The Rare Life

Season 12 is coming to a close, and it’s been a season of big shifts. With Alyssa stepping in to host every episode and Madeline handling more behind-the-scenes projects, the podcast sounded a little different, but still hit all the same emotional notes. We also covered some especially heavy community topics, from family planning to marriage to familial rejection, which shaped the tone of the season in a really meaningful way.In this finale episode, we’re sharing a quick look behind the scenes of what Season 12 was actually like for us, plus a full recap of the season through all the intro clips. We’re also playing three listener takeaways, where Cary, Meghan, and Michelle share the episodes that resonated with them most this season.And finally, we’re giving you a little peek at Season 13 on the topic of our children’s disabilities, including long-requested topics like the NICU experience and how moms and dads are taken seriously (or not) in medical settings.Thank you for listening, supporting Sticker Club, and being part of this community. We can’t wait to be back with you in January.Links:Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups!Follow us on Instagram @the_rare_life!Donateto the podcast or Contactme about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.And if you love this podcast, please leave usa rating or review in your favorite podcast app! 

When a family member rejects your disabled or medically complex child, whether through subtle distancing or outright exclusion, it creates a kind of hurt that’s difficult to shake. In this episode, Madeline and Alyssa talk through the many ways that rejection shows up in families: minimizing your child’s needs, ignoring their diagnosis, designing gatherings your family can’t access, ghosting you because emotionally engaging is too hard, or outright excluding or belittling your child.Drawing from hundreds of community responses, we explore the emotional impact of these experiences—the isolation, the grief, the disappointment, and the shift in how we see these family bonds once these hurtful patterns emerge. We also touch on the clarity that can come from moments like this: boundaries that become necessary, expectations that change, and the people who rise to the occasion when others don’t.If you’ve ever felt this kind of hurt from the people closest to you, we hope you feel seen and understood after this episode.And a big thanks to our sponsor for this episode, the makers of the incredible documentary, The Zebra & The Bear!Links:Watch The Zebra & The Bear (coming to streaming platforms the day after Thanksgiving!)Fill out our contact form to join upcoming discussion groups!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.And if you love this podcast, please leave us a rating or review in your favorite podcast app.

Today’s episode is a quick moment to pause and say thank you. Your messages about feeling understood, less isolated, and more connected remind us why TRL exists in the first place. Hearing how this podcast fits into your NICU nights, med routines, or car rides means more than we can say.Sticker Club is also open for a few more days, and it’s one of the reasons we can keep making episodes like this. If you want to support the work and grab this year’s sticker designs, now’s the time. It truly helps keep this community running.Links:Join Sticker Club! Support The Rare Life and get a thankyou sticker (or four!)Follow Amanda onInstagram.Follow me on Instagram. Follow the Facebook page. Join the Facebook group Parents ofChildren with Rare Conditions. And if you love this podcast, please leave us a rating or review in yourfavorite podcast app!

When you have a child with a disability or other medical complexity, the holidays can feel like a minefield, as trauma triggers, anxiety, and grief for what we wish the holidays could have been for our families lurk around every corner.And on top of that, having to manage schedules, special diets, gift expectations, and uncomfortable commentary from friends and family can be emotionally and physically draining. The season often leaves parents of disabled children feeling left out, over-worked –and occasionally– like the celebrations might just be more trouble than they’re worth.In today’s episode, Amanda Griffith-Atkins and I discuss listener feedback and contributions about how complicated the holiday season feels for parents of disabled children, suggestions for how to make the holiday season feel just a little bit more manageable, and how adjusting our expectations has made a big difference for each of our families.And a big thanks to our sponsor for this episode, the makers of the incredible documentary, The Zebra & The Bear!Links:Watch The Zebra & The Bear (coming to streaming platforms the day after Thanksgiving!)Join Sticker Club! Support The Rare Life and get a thank you sticker (or four!)Follow Amanda on Instagram.Follow me on Instagram.Follow the Facebook page.Join the Facebook group Parents of Children with Rare Conditions.And if you love this podcast, please leave us a rating or review in your favorite podcast app!

For medically complex families, relationships with ourchildren’s medical teams are anything but simple. In this episode, Madeline and Alyssa dig into what makesthem so emotionally loaded: the power imbalance, the fear of being dismissed,the exhaustion of coordinating between specialists, and the pressure to keepeveryone “on your side.”We also talk about the moments that build trust — and theones that completely break it — plus what it feels like to train providers onrare diseases and advocate in systems that weren’t built for kids like ours.If you’ve ever struggled with the emotional complexity ofthese relationships, this conversation will help you feel understood and lessalone. Links:JoinSticker Club!Support The Rare Life and get a thank you sticker (or four!)Listento Ep 140: Alyssa’s Story.Listento Ep. 67: What Your Child’s Doctors WantYou to Know, But Don’t Tell You.Fill out our contact form to joinupcoming discussion groups!Follow us on Instagram @the_rare_life!Donateto the podcast or Contactme about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.Access the website here. And if you love this podcast, please leave usa rating or review in your favorite podcast app