The Rare Life podcast

The Rare Life

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192: Season 11 Finale | Poolside Chats with Texas ECI, Production Chaos, + Summer Mini Eps w/ Alyssa Nutile 40:36

11일 전40:36

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40:36

Season 11 is coming to a close, and it’s been one of our most emotional seasons yet. From intense behind-the-scenes chaos to topics that pushed the boundaries of what we’ve covered before—this season stretched us in all the right ways. In this finale episode, I’m joined again by Alyssa to reflect on what made this season both overwhelming and meaningful, from grief and seizures to politics and prenatal diagnoses. We’re also sharing a powerful listener testimonial from Michelle, who describes how her favorite episode from the season helped her feel validated and seen. And of course, we’re giving you a little peek at what’s ahead, including our summer mini episodes (with some solo episodes from Alyssa!), our upcoming merch fundraiser, and a big announcement coming with the Season 12 kickoff. Thanks for listening, for sharing, and for being part of this community. Whether this was your first season or your eleventh, we’re so glad you’re here ❤️ Links: Join The Rare Life newsletter and never miss an update! 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 . 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!…

The Rare Life

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191: Abortion + Parents of Disabled Kids w/ Alyssa Nutile 51:24

18일 전51:24

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51:24

No one expects to be here. But many of us are. In this episode, Alyssa Nutile and I open up a raw and rarely discussed topic: abortion after a prenatal diagnosis. We talk about how these decisions are shaped by love, by fear, by systemic failures, and by the weight of what it means to bring a child into the world when you know what they might face. We also explore what it means to carry both love and grief into that decision-making space and why so many parents are left feeling like there was never really a choice at all. It’s a heavy conversation. And it’s also a deeply human one. If you’ve been there, are there, or just want to understand this conversation better, this episode is for you. Links: Hear Alyssa’s other episodes: 187: Do You Miss Who You Were? BONUS: The Political Climate, 180: Does it get easier?, 179: Exhaustion, 174: Silencing, 171: Financial Strain , 170: Hospitalizations, 140: Alyssa’s Story , 125: Travel w/ Disabled Kids Join The Rare Life newsletter and never miss an update! Fill out our contact form to join upcoming discussion groups! Follow Alyssa at @caffeinated_caregivers! 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 . 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!…

The Rare Life

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190: Colleen’s Story | Epilepsy, Brain Surgery, + Rage Hiking 39:04

25일 전39:04

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39:04

Sometimes the only place big enough for the weight you’re carrying is the side of a mountain. That’s where Colleen—and dozens of other moms—learned how to let it out. In this episode, Colleen tells the story of her son Owen’s explosive onset epilepsy, her family's long search for answers, and the brain surgery that changed everything. She opens up about the loneliness of being undiagnosed, the emotional whiplash of unexpected good news, and the identity shift that comes with raising a child with complex needs. We also talk about how Electric Love retreats came to be and why sometimes the most healing thing you can do is a tough hike with people who get it. Also, a big thanks to Kate Farms for sponsoring this important episode! Links: Learn more about the many products Kate Farms offers forour formula and tube-fed kids! Learn more about Electric Love Retreats! Listen to Ep 183on Epilepsy with Hailey Adkisson. Follow Electric Love on Instagram @electric_love_retreats ! Follow Colleen on Instagram @raising_owen! Follow us on Instagram @the_rare_life ! Join The Rare Life newsletter and never miss an update! Fill out our contact form to joinupcoming discussion groups! Donate to the podcast or Contact me about sponsoring an episode. Follow the Facebook page . Access the transcript on the website here . And if you love this podcast, pleaseleave us a rating or review in your favorite podcast app!…

The Rare Life

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189: Grief in Disability Parenting | What it is, Why It’s There, + How to Process It w/ Amanda Griffith-Atkins 55:35

