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169: Crunchy Medical Parenthood w/ Suzi Boubion and Julianna Morasse
Manage episode 443338785 series 3248851
Content provided by Madeline Cheney. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Madeline Cheney or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://player.fm/legal.
Imagine with us: You have a shelf full of tinctures, a book of natural remedies, and plan to use holistic medicine to care for your family as much as possible... and then you have a medically complex child who requires intense medical intervention, specialist appointments, and a whole host of pharmaceuticals.
This is where Suzi Boubion and Julianna Morasse found themselves shortly after having their medically complex children, and the experience was just as jarring as it sounds.
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In Ep 169 of The Rare Life, Suzi and Julianna describe the shock of being self-described “crunchy moms” who found themselves abruptly living a life of pharmacies, hospital visits, and medical procedures, while navigating the harsh divide between those two worlds and reevaluating some of their long-held beliefs around medicine.
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We also cover what finding community looks like for them now, how they are each working through their trust issues with the medical system, and how they’ve found strength as advocates for their children.
⠀⠀⠀⠀⠀⠀⠀⠀⠀
This is one episode you cannot miss!
Links:
Visit the Functional Formularies website to learn how you can get real food blends for your tube fed child!
Get tickets to a special screening of The Zebra and The Bear just for The Rare Life listeners!
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Follow Suzi on Instagram @oliversodyssey1!
Follow Julianna on Instagram @howlinghive!
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!
250 episodes
ShareManage episode 443338785 series 3248851
Content provided by Madeline Cheney. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Madeline Cheney or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://player.fm/legal.
Imagine with us: You have a shelf full of tinctures, a book of natural remedies, and plan to use holistic medicine to care for your family as much as possible... and then you have a medically complex child who requires intense medical intervention, specialist appointments, and a whole host of pharmaceuticals.
This is where Suzi Boubion and Julianna Morasse found themselves shortly after having their medically complex children, and the experience was just as jarring as it sounds.
⠀⠀⠀⠀⠀⠀⠀⠀⠀
In Ep 169 of The Rare Life, Suzi and Julianna describe the shock of being self-described “crunchy moms” who found themselves abruptly living a life of pharmacies, hospital visits, and medical procedures, while navigating the harsh divide between those two worlds and reevaluating some of their long-held beliefs around medicine.
⠀⠀⠀⠀⠀⠀⠀⠀⠀
We also cover what finding community looks like for them now, how they are each working through their trust issues with the medical system, and how they’ve found strength as advocates for their children.
⠀⠀⠀⠀⠀⠀⠀⠀⠀
This is one episode you cannot miss!
Links:
Visit the Functional Formularies website to learn how you can get real food blends for your tube fed child!
Get tickets to a special screening of The Zebra and The Bear just for The Rare Life listeners!
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Follow Suzi on Instagram @oliversodyssey1!
Follow Julianna on Instagram @howlinghive!
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!
250 episodes
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The Rare Life
1 192: Season 11 Finale | Poolside Chats with Texas ECI, Production Chaos, + Summer Mini Eps w/ Alyssa Nutile 40:36
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Play Later Play Later Lists Like LikedSeason 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!…
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The Rare Life
1 191: Abortion + Parents of Disabled Kids w/ Alyssa Nutile 51:24
51:24 Play Later Play Later Lists Like Liked51:24
Play Later Play Later Lists Like LikedNo 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!…
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The Rare Life
1 190: Colleen’s Story | Epilepsy, Brain Surgery, + Rage Hiking 39:04
39:04 Play Later Play Later Lists Like Liked39:04
Play Later Play Later Lists Like LikedSometimes 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!…
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The Rare Life
1 189: Grief in Disability Parenting | What it is, Why It’s There, + How to Process It w/ Amanda Griffith-Atkins 55:35
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Play Later Play Later Lists Like LikedGrief 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.…
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The Rare Life
1 Mini-episode: Why We Are Delaying Our Next Few Episodes w/ Alyssa Nutile 21:35
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Play Later Play Later Lists Like LikedFor 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 .…
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The Rare Life
