148: The Family + Friends Perspective | What it’s Like to Watch us Navigate Life with Our Medically-Complex Children w/ Kassie Harbath
02/15/24 • 87 min
Our kids touch the lives of everyone around us, but especially our close family and friends. But we don’t always get to hear that perspective from the outside.
So on this episode of The Rare Life, we’ll finally get to hear from those close to us about what it was like to watch us endure trauma, explore parenthood with a medically complex child, and try to figure out the best ways to support us. Kassie Harbath, auntie of Sloan, a little girl with CHARGE syndrome, joins us to sort through all these complex feelings.
And, this episode is so well-timed, because we’re also starting our Family + Friends Fundraiser! Get more info on the fundraiser at https://therarelife.org/fundraiser.
Also, thanks to the many families and friends who have already donated and sponsored episodes, including the loved ones of Alyssa Nutile, mom of Gemma who has Pyruvate Dehydrogenase Complex Deficiency (PDCD). We couldn’t do it without you!
Links:
Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come!
Donate to the fundraiser here.
Hear the story episodes of the loved ones whose family and friends who shared today: Alyssa Ep 140, Libby Ep 95, Bek Ep 133, Marci Ep 114, Brianna Ep 105, Madhura Ep 117, Suzy Ep 124, Kari: Ep 123, Ep 10, and Ep 11.
Listen to Ep 146: The Dad Perspective.
Listen to Ep 104: How to Support the Parents of Disabled Children.
Read Show Up and Bring Coffee by Megan Amrich.
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Access the transcript on the website here.
Our kids touch the lives of everyone around us, but especially our close family and friends. But we don’t always get to hear that perspective from the outside.
So on this episode of The Rare Life, we’ll finally get to hear from those close to us about what it was like to watch us endure trauma, explore parenthood with a medically complex child, and try to figure out the best ways to support us. Kassie Harbath, auntie of Sloan, a little girl with CHARGE syndrome, joins us to sort through all these complex feelings.
And, this episode is so well-timed, because we’re also starting our Family + Friends Fundraiser! Get more info on the fundraiser at https://therarelife.org/fundraiser.
Also, thanks to the many families and friends who have already donated and sponsored episodes, including the loved ones of Alyssa Nutile, mom of Gemma who has Pyruvate Dehydrogenase Complex Deficiency (PDCD). We couldn’t do it without you!
Links:
Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come!
Donate to the fundraiser here.
Hear the story episodes of the loved ones whose family and friends who shared today: Alyssa Ep 140, Libby Ep 95, Bek Ep 133, Marci Ep 114, Brianna Ep 105, Madhura Ep 117, Suzy Ep 124, Kari: Ep 123, Ep 10, and Ep 11.
Listen to Ep 146: The Dad Perspective.
Listen to Ep 104: How to Support the Parents of Disabled Children.
Read Show Up and Bring Coffee by Megan Amrich.
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Access the transcript on the website here.
Previous Episode
147: Sex + Disability Parenting | All the Ways It Takes a Hit + Ways to Reclaim It w/ Amanda Griffith-Atkins
If you feel like you’re missing out on sexual intimacy in your life since entering your medically complex or disability parenting journey, you are not alone! We took a poll on Instagram and 90% of respondents said that their sex life had been impacted by medically complex life.
The reasons for this impact are endless: no time, no energy, no space, no emotional bandwidth, and the list goes on. So in this episode, we’re diving into specific thoughts and struggles from this incredible Rare Life community on the state of sexual intimacy in their lives.
Amanda Griffith-Atkins is once again here to help us sort through the conflicting feelings and causes behind these sex struggles, and she also shares several tips for reclaiming your sex life after disability parenting. This spicy episode is one that soooo many of us can relate to. Don’t miss it!
Links:
Visit Esther Perel’s website.
Learn more about sensate focus here.
Listen to Ep 99 on Family Planning.
Listen to Ep 131 on Chronic Stress.
Listen to Ep 138 on Therapy 101.
Follow Amanda on Instagram @amanda.griffith.atkins.
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Next Episode
Mini Episode: An Exciting Update for Our Family and Friends Fundraiser!
Less than a week into our Family and Friends fundraiser, and we have some super exciting news to share!
If you haven’t joined in on this fundraiser yet, we’ve got a list of ways you can get involved, plus some helpful tips to make it all a little easier!
Get more info at https://therarelife.org/fundraiser.
Thank you so much, friends!
Links:
Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
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