moment or need for distraction from hospital life I will be posting some unpublished or favourite photos from old travels, until we're all happy and healthy enough for home, then travelling as a family. I would be lying if I didn't admit this is extremely tough, but so is she 💕💪
Sending love to fighter Ru and wishing her parents every strength in their journey ahead.