1 188: Belief Systems + Ways They’re Affected by Disability Parenting w/ Ali, Bethany, Melissa, and Rachel 1:11:18
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Play Later Play Later Lists Like LikedWhen 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 .…
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The Rare Life
1 187: Do You Miss Who You Used to Be Prior To Disability Parenting? w/ Alyssa Nutile 1:05:01
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Play Later Play Later Lists Like LikedFor 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!…
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The Rare Life
1 186: Leah’s Story | Faith, Nurturing Sibling Relationships, + NICU Boxes 59:12
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Play Later Play Later Lists Like LikedWhen 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!…
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The Rare Life
1 BONUS: The Current Political Climate + How Disability Parents Feel About It w/ Alyssa Nutile 54:06
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Play Later Play Later Lists Like LikedWhen 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!…
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The Rare Life
1 185: Medical Parent Trauma | Dealing with Triggers + Ongoing Trauma w/ Rosey Schaefermeyer, LCSW 49:15
49:15 Play Later Play Later Lists Like Liked49:15
Play Later Play Later Lists Like LikedThere 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!…
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The Rare Life
1 184: Rachel’s Story | Widowed During Pregnancy, Misdiagnoses, + Sibling Dynamics 34:29
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Play Later Play Later Lists Like LikedAt 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!…
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The Rare Life
1 183: Epilepsy | Unpredictability + Emotional Toll it Takes on Parents w/ Hailey Adkisson 1:11:21
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Play Later Play Later Lists Like LikedImagine 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!…
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The Rare Life
1 182: Hobbies for Disability Parents | Why We Need Them + How to Squeeze Them In w/ Amanda Griffith-Atkins 48:35
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Play Later Play Later Lists Like LikedWhen 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!…
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The Rare Life
1 181: Kait’s Story | Fertility Struggles, A Surviving Twin, + “What Could Have Been” 44:28
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Play Later Play Later Lists Like LikedWhen 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!…
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The Rare Life
1 180: Does Disability Parenting Ever Get Easier? Survival Mode, Burnout Mode, and Beyond w/ Erica Stearns and Alyssa Nutile 59:30
59:30 Play Later Play Later Lists Like Liked59:30
Play Later Play Later Lists Like LikedThe 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
1 179: The Exhaustion of Being a Disability Parent w/ Alyssa Nutile 1:09:23
1:09:23 Play Later Play Later Lists Like Liked1:09:23
Play Later Play Later Lists Like LikedThe exhaustion that comes with disability parenting isn’t just about sleep deprivation. It’s everything else too: the mental exhaustion of managing a child’s entire medical life. The weight of being the only one who knows all the details. The grief. The fear. The constant pressure of doing everything right with so little support. And that’s just scratching the surface. In this episode of The Rare Life, I’m joined by our producer, Alyssa Nutile, to share responses from the community about all the things contributing to our collective exhaustion and why, some days, it does feel like too much for one person to carry. If you’ve ever wondered how you’ll keep going when you’re just so drained, you are not alone. This episode is for you. 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 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!…
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The Rare Life
1 178: Jessica Fein’s Story |Adoption, a Progressive Disease, + The Illusion of Control 56:47
56:47 Play Later Play Later Lists Like Liked56:47
Play Later Play Later Lists Like LikedWhen Jessica Fein’s daughter, Dalia, was diagnosed with a rare degenerative disease (MIRF syndrome) after a long diagnostic process, she was thrown into a world of medical uncertainty, impossible decisions, and the heartbreaking reality of watching Dalia’s abilities slowly fade. In this episode, Jessica shares her adoption story with Dalia, the ambiguous grief associated with her diagnosis, how her views on the control she has over her life have changed, and the unexpected ways she found beauty in the hardest moments. If you’ve ever fought to get answers, struggled to balance hope with heartbreak, or felt like you were carrying the weight of it all, this episode will feel deeply familiar. 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! Listen to Jessica’s podcast: I Don’t Know How You Do It. Read Breath Taking: A Memoir of Family, Dreams, and Broken Genes by Jessica Fein. Fill out our contact form to join upcoming discussion groups! Follow Jessica on Instagram @feinjessica! 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
