March 05, 2024

Courageous Motherhood: A Caregiver's Journey through Disability and Hope

53 minutes

Jessica Patay shares her journey as a caregiver for her son, Ryan, who was diagnosed with Prader-Willi Syndrome at five weeks. Prader-Willi Syndrome is a rare genetic disorder that requires 24/7 supervision and care due to its associated symptoms, including low muscle tone, delayed milestones, and an insatiable food drive. Jessica talks about the difficulties she faced with her newborn, Ryan, who was unable to cry or suck and needed a feeding tube and occupational therapy. Managing Ryan's anxiety about eating is an ongoing challenge that requires constant monitoring of the kitchen.

Jessica discusses the impact of her son Ryan's condition on her family and the importance of maintaining a healthy balance. She prioritizes spending one-on-one time with her other children and taking trips without Ryan. Jessica also emphasizes the importance of having a supportive community and resources for caregivers. She has created an organization called "We Are Brave Together" to provide a platform for caregivers of disabled children to connect and find support.

Jessica plans to set up a care plan for her son Ryan before she and her husband become incapacitated or pass away. She also emphasizes the need to take breaks as a caregiver and empower their children to survive without them.

About Jessica:

Jessica Patay is the founder and executive director of We Are Brave Together (WABT), a 501(c)(3)nonprofit organization that supports caregiving moms with children of all types of disabilities and neuro-diverse diagnoses. In addition, she is a sought-after speaker, podcast guest, writer retreat coordinator, fundraiser, mother of three, social influencer, and a champion of self-care practices and their positive effect on motherhood. Jessica excels at creating and supporting communities of caregiving moms, and she is a visionary for the disability community worldwide.

Jessica’s mission is to combat the isolation and burnout that these moms and their families face by creating supportive, resourceful, and empowering communities and meaningful connections. Her vision is that every family in the disability community is strengthened, equipped, and inspired for their unique journey. This vision has fueled WABT’s growth in 6 years into an international community of over 2200 moms, representing all 50 states and 24 countries. Jessica has helped launch dozens of support groups throughout the U.S., New Zealand, and Australia. To extend her outreach, Jessica hosts a podcast, “Brave Together with Jessica Patay,” which offers a library of inspirational stories and resources for the disability community.

Connect with Jessica:

Web https://www.wearebravetogether.org/

Facebook https://www.facebook.com/wearebravetogether/

Instagram https://www.instagram.com/wearebravetogether/

Support the show

Confessions of a Reluctant Caregiver

Sisterhood of Care, LLC

Website: www.confessionsofareluctantcaregiver.com

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