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Adjusting the Sails

Adjusting the Sails

Auteur(s): West Virginia University Center for Excellence in Disabilities
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À propos de cet audio

Adjusting the Sails is a podcast aimed to discuss the lives and specific challenges children with special health care needs and other disabilities and their families, caregivers, and service providers face, and how to manage those challenges. The podcast will serve as a platform for all disability-related topics to be discussed and as a mediator between families and caregivers to share their stories and experiences. The podcast will feature guest speakers, panelists, and a variety of program representatives and service providers to offer education and training to the listener. This podcast is sponsored by the West Virginia Department of Health and Human Resources, Office of Maternal, Child, and Family Health/Children with Special Health Care Needs Program and the West Virginia Family 2 Family Health Information Center and produced by the West Virginia University Center for Excellence in Disabilities.2022 Science Sciences sociales
Épisodes
  • Weylon the Warrior: A Mother’s Journey Through Adoption, Advocacy, and Hope
    Aug 29 2025

    When Gennifer and her husband got a late-night call about an unexpected baby, they had no idea it would lead them to a life filled with challenges, resilience, and unconditional love. In this heartfelt episode, Gennifer shares the powerful story of adopting her son Weylon, born with a brain injury and complex medical needs. From navigating seizures and hospital stays to building a strong family bond and advocating fiercely for his care, Gennifer opens up about the realities of raising a child with disabilities, while balancing a large, blended family. Her journey is one of perseverance, community support, and redefining what’s possible when love leads the way.

    Sponsored by the West Virginia Department of Human Services, Office of Maternal, Child, and Family Health/Children with Special Health Care Needs Program and the West Virginia Family 2 Family Health Information Center and Produced by the West Virginia University Center for Excellence in Disabilities.

    Episode Transcript Here

    If you have a story that you would like shared on the podcast, please send us an email at courtney.ringstaff@hsc.wvu.edu

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    47 min
  • The Weight of Grief: Life After Hadleigh - Samantha Coyne
    Jul 1 2025

    **Content warning: episode discusses child loss.**

    In this powerful episode, Samantha Coyne—WVU Law student, LEND trainee, and devoted mother—shares the story of her daughter Hadleigh, whose life and unexpected passing reshaped Samantha’s entire sense of identity and purpose. From a complicated pregnancy and a rare diagnosis of Noonan syndrome to joyful moments of motherhood and exhausting advocacy, Samantha takes us on a journey of love, loss and resilience. She opens up about the isolation, medical challenges and systemic gaps that families of children with disabilities often face. Her reflections resonate with any caregiver whose world revolves around their child, especially when that world is shattered. This conversation is a raw and honest look at what comes next when the child you lived for is suddenly gone.

    Sponsored by the West Virginia Department of Human Services, Office of Maternal, Child, and Family Health/Children with Special Health Care Needs Program and the West Virginia Family 2 Family Health Information Center and Produced by the West Virginia University Center for Excellence in Disabilities.

    Episode Transcript Here

    If you have a story that you would like shared on the podcast, please send us an email at courtney.ringstaff@hsc.wvu.edu

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    1 h et 17 min
  • When the Pilot Is Mom: Steering Through Crisis and Care with Brandi Williamson, Parent Network Specialist
    Jun 2 2025

    Brandi Williamson, a Parent Network Specialist (PNS) with the WVU CED and mother of four, shares her powerful journey after learning at 23-weeks pregnant that her daughter had spina bifida. What began as a routine ultrasound quickly turned into a life-altering diagnosis, an emergency delivery at 25 weeks, and a crash course in neonatal intensive care. In this episode, Brandi opens up about the emotional and medical turbulence she and her daughter faced, and how she stepped into the role of pilot – navigating uncertainty and advocating fiercely for her daughter’s care. Now a professional supporting other families, Brandi reflects on how this journey shaped both her life and her purpose.

    Connect with Brandi and our team of other PNSes.

    Sponsored by the West Virginia Department of Human Services, Office of Maternal, Child, and Family Health/Children with Special Health Care Needs Program and the West Virginia Family 2 Family Health Information Center and Produced by the West Virginia University Center for Excellence in Disabilities.

    Episode Transcript Here

    If you have a story that you would like shared on the podcast, please send us an email at courtney.ringstaff@hsc.wvu.edu

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    55 min
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