1 177: Kicking Off Season 11 | Episode + Fundraiser Sneak Peeks w/ Alyssa Nutile 26:26
26:26 Play Later Play Later Lists Like Liked26:26
Play Later Play Later Lists Like LikedIt’s time to officially kick off Season 11! This season, we’re diving deep into how this life affects you—the parent. From mental health to medical trauma to grief, and even hobbies, this season is all about how the experience of parenting a medically complex or disabled child shapes our lives too. We’re also launching our second annual Friends and Family Fundraiser this season, running from 2/14-2/28. This fundraiser allows your friends, extended family, and broader support system to show up for you in a tangible way by supporting The Rare Life. And we are not asking this community of parents to financially support us directly. All you have to do is share! (And we’ve got some exciting incentives for you to get the word out!) As always, we’re closing out this episode with sneak peeks of the first four episodes of the season, and there are some juicy moments in just these little clips. We can’t wait to share them with you. This season is packed with tender, honest, and relatable conversations. We’re so grateful to share these moments with you. Let’s dive in! ⠀ Links: Fill out our contact form to join upcoming discussion groups! Follow Alyssa on Instagram @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
1 Holiday Mini 6: Find Your Community in TRL Discussion Groups 12:18
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Play Later Play Later Lists Like LikedBuilding connections can feel impossible when life is already overwhelming. That’s where The Rare Life discussion groups come in. In this episode, I’m pulling back the curtain on our discussion groups—virtual gatherings that feel more like a book club than anything else. You’ll hear from three amazing facilitators about the friendships, resources, and support they’ve found through this space. If you’ve been searching for a place where you can connect with other disability parents who just get it, this is your invitation. Links: Join The Rare Life newsletter and never miss an update! Listen to Ep 108 on navigating the holidays with Amanda Griffith Atkins. Listen to Ep 109 on isolating at home during the holidays with Amanda Griffith Atkins. Listen to Ep 110 on being inpatient during the holidays with Amanda Griffith Atkins. Fill out our contact form to join upcoming discussion groups! Follow Kara on Instagram @hear_me_rare ! 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
1 Holiday Mini 5: The New Year for Disability Parents 9:53
9:53 Play Later Play Later Lists Like Liked9:53
Play Later Play Later Lists Like LikedFor disability parents, the New Year doesn’t always mean lofty resolutions or big changes. It might mean survival mode, holding boundaries, or simply getting through the day. In this episode, I’m sharing your thoughts on New Year’s resolutions—why they’re hard, how they shift, and what really matters when life is unpredictable. From survival mode to tentative hope, this is a conversation about giving yourself grace. If the traditional “new year, new me” doesn’t fit your life, this one’s for you. Links: Join The Rare Life newsletter and never miss an update! Listen to Ep 108 on navigating the holidays with Amanda Griffith Atkins. Listen to Ep 109 on isolating at home during the holidays with Amanda Griffith Atkins. Listen to Ep 110 on being inpatient during the holidays with Amanda Griffith Atkins. Fill out our contact form to join upcoming discussion groups! Follow Kara on Instagram @hear_me_rare ! 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
1 Holiday Mini 4: 2024 for Medical Parents | Highs and Lows 19:20
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Play Later Play Later Lists Like LikedWhat if the hardest part of your year was also the one that shaped you the most? In this special mini-episode, I read submissions from the community that capture the resilience, heartache, and triumphs we’ve all experienced this year (including a few entries that count as both highs AND lows.) From the heartbreaking realities of denied services and exhausting diagnoses to the incredible wins of first smiles and newfound independence, it’s a powerful reminder that no matter how hard it gets, we’re never alone. Tune in for a dose of solidarity, and let’s close out 2024 together. Links: Join The Rare Life newsletter and never miss an update! Listen to Ep 108 on navigating the holidays with Amanda Griffith-Atkins. Listen to Ep 109 on isolating at home during the holidays with Amanda Griffith Atkins. Listen to Ep 110 on being inpatient during the holidays with Amanda Griffith Atkins. Fill out our contact form to join upcoming discussion groups! Follow Kara on Instagram @hear_me_rare ! 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
1 Holiday Mini 3: The Silent Suffering | A Poem Reading + Discussion w/ Kara Berasi 18:05
18:05 Play Later Play Later Lists Like Liked18:05
