ジェシカ・スタインのインスタグラム(tuulavintage) - 10月7日 11時28分

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.

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