About three years into the story of trying to help Leia, I was considering a very controversial treatment that involved spending tens of thousands of dollars, taking my family into isolation for a month to work intensively with our child. At the time I remember feeling profound stress. The clock, I was told, was ticking. Everything I did for my child during this early, first phase, was essential for her neurodevelopment. The experts and their knowledge was overwhelming. I was willing to try anything.

Still it was a lot of money and my husband quite reasonably wanted to speak to someone who had done the treatment. He wanted an objective opinion. I didn’t know who to turn to but as chance would have it, and yes life always seems to present me with these moments, it appeared my neighbour knew someone who had done the course. I was very anxious to hear from her and when my neighbour did come back to me, it became clear to me that this woman was still experiencing a lot of grief.

I don’t remember the name of this woman and I have never spoken with her since, but the 30 mins we did speak were unforgettable. She told me that the course was not as she had expected and that she had a lot of criticism. She also told me about Sonrise, another course I did end up doing several years later, that she felt was a genuine and authentic endeavor. But the most poignant part of what she told me had nothing to do with possible treatment options for my daughter.

She told me that if she was me, she would take all the money and go on holiday with the whole family. She said she was no longer married and her eldest son didn’t speak to her. She said, “I made a lot of miracles happen with my child, but can I tell you it was worth the price? I paid a very heavy price.”

Hearing this lady basically tell me to focus on myself and my family was something of a revelation. Nobody until that point had ever told me to focus on myself and my family. It was like a huge weight was lifted from my shoulders.

When you are in the war zone and it is a war zone those first few years, when you are taking advice from everyone, grieving profoundly over the challenges your child is facing, terrified about how this is going to impact every aspect of your life, grappling with isolation and the realization that this is not going to be an easy to fix, when you are in that place, it is very hard to see the wood from the trees. You are just chopping branches down wherever you can in the hope of finding some light.

Years later, and I am now years later, I can see what this woman was saying. Her solution and it was a good one, was to take a break, put the focus on something else, but actually what she was saying is that the more balanced you can become the better the outcome will be. That “the price” here is more involved than just saving your kid. It’s a simple message but a profound one. I think the question how can we become more balanced in the face of such adversity needs to be understood on many levels – it touches the very heart of our dilemma. Because actually it requires us to work on ourselves.