Play Later Play Later Lists Like LikedWhat if the hardest part of your journey was the part no one saw? The silent suffering that happens behind closed doors, in the dark hours of the night, when the mask comes off and the tears flow. In this mini-episode, I’m joined by Kara Berasi, who shares her powerful poem, The Silent Suffering . We talk about the emotional weight of caregiving, the exhaustion of advocacy, and the struggle to be honest about the pain. We also cover the way that sharing through art can allow the people who love us to get a glimpse into these often unseen parts of our lives. If you’ve ever felt like you’re carrying the weight of it all, alone, this one’s for you. Links: Join The Rare Life newsletter and never miss an update! Listen to Ep 108 on navigating the holidays with Amanda Griffith Atkins. Listen to Ep 109 on isolating at home during the holidays with Amanda Griffith Atkins. Listen to Ep 110 on being inpatient during the holidays with Amanda Griffith Atkins. Fill out our contact form to join upcoming discussion groups! Follow Kara on Instagram @hear_me_rare ! 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
1 Holiday Mini 2: Gift Giving Grief for Disability Parents w/ Amanda Griffith-Atkins 25:00
25:00 Play Later Play Later Lists Like Liked25:00
Play Later Play Later Lists Like LikedHolidays are supposed to be full of joy, right? But for disability parents, gift-giving can bring a whole mix of feelings: grief, frustration, and why did they buy this moments. Instead of magic, we’re juggling unconventional (or maybe not age-appropriate) toys for our kids, therapy equipment wrapped in bows, and family members who just don’t get it. In this episode, I’m replaying part of Ep 108 with Amanda Griffith-Atkins where we talk about the challenges of shopping for our disabled kids and managing those tricky expectations. We're diving into the heartbreak of gifts that miss the mark and the joy of gifts that actually make your kid light up (think Elmo toys and shiny balloons). If the holidays bring up all the complicated feels, this one’s for you. ⠀⠀⠀⠀⠀⠀ Links: Join The Rare Life newsletter and never miss an update! Listen to Ep 108 on navigating the holidays with Amanda Griffith Atkins. 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!…
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The Rare Life
1 Holiday Mini 1: Boredom, G-Tubes, + Chatterboxes | What We’re Deeply Grateful For Because of Disability Parenting 10:39
10:39 Play Later Play Later Lists Like Liked10:39
Play Later Play Later Lists Like LikedSo many parts of this life are difficult, traumatic, and honestly just unfair for us and our children... but there are bright spots and things we find ourselves grateful for, despite the hardship. So to prepare for this episode, we asked you about those things you’re most grateful for in this life, and boy, did you all deliver. You mentioned things big and small and oftentimes, things we’d have probably never considered before this life of disability parenting. And in this episode, we’re sharing them all, from the way moments with our disabled children feel so much more precious to just having the best parking. If you need a little feel-good episode to brighten your day, don’t miss this one! ⠀⠀⠀⠀⠀⠀⠀⠀⠀ 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!…
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The Rare Life
1 176: Season 10 Finale | A Spicy Season, Sticker Club Tallies, + What’s Coming Next w/ Alyssa Nutile 30:13
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Play Later Play Later Lists Like LikedSeason 10 is coming to a close, and it’s been a good one! While a little shorter than seasons in the past, we covered some big topics from hospitalizations to crunchy medical parenting to online bullying with some amazing stories mixed in. Outside of the podcast, we added two new board members, and we had our most successful round of Sticker Club yet! So to celebrate the end of this season, per tradition, we’re sharing a little recap of the season, plus audio from three listeners as they describe which episodes touched them the most from Season 10. And we’re sharing our most listened to episodes from this season as well. Finally, we’re giving you a look into what Season 11 has in store, and the mini episodes that we’re sharing in between seasons again. Thank you so much for being here and supporting The Rare Life for 10 seasons now! We would not be here without you ❤️ ⠀⠀⠀⠀⠀ Links: Join The Rare Life newsletter and never miss an update! Listen to The Rare Life Holiday episodes: Inpatient During the Holidays, Isolating at Home, & Why the Holidays Suck Sometimes. Get Jillian Arnold’s children’s book, Soaring Together. Fill out our contact form to join upcoming discussion groups! Follow Alyssa on Instagram @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
1 SC Mini #3 | The Last Day of Sticker Club & What It Takes to Make One Episode of The Rare Life with Alyssa Nutile 30:15