5 weeks 전55:35

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55:35

Grief around our children’s disabilities can take many forms. Some of us are grieving the life we thought we’d have with our child that looks so very different now. Others of us are grieving the very real possibility of losing them too soon. In this episode, therapist and fellow disability parent Amanda Griffith-Atkins joins me to talk about the complicated grief that comes with raising a disabled or medically complex child. We explore how this grief can morph and change, how it shows up in the quiet, ordinary moments, and how deeply human it is to wish things were easier —not because our children aren’t loved, but because they so deeply are. We also talk about why shame so often gets tangled up in these emotions, and what it looks like to let yourself feel without guilt. Also, a big thanks to Kate Farms for sponsoring this important episode! Links Learn more about the many products Kate Farms offers for our formula and tube-fed kids! Follow Amanda on Instagram @amanda.griffith.atkins ! Follow us on Instagram @the_rare_life ! Join The Rare Life newsletter and never miss an update! Fill out our contact form to join upcoming discussion groups! Donate to the podcast or Contact me about sponsoring an episode. Follow the Facebook page . Listen to previous episodes with Amanda: Ep 182 on Hobbies Ep 171 on Financial Strain Ep 159 on Sharing the Mental Load Ep 156 on Getting a Divorce Ep 153 on Hurtful Things Loved Ones Say Ep 147 on Sex and Disability Parenting Ep 142 on If My Disabled Child Outlives Me Ep 135 on Career and Family Roles Ep 132 on Self-Care Ep 131 on Chronic Stress Ep 130 on Anticipatory Grief Ep 99 on Family Planning Ep 85 on Parental Identity Ep 81 on Health Anxiety & our holiday season eps: Being Hospitalized During Holidays - Isolating at Home During Holidays & Why Holidays Can Suck.…

The Rare Life

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Mini-episode: Why We Are Delaying Our Next Few Episodes w/ Alyssa Nutile 21:35

6 weeks 전21:35

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21:35

For the first time in The Rare Life history... we need a little extra time to work on the next few episodes. Not because we haven’t been preparing and planning, but because some current events have thrown a wrench into the works. In this episode, Madeline and Alyssa talk generally about some of the recent events that have come up, how the community has been feeling about it, what it says about the world we’re living in right now, and why some of the upcoming topics needed just a little more time and context before they go out into the world. Join us for this quick mini-episode and check back next week for your regularly scheduled content! Links Join The Rare Life newsletter and never miss an update! 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 .…

The Rare Life

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188: Belief Systems + Ways They’re Affected by Disability Parenting w/ Ali, Bethany, Melissa, and Rachel 1:11:18

7 weeks 전1:11:18

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1:11:18

When you’re the parent of a medically complex or disabled child, the experience touches every aspect of our life – including our faith, often in unique and surprising ways. Today, I’m sharing a vulnerable and tender episode, where I interviewed four different women, each coming to the table with their own different spiritual backgrounds, to share how their faith has changed since having a child with a medical complexity. Ali Miller, Rachel Alves, Melissa Kellylove, and Bethany Mikulis all share their unique experiences – from faith that strengthened, faith that changed, faith that diminished, and faith that never really existed at all. This episode has something for absolutely everyone, no matter your religious or spiritual background, and I’m so proud of how open and respectful each of these women were as they shared their stories. This is one episode you can’t miss! Also, a big thanks to Kate Farms for sponsoring this important episode! Links Learn more about the many products Kate Farms offers for our formula and tube-fed kids! Listen to Episode 83 Part 1 & Episode 83 Part 2 to hear An Evolution in Faith with Kimberly Arnold. Follow Ali Miller , Rachel Alves , Melissa Kellylove , and Bethany Mikulis on Instagram! Follow us on Instagram @the_rare_life ! Join The Rare Life newsletter and never miss an update! Fill out our contact form to join upcoming discussion groups! Donate to the podcast or Contact me about sponsoring an episode. Follow the Facebook page .…

