The Holidays + Why They Can Be Tough for Disability Parents w/ Amanda Griffith-Atkins

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 

For many of us, this year has felt so heavy, from loss inthe community, to terrifying policy changes and the stress of uncertainty, to another emotional reality many didn’t expect: feeling disconnected from the people who love us but don’t understand our lives.In this episode, we talk about the weight of this year,the grief and instability running through our community, and the complicated task of navigating family and friendships in a politically charged moment. From boundaries to distancing to the exhaustion of tryingto explain ourselves, we share how parents are protecting the emotional well-being of themselves and their families, especially heading into the holidays.And a big thanks to our sponsor for this episode, themakers of the incredible documentary, The Zebra & The Bear Links:Watch The Zebra & The Bear (coming tostreaming platforms the day after Thanksgiving!)Listento the Current Political Climate + HowDisability Parents Feel About It.Listento Medicaid Cuts | The Implications for OurFamilies and What We Can Do About It.Listento Ep 154: Deaths in the Community.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.Access the transcript on the website here. And if you love this podcast, please leave usa rating or review in your favorite podcast app 

What do you do when your baby is seizing and the people who are supposed to help you tell you that you’re overreacting?For Abbey, the fight to be taken seriously began early, and it shaped everything that came next. Her daughter Avery’s rare metabolic disorder (ADSL Deficiency) brought hospital stays, impossible medical decisions, and a long process of learninghow to live with uncertainty.In this episode, Abbey shares how she became her daughter’s advocate long before she felt ready, what it has meant to reimagine milestones through a different lens, and howshe’s built community when support is scarce. She also talks about the emotional weight siblings carry, and the ongoing, complicated role of faith in Avery’s care.If you’re learning to acknowledge the hard while still making room for joy, this episode is one you can’t miss. Links:Join The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups!Follow Abbey on Instagram @abbeybenj!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 transcript on the website here. And if you love this podcast, please leave usa rating or review in your favorite podcast app 

Your child’s diagnosis can reshape everything, marriages included. The same partnership that once felt effortless can become consumed by care plans, schedules, and unspoken grief. Over time, love turns into teamwork—and sometimes, survival.  In this conversation with Amanda Griffith-Atkins, we unpack the real challenges couples face when parenting through medical complexity: the imbalance of the mental load, the grief that seeps into communication, and the long road back to connection. Amanda offers practical, compassionate guidance for finding your way back to each other, even if right now, your marriage feels like it’s in survival mode.If you’ve ever wondered what “making it work” really looks like when life is this hard, this conversation offers validation, compassion, and a path back to understanding.Links:Get a copy of How to Handle More Than You Can Handle by Amanda Griffith-Atkins.Listen to Ep 156: Should I Get a Divorce?Listen to Ep 180: Does It Get Easier?Listen to Ep 159: Sharing the Mental Load.Listen to Ep 147: Sexual Intimacy.Listen to Ep 146: The Dad Episode.Listen to Ep 182: Hobbies.Get a copy of Fair Play by Eve Rodsky.Join The Rare Life newsletter and never miss an update!Fill out our contact form to join upcoming discussion groups!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.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!

When your days revolve around medical routines, sleepless nights, and endless caregiving, marriage can start to feel more like project management than partnership. In this episode, Madeline and Alyssa unpack all the ways that marriage is impacted amidst  medical and disability parenting—the disconnection, resentment, and chronic stress that test relationships, and the deepened understanding, teamwork, and shared strength that can come from walking through it together.Whether you think your marriage has struggled, beenstrengthened, or maybe experienced a little bit of both, this episode has something you can relate to.Links:Listen to Ep156: Should I Get a Divorce?Listento Ep 187: Do you Miss Who You Used to Be?Listento Ep 159: Sharing the Mental Load.Listento Ep 147: Sexual Intimacy.Listento Ep 171: Financial Strain.Listento Ep 99: Family Planning.Listento Ep 146: The Dad Episode.Listento Ep 139: In-Home Nursing.Listento Ep 135: Careers.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.Access the transcript on the website here. And if you love this podcast, please leave usa rating or review in your favorite podcast app

From the moment her daughter was born, Roya had an inkling that something was different. What followed was a long year of uncertainty, endless medical tests, and finally anofficial diagnosis of Schaaf-Yang syndrome... all on top of learning a new language of care no parent expects to need.In this episode, Roya shares the disorienting early days of her daughter’s diagnosis journey, what tending to her own mental health looked like in the midst of caregiving, and how she eventually found purpose in advocacy and community. From becoming her daughter’s “historian” to learning that even the strongest caregivers break down, Roya’s story captures so many of the aspects that shape the lives of disability parents.If you’ve ever had to rebuild yourself in the middle of medical chaos, this conversation will hit home. Links: Listen to Ep. 180: Does Disability Parenting Ever GetEasier?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!Connect with Roya on Instagram @roya.malaekehDonate to the podcast or Contactme about sponsoring an episode.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 usa rating or review in your favorite podcast app