“I was 24 years old and I was given a baby on life support machines and told to keep it alive.”

This is how Shelley Simon’s lifelong performance began. A relentless, unending, and critical performance. A weight of responsibility that nobody expects.

Her daughter Zoe was born with Congenital Central Hypoventilation Syndrome – CCHS. This is a condition of the autonomic nervous system that means Zoe needs to be on a ventilator. Currently, she only needs the ventilator while sleeping or when something goes awry.

It’s that last part that keeps Shelley on her toes. There is no time to drop the vigilance or step away from the performance.

But Shelley has learned to allow Zoe to do all the things kids like to do including skiing and snorkeling. As she has been shaped by Zoe, she has committed to helping others navigate this path, this performance, with courage.

We will talk more about this and her book “Beautiful Chaos” in the next episode.