The Rare Life

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187: Do You Miss Who You Used to Be Prior To Disability Parenting? w/ Alyssa Nutile 1:05:01

8 weeks 전1:05:01

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1:05:01

For a lot of us, the answer isn’t simple. You can miss your lighter, less-traumatized self and feel proud of who you’ve become. That’s the tension so many of us sit in as medical parents: grieving the carefree, well-rested version of ourselves while also seeing strength, resilience, and depth we didn’t know we had. In this episode, I’m joined by Alyssa Nutile to unpack the big, messy feelings that come with identity loss, personality shifts, and how we change when our child’s life is on the line, plus the unexpected ways we’ve grown and adapted. Links: Hear Alyssa’s other episodes: 180: Does it get easier?, 179: Exhaustion, 174: Silencing, 171: Financial Strain , 170: Hospitalizations, 140: Alyssa’s Story , 125: Travel w/ Disabled Kids Fill out our contact form to join upcoming discussion groups! Follow Alyssa at @caffeinated_caregivers! 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 . 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!…

The Rare Life

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186: Leah’s Story | Faith, Nurturing Sibling Relationships, + NICU Boxes 59:12

9 weeks 전59:12

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59:12

When Leah Crum gave birth to her daughter Camilla, she had no idea she was about to be launched into a world of medical unknowns, an undiagnosed rare condition, and 118 days in the NICU. In this episode, Leah talks about the emotional whiplash of life in the NICU, the slow heartbreak of delayed diagnoses, and the grief that comes with being told your child may not live to adulthood. We also talk about what it means to create an inclusive family, not just for Camilla, but for her neurotypical little sister, Paisley. From rude comments at the grocery store to intentionally planning joy-filled days, Leah opens up about what’s changed in her parenting, her worldview, and her faith. This episode is about curveballs, sibling dynamics, and sometimes, saying “ew” to rude strangers. It’s a funny, real, and tender one. And a huge thank you to our sponsor, MOOG Medical, for making this episode possible! Links: If your child uses an Infinity pump, you can call the Moog Medical 24/7 Clinical Helpline for any assistance you need at 1-800-970-2337 or moogmedical.com/contact. Fill out our contact form to join upcoming discussion groups! Follow Leah at @leahcrum_! 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 . 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!…

The Rare Life

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BONUS: The Current Political Climate + How Disability Parents Feel About It w/ Alyssa Nutile 54:06

10 weeks 전54:06

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54:06

When the systems your child depends on are under threat, it doesn’t feel political—it feels personal. In this episode, Madeline and Alyssa unpack the deep unfairness of having to constantly justify your child’s worth while watching essential supports unravel in real time. They also discuss the fury that bubbles up when people call your fear “political,” the heartbreak of realizing who around you doesn’t care, and the exhaustion of never being allowed to rest. This isn’t about debates or party lines—it’s about fear, frustration, and the deep grief of feeling unsupported by those in your community. If you’re feeling angry, bitter, or broken-hearted, this episode is for you. Links: Follow @margot_thebrave for more information on the situation at NIH. Listen to Ep 81: Health Anxiety. Listen to Ep 185: Medical Parent Trauma. Hear Alyssa’s other episodes: 180: Does it get easier?, 179: Exhaustion, 174: Silencing, 171: Financial Strain , 170: Hospitalizations, 140: Alyssa’s Story , 125: Travel w/ Disabled Kids Fill out our contact form to join upcoming discussion groups! Follow Alyssa at @caffeinated_caregivers! 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 . 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!…

The Rare Life

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185: Medical Parent Trauma | Dealing with Triggers + Ongoing Trauma w/ Rosey Schaefermeyer, LCSW 49:15

