Life off the beaten track isn't as bad as you think.

Last week I attended a Consumer Conversation regarding the Women's, Child and Youth Health Plan for the next 10 years in South Australia.

I am fairly confident that had Pippa not entered our lives and turned it upside down in the most unexpected, life changing, difficult and glorious of ways it is not something I would have gone to prior her landing earth side.

You see I attend every one of Pip's appointments, admissions, therapy sessions, test always ready to question. Learn more. Push for answers. Say no when needed; just be her advocate in general. She is the reason my eyes have been opened to this new world of having a child with complex needs. The mum of a child with a disability. The mum of a babe who is going to take the path less travelled. I will jump up and down and cross whatever obstacle in my path to get the best care for my baby and this was another way to do that.

You know another reason I went? You.

The mum who has something to say but the thought of talking about her/her babe's story in front of a room of strangers makes her want to run.

The mum who is stuck in hospital with her babe and physically can't attend a meeting.

The mum who struggles to find her voice but has something to say.

The mum who so desperately wants to advocate for her babe however at the moment is hoping to just survive the next hour.

They needed US in that room. Because they needed the human perspective. They needed to know that when you have are in the baby's ward, you can only get a comfy recliner chair if you're breastfeeding. My baby was fed via a feeding tube, guess how that made me feel? Then lets add if you are lucky enough to get a recliner, its ripped to shreds and actually cuts you as you cuddle your sick baby through the night.

They need to know the financial impact on families who need to travel for medical care and/or just being in hospital in general. You need to find a way to feed yourself, pay for parking all whilst juggling a sick baby solo because your partner has to be at work or home holding the forte with your other babes.

They need to know how they can improve the human aspect of our health care system (which compared some countries is AMAZING). Because when you know better, you can do better. Our systems will not improve without people with experience IN the system providing this feedback in a constructive and open manner.

So thank you to Maggie Alice and Aria Ashlee who understand that sometimes Mum can't be home while I attend a meeting or event that enables me to contribute in a small way to the bigger picture. I am how they will grow up to perceive women and I wear this badge with honour.

Thank you to my beautiful Pippa Alee for opening my eyes to how amazing, glorious, hard, diverse, caring and giving this world can be. Thank you for taking me off the beaten track and finding this amazing village of women who myself and Pauline are here to serve.

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