“I’m made of nails.”

“No, you’re not.”

When her daughter's doctor said this, Shelley Simon began to recognize that there is no way to avoid the challenging and dark thoughts that invade one’s mind when life feels too much to bear. The terror during her daughter’s seizures. The times she wanted to just drive off and give up. The questions of “what if.” Her book BEAUTIFUL CHAOS captures those thoughts and allows moms and dads who are raising rare kids the grace to feel what they are feeling. To not lose themselves in the fight for their kiddos’ lives.

In our conversation, Shelley connects with Brittany as a ‘big sister’ passing along wisdom she has gained from parents who have gone before her. She feels a need to continue passing these honest words is return for having her beautiful daughter.

This is one of the deepest conversations we have had on Raising Rare.

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.

“I have no idea what I'm doing. I've never done this before. I am a pediatrician, but I have not been trained on this. I couldn't be more qualified to be Soraya's mother, and yet I am clueless.” Tasha Faruqui

In this conversation, Dr. Tasha Faruqui shares her lived experience raising her daughter who has been diagnosed with TAOK-1. It is a story of simultaneously seeing two sides of the rare disease experience. And that surfaces a ton of insights that parents raising kiddos with rare disease can learn from.

As a pediatrician, she understands medical terminology, lab results, and other measure. As a mom, she now knows what it feels like to be gaslighted. This experience has shown her the value of honesty, in both directions and with her children.

Her family has coined the term “sucking the joy out of life” which perfectly captures the duality of the situation. Undoubtedly, a rare disease can take a huge emotional toll and, at the same time, bring the moments of joy into stark focus. It all depends on how you look at it.

Tasha wants our listeners to understand that the story is not finished. Not hers. Not theirs. You can learn more about her ongoing story in her book KEEP YOUR HEAP UP: A MOTHER’S STORY OF CHASING JOY IN THE FACE OF GRIEF.