11 weeks 전49:15

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49:15

There are certain moments that never leave you—the sight of your child turning blue, the smell of hospital-grade hand sanitizer, the feeling of helplessness as doctors take over. Medical trauma doesn’t just happen to our kids. It happens to us too. In this episode, therapist Rosey Schaefermeyer joins us for a deep dive into how medical trauma shapes parents, how it lingers in our bodies and minds, and why it’s so easy to feel stuck in survival mode. Rosey shares how trauma builds on itself, why some moments become impossible to shake, and what parents can do to move forward while still being present for their children. If you’ve ever wondered why a single smell or sound can send you spiraling and how you can break this harrowing cycle, this episode is for you. Links: Get a copy of Anchored by Deb Dana. Find a trauma-informed therapist with Amanda Griffith-Atkins' therapist directory. Listen to Ep 25 on EMDR Therapy with Rosey. Listen to Ep 138 on how to find a trauma-informed therapist. 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 . 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!…

The Rare Life

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184: Rachel’s Story | Widowed During Pregnancy, Misdiagnoses, + Sibling Dynamics 34:29

12 weeks 전34:29

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34:29

At 28 weeks pregnant with her third child, Rachel experienced the unimaginable—losing her husband in a sudden tragedy. What followed was a whirlwind of grief, survival mode, and a cross-country move while still carrying her son, Wells. But it wasn’t until after his birth that another challenge emerged: developmental delays, medical concerns, and the beginning of a diagnostic odyssey. In this episode, Rachel shares her family’s long road to a rare diagnosis, the complicated emotions of realizing your child’s future won’t look like you imagined, and the unique challenges of raising a disabled child as a solo parent. She shares the unique challenges of raising a hyper-social child who struggles with deep friendships and the sibling dynamics that come with disability. If you’ve ever found yourself grieving what could have been while still trying to embrace what is , Rachel’s story will resonate. Also, huge thank you to our sponsor Functional Formularies ! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us! Links: Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child! Fill out our contact form to join upcoming discussion groups! Follow Rachel on Instagram @rachel_horne ! Follow the JdVS Foundation on Instagram @jdvs_foundation ! 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 . 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!…

The Rare Life

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183: Epilepsy | Unpredictability + Emotional Toll it Takes on Parents w/ Hailey Adkisson 1:11:21

13 weeks 전1:11:21

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1:11:21

Imagine living on high alert, every second of every day. That’s life with severe, uncontrolled epilepsy. You’re always watching, always listening, always bracing for the next seizure. And when they happen multiple times a day, there’s no break. No way to ever fully relax. In Ep 183 of The Rare Life , Hailey Atkison shares the raw reality of parenting a child with severe, refractory epilepsy. She talks about the emotional toll of watching her daughter, Juniper, seize multiple times a day, the way it impacts her entire family—including her sons—and the impossible task of balancing hope with the knowledge that nothing they’ve tried has truly worked. She also dives into the impossible choices—when to push for new treatments, when to let go, and how she’s learning to focus on the good moments in between. Because when epilepsy takes so much, holding onto joy becomes an act of defiance. And a huge thank you to our sponsor, MOOG Medical, for making this episode possible! Links: If your child uses an Infinity pump, you can call the Moog Medical 24/7 Clinical Helpline for any assistance you need at 1-800-970-2337 or moogmedical.com/contact. Listen to Hailey’s previous episodes: 174 on silencing parents and 117 on traumaversaries. Listen to Hailey’s husband Derek on 146: The Dad episode. Get Hailey’s book, What is Epilepsy? Fill out our contact form to join upcoming discussion groups! Follow Hailey at @growing_juniper! 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 . 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!…

The Rare Life

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182: Hobbies for Disability Parents | Why We Need Them + How to Squeeze Them In w/ Amanda Griffith-Atkins 48:35

