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146: The Dad Perspective w/ Derek Dizney, Zach Schneider, + Juston Cheney
Manage episode 398653459 series 3248851
المحتوى المقدم من Madeline Cheney. يتم تحميل جميع محتويات البودكاست بما في ذلك الحلقات والرسومات وأوصاف البودكاست وتقديمها مباشرة بواسطة Madeline Cheney أو شريك منصة البودكاست الخاص بهم. إذا كنت تعتقد أن شخصًا ما يستخدم عملك المحمي بحقوق الطبع والنشر دون إذنك، فيمكنك اتباع العملية الموضحة هنا https://ar.player.fm/legal.
When it comes to parenting children with rare disease, there’s often a lot of focus on the moms and their experiences around birth, the diagnostic process, and the work of giving care. One group we hear a lot less from? The dads.
So in today’s episode, we’re digging in to the Dad side of things. Joined by Derek, whose daughter has intractable epilepsy, Juston whose son has CDPX1, and Zach who daughter also has a rare genetic disorder, these dads share what it was like rebuilding their family structure with rare disease factored in. They share their feelings around responsibility, helplessness, and the ways that they and their partners each coped differently in the wake of their children’s diagnoses.
These dads are so vulnerable and honest with us, and this episode is an absolute must-listen for anyone with a rare disease dad in their life!
Links:
Learn more about our upcoming The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come!
Listen to Ep 97 of The Rare Life on radical acceptance.
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Donate to the podcast or Contact me about sponsoring an episode.
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Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
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