From being born into a family with Kristi already navigating the challenges of Rett syndrome, Kourtney’s story is one of dedication, loss, and profound love. Kristi was born in 1965 with a rare neurological disorder that affects primarily girls, which led her to lose many of her early developmental skills between 6 and 18 months old. The disorder wasn’t formally diagnosed in the United States until 1986, so for the first 21 years of Kristi’s life, the family had no name for what she was living with. Kourtney, the youngest of five, was seven years behind her siblings and grew up with Kristi already in a group home.
Kourtney’s relationship with Kristi went beyond that of a typical sibling dynamic. She served as her sister, caregiver, and advocate, navigating the complexities of Kristi’s condition and her family’s evolving needs. Despite the challenges, Kourtney’s memories are filled with light moments and profound connections, like when Kristi laughed at a joke no one thought she would understand, signaling that “she’s in there,” a realization that challenged every assumption they’d been told about her mental capabilities. The family finally received a formal diagnosis of Rett syndrome when Kristi was 21, after a neurologist encountered a presentation by Dr. Andreas Rett, the doctor who discovered the syndrome. This brought a mixture of relief and frustration, as it came too late to change the course of Kristi’s treatment, but finally gave the family a name for what they had been living with for so many years. Kourtney became heavily involved in the Rett community, both as an advocate and later as a professional, dedicating her life to helping other families and teaching children with Rett syndrome how to communicate through eye gaze technology.
In this episode, Kourtney shares her journey through anticipatory grief, the lifelong process of caring for a sibling with Rett syndrome, and the unique pain of losing not just a sister, but the person who shaped her identity. She reflects on how her life and career have been deeply intertwined with Kristi’s presence, leading her to work in the Rett community as an advocate and teacher. Kourtney’s story is a testament to the enduring bonds of sibling love, the complexities of grief, and the resilience it takes to rebuild a life after such a significant loss.
In this episode:
(00:00:55) – Introduction to Kourtney’s Family Dynamic and Kristi’s Early Years
(00:10:09) – Understanding Rett Syndrome and the Impact on the Family
(00:18:34) – The Evolution of Kourtney’s Role from Sister to Caregiver
(00:27:00) – Navigating the Medical System and Anticipatory Grief
(00:36:42) – Kristi’s Communication Breakthrough with Eye Gaze Technology
(00:46:39) – The Final Years: Health Declines and the Emotional Toll
(00:51:41) – Grieving Kristi’s Passing and Finding Purpose in Advocacy
This Episode is Sponsored by The Surviving Siblings.
Connect with Kourtney:
TikTok: https://www.tiktok.com/@kbjourney75
Instagram: https://www.instagram.com/kourtney0715/
Facebook: https://www.facebook.com/kourtney.barnum
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Twitter: https://twitter.com/survivingsibpod
Website: https://thesurvivingsiblings.com/
Facebook Group: The Surviving Siblings Podcast
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Patreon: https://www.patreon.com/TheSurvivingSiblingsPodcast