14 weeks 전48:35

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48:35

When your life revolves around medical schedules, appointments, and constant caregiving, hobbies can feel a little unnecessary. Where do we find the time? The energy? The mental bandwidth? It’s easy to fall into the trap of thinking that any time spent on ourselves is selfish. But for many of us, finding ways to adapt our hobbies to fit into our medicalized life can be game-changing. In Ep 182 of The Rare Life, Amanda Griffith-Atkins joins me to dive into all things hobbies: the loss of identity when we lose them, the guilt and grief that can come with doing something “just for you,” and how even the smallest hobbies can become a lifeline. Plus, our 2nd Annual Friends and Family Fundraiser is live! We’re not asking for your funds, only that you share this fundraiser with your friends, family, and community that may want to contribute. Thank you so much! We couldn’t do this without you! Links: Help us continue The Rare Life by asking your community to donate to our Friends and Family Fundraiser between Feb 14-Feb 28! Fill out our contact form to join upcoming discussion groups! Follow Amanda at @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 . 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!…

The Rare Life

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181: Kait’s Story | Fertility Struggles, A Surviving Twin, + “What Could Have Been” 44:28

15 weeks 전44:28

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44:28

When Kait Parrish found out she was pregnant with twins, she imagined matching outfits, sibling giggles, and the life she had always dreamed of. Instead, at 24 weeks, she gave birth to two fragile babies fighting for survival in the NICU. Then, two weeks later, she lost one of them. In this raw and deeply personal episode, Kait shares the heartbreak of losing Avery, the terrifying rollercoaster of Addie’s early medical battles, and how her perspective on parenting shifted when she became pregnant again. We also talk about the complexity of raising a medically complex child alongside a non-disabled sibling, and the emotions that come with it all. From NICU trauma to navigating life after loss, Kait’s story is one of resilience, heartbreak, and unexpected love. If you’ve ever felt like your parenting journey didn’t go as planned, you’ll find so much to relate to here. Plus, our 2nd Annual Friends and Family Fundraiser is live! We’re not asking for your funds, only that you share this fundraiser with your friends, family, and community that may want to contribute. Thank you so much! We couldn’t do this without you! And a big thank you to MOOG , our sponsor for this episode! Links: Help us continue The Rare Life by asking your community to donate to our Friends and Family Fundraiser between Feb 14-Feb 28! Visit MOOG’s website to see the many ways they support families like ours! Fill out our contact form to join upcoming discussion groups! Follow Alyssa and Erica at @caffeinated_caregivers! 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 . 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!…

The Rare Life

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180: Does Disability Parenting Ever Get Easier? Survival Mode, Burnout Mode, and Beyond w/ Erica Stearns and Alyssa Nutile 59:30

16 weeks 전59:30

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59:30

The age old question: Does this life ever get easier? And if so, when? Just as you might expect, the answer isn’t quite cut and dry, but in this episode, I’m joined by Erica Stearns and Alyssa Nutile to sort through this complex question. Using their Caregiver Continuum framework, they offer a way for you to orient yourself and gain footing as a disability parent, even if life doesn’t always feel like it’s getting easier. If you’ve been feeling lost and overwhelmed in this parenting journey, this episode is here to give you an anchor point. And on February 14, we’re launching our 2nd Annual Friends and Family Fundraiser! We understand that this community is overworked and under-resourced, so we’re not asking for your funds, only that you share this fundraiser with your friends, family, and community that may want to contribute. Thank you so much! We couldn’t do this without you! Links: Ask your community to donate to our Friends and Family Fundraiser between Feb 14-Feb 28! Or ask them to donate via Venmo @the_rare_life! https://venmo.com/code?user_id=4224512098830319954&created=1739551472.105737&printed=1 Listen to Ep 170 all about hospitalizations. Listen to Ep 54 on Erica’s perspective as a disabled adult. Hear Alyssa’s other episodes: 179: Exhaustion, 171: Financial Strain , 140: Alyssa’s Story , 125: Travel w/ Disabled Kids Read more about the Caregiver Continuum. Fill out our contact form to join upcoming discussion groups! Follow Alyssa and Erica at @caffeinated_caregivers! 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 . 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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The Rare Life

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