Atypical Truth was inspired by the desire to cultivate a safe space for those within the disabled and medically complex community to explore a wide variety of sensitive subject matter and to provide resources related to caregiving. Atypical Truth navigates an array of topics that pertain to life as caregivers, disabled individuals, and/or individuals with a complex medical condition. Atypical Truth will further explore how these topics intersect with a variety of identity factors such as race, gender, age, size, class, culture, location, sexuality, and language.
Drawing from personal experience having been a child with disabilities, a parent of two children with life-limiting complex medical conditions, along with my experience working as a medical professional; the idea of Atypical Truth was conceived to address the realities of life as a caregiver. Through the stories and experiences shared by guests and myself, it is my hope that Atypical Truth will serve as a beneficial resource to families like our own, with the ultimate goal of helping those within the our community to feel connected and understood.
Erica with tracheostomy, age 2.
Sibling cuddle puddle, Margot (4) and Caratacus "Cary" (2)
As a result of being born with non-isolated esophageal atresia and tracheoesophageal fistula, I was mute until the age of 3, g-tube dependent until the age of 5, and tracheostomy dependent until the age of 15. Throughout my childhood and early adulthood, I witnessed my parents face numerous challenges as we confronted many complex medical issues.
Today, I am the proud mother of two beautifully bald miracles, Margot and Caratacus. As a result of an extremely rare and only recently discovered lanosterol synthase (LSS) genetic mutation, our children have a long list of diagnoses including profound intellectual and physical disabilities. Both my childhood and now my parenthood have and will continue to consist of numerous operations, life-sustaining medical equipment, doctors appointments, frequent hospitalizations, therapy services, difficult decisions, hard conversations, and countless joyful moments to feel absolutely blessed for.
The beginning of my journey as a parent of two with complex medical conditions was equal parts unexpected and frightening as it was exciting and enlightening. I soon realized that the sum of my life experiences had prepared me to be exactly the mother my children needed me to be: a fierce, vocal, and experienced advocate for their quality of life. Through the gracious support of wonderful friends, I was encouraged to use my unique voice to share more about my atypical life.
The word atypical was one we began to hear on repeat throughout the first year of our children’s lives. Initially, I despised this word and all that it stood for because it felt like a medically PC way of saying “different from everyone else.” The most despised aspect of this word was understanding that it meant we were heading down a path rarely traveled by others, a path in which science ends and faith begins, a path where no miracle drug existed, a path with no road signs directing what turns to take, advising what decisions to make, nor indicating what the future might hold. Upon examining my own life experiences with disability, I came to see the beauty of the unknowing and the life unlived by many others. I began to wear atypical with pride and embrace the beauty of my atypical life.
The truth component of the title was derived from my desire to educate society by providing a multi-dimensional perspective of this life from all angles. Through the lens of my experience in all roles (patient, parent, caregiver, and medical professional), I can say with confidence that it is integral for our community to learn from storied experiences to better understand the journey, purpose, and intentions of those who enter our complex lives. We are all just humans after all, trying to show up as our best selves for the people we care about.
Christmas, 2020 (Erica, Randy, Cary, and Margot)
Atypical Truth will strive to be an accessible public space where people like myself can honestly explore vulnerable subject matter free of judgment. We will celebrate the smallest victories, revel in new discoveries, discuss the shared obstacles, and learn helpful coping strategies from the challenges that others have navigated. Atypical Truth will be a platform for the disabled and medically complex community to refer to when in need of finding their people, using their voice, and hearing stories that mirror their own.
For listeners who can relate to content that is shared on Atypical Truth, my hope is for this podcast to serve as a platform to bridge the physical gap between our rare but shared lives.