Part 2: Words We Don’t Say Out Loud

“I’m made of nails.”

“No, you’re not. You are not made of nails.”

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.    

Get your copy of Beautiful Chaos by Shelley Simon.

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