Susan Hedstrom: Family Life with a Special Needs Child

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Imagine thinking you had it all under control, only to have life throw you a curveball with the surprise arrival of a special needs child. How would you respond?
In today's moving episode, we have the pleasure of introducing super mama Susan Hedstrom who with fearless honesty opens her heart to share how she manages the intricate dance of navigating family dynamics while caring for her son, Jayden. Jayden was born with the rare genetic disorder of Prader-Willi syndrome, a condition laden with physical, mental, and behavioral obstacles, including an unrelenting hunger that sets in around the tender age of two.

Through Susan's authentic and unfiltered narrative, we are invited into the daily juggling act of meeting Jayden's intricate needs while nurturing her two younger children, fostering the foundation of her marriage, all while ensuring she carves out essential moments for herself. Susan gently reminds us of the beauty of embracing the 'new normals' and cherishing every milestone in Jayden's progress, affectionately terming them "inchstones" – small victories worthy of celebration.

At the heart of Susan's story lies the importance of flexibility and patience, alongside the pivotal role of leaning on one's partner, friends, family, and community services for support, rest, and joy. Join us as we dive into Susan's inspiring story, brimming with resilience, love, and the unwavering determination to find balance amidst life's most challenging moments.

BIO:

Susan Hedstrom has been the Executive Director of the Foundation for Prader-Willi Research (FPWR) since 2013. Her commitment to this role was deeply rooted in a personal journey that began when her eldest son was diagnosed with Prader-Willi syndrome. Faced with the challenges posed by this rare condition, Susan made a conscious decision not to accept Prader-Willi syndrome as it had been traditionally defined. Instead, she chose to collaborate with a remarkable team of proactive and tireless individuals within FPWR to find treatments and ultimately a cure for Prader-Willi syndrome.

RESOURCES/ REFERENCES:

Foundation for Prader-Willi Research

Thank you for tuning in to today's episode! We hope you enjoyed the discussion and found it both insightful and inspiring. Now, we want to hear from you! Share your experiences, questions, or ideas with us by leaving a comment or sending us a message on our website or social media channels.

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Disclaimer: The information provided in this podcast is for educational and informational purposes only and should not be considered as professional advice. Listeners are encouraged to seek guidance from qualified professionals for their specific situations.