Embracing the Suck - A Parent and Physician's Journey with Rare Disease

“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 FaruquiIn 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.