Welcome to the podcast. In this episode, I share a conversation with Erica Stearns about hospitalizations. Erica is a researcher and disability activist, disabled adult and mother of two children with disabilities.
Being in the hospital happens in all different circumstances for families with special needs children. Erica and I talk about these in some depth. Sometimes it’s a sudden hospitalization or maybe it’s been planned for weeks. Sometimes we are fortunate to live near said hospital, whereas other times we may be hours from home. Sometimes the hospital can provide us with small moments of respite and other times that’s not a luxury.
Each situation has its own challenges. Erica shares that some small amounts of comfort or joy can also be found if you try. We also discuss the complexity of communication with our friends and family while we are in the hospital.
Erica and I also talk about that transition of heading home, as you are often completely depleted. And sometimes the cycle can start all over again, immediately.
All in all, we both hope this conversation can bring you closer to this community and gain some more insight and empathy for others in these situations. See you on the next episode!
Who is Erica?
Researcher and Disability Activist. Disabled adult and mother of two children with disabilities. Podcast Creator and Host of Atypical Truth. Statewide disability advocate in Illinois through The Arc of Illinois and The Division of Specialized Care for Children. 2022 Caring Across Generations Care Fellowship Recipient for the state of Illinois.
I grew up with disabilities that stemmed from rare birth defects which led me to have complex medical conditions. My disability became less visible as a teenager but continues impacting my daily life. In 2016, I became the proud mother of a child with disabilities due to an extremely rare genetic condition that was not discovered until our second child was born with the same condition in 2018. Margot age 6, and Cary age 4, are considered Medically Complex and Technology Dependent living with physical and intellectual disabilities that resulted from a rare genetic mutation on the LSS gene.
Connect with Erica:
Email: erica@atypicaltruth
IG: http://www.Instagram.com/ericajolene/
IG: http://www.instagram.com/atypicaltruth/
Website: www.atypicaltruth.org
Connect with Kara:
IG: https://www.instagram.com/Kararyska/
Website: https://www.kararyska.com/
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