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Play Later Play Later Lists Like LikedIt’s our final Sticker Club mini episode, and today, Alyssa Nutile, producer and doer-of-all-the-things at The Rare Life, is here to break down what production looks like for each episode of the podcast, from start to finish. (It’s probably a lot more than you would think!) And for the sake of transparency, we’re also sharing our mission here at The Rare Life, why we only fundraise twice a year, and how we use those funds. If you’ve ever wanted to get a glimpse of how The Rare Life works behind the scenes, this episode is for you! And as always, if you want to learn more about how to support The Rare Life, get some awesome stickers as a thank you, and potentially win a book bundle, sign up for Sticker Club! Today is the last day! ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Links: Join the TRL Sticker Club and learn about our Book Bundle Giveaway to support the podcast for the coming season! 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!…
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The Rare Life
1 175: Our Children’s Medical Trauma w/ Katie Taylor, CCLS 1:04:41
1:04:41 Play Later Play Later Lists Like Liked1:04:41
Play Later Play Later Lists Like LikedWatching our children go through pain in a medical setting, even when we know it’s what is best for them, can be difficult for parents to navigate. We want to help, but sometimes it can be hard to know what is actually easing instead of compounding the trauma. Fortunately, there’s a specialty that focuses on this exact problem: enter the Child Life specialists. They’re here to help families provide as much comfort and as little trauma as possible for children in medical settings, including helping families advocate for comfort accommodations. In this episode, Katie Taylor of Child Life on Call is here to explain what exactly a child life specialist is, how they can assist families, and most importantly, the variety of ways that parents can help minimize the medical trauma that their children experience. If your child regularly interacts with the medical system, this is one episode you can’t miss. Links: Join Sticker Club so you can support The Rare Life all year long (and get some awesome stickers as a thank you!) Visit the ABLEnow website to learn how to open an account for your child! Join The Rare Life newsletter and never miss an update (including the moment when Sticker Club opens!) Fill out our contact form to join upcoming discussion groups! Get the SupportSpot App, where you can find the comfort positions mentioned in this app (plus a ton of other resources!) Download the Six Comfort Positions guide. Listen to Katie’s podcast Child Life on Call! Listen to Katie’s previous episode: Ep 47 on Siblings Follow Katie on Instagram @childlifeoncall ! 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
1 SC Mini #2 | Behind the Heart of a Listener and Supporter 22:59
22:59 Play Later Play Later Lists Like Liked22:59
Play Later Play Later Lists Like LikedSummary: On this special mini episode, we’re hearing from a long-time listener turned board member, Carolina! We got to chat about what led Carolina to The Rare Life, what The Rare Life has meant to her, how she helped plan this year’s Sticker Club as part of our fundraising committee, and how she’s helping us grow and reach new communities via a Spanish translation of the podcast! And as always, if you want to learn more about how to support The Rare Life, get some awesome stickers as a thank you, and potentially win this book bundle, sign up for Sticker Club! ⠀⠀⠀⠀⠀⠀ Links: Join the TRL Sticker Club and learn about our Book Bundle Giveaway to support the podcast for the coming season! 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!…
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The Rare Life
1 174: A Case Against Silencing Disability Parents on Social Media w/ Alyssa Nutile 1:40:25
1:40:25 Play Later Play Later Lists Like Liked1:40:25
Play Later Play Later Lists Like LikedWe all have stories to tell, and we all have a right to tell them... but on social media, sometimes it feels like we have to do it in a specific way. Because if we don't use the perfect words and the right framing, we risk a small but vocal cohort of other disability parents and disabled adults coming into our space, monitoring our content, and sometimes harassing us through comments and messages. And it goes without saying that this kind of behavior is not okay and can actually cause long-term harm for both parents and their medically complex and disabled children. In this episode, I’m joined by Alyssa Nutile share thoughts from Erica Stearns, Hailey Adkisson, and Suzi Boubion, as well as our own commentary, on why you’re allowed to share your story on your terms, the benefits of sharing, and the harm that comes with being silenced and isolated. We hope this empowering and nuanced episode will give you the confidence to share your experiences (if you so choose) and maybe make you think twice about the way you engage with your community on social media. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Links: Join Sticker Club so you can support The Rare Life all year long (and get some awesome stickers as a thank you!) Join The Rare Life newsletter and never miss an update (including the moment when Sticker Club opens!) Fill out our contact form to join upcoming discussion groups! Listen to Ep 155 with Aneesa. Follow Alyssa & Erica on Instagram at @caffeinated_caregivers ! Follow Hailey on Instagram @growing_juniper ! Follow Suzi on Instagram @oliversodyssey1 ! Follow us on Instagram @the_rare_life ! Erica’s Episodes: 54: Disabled Adult Perspective Hailey’s Episodes: 117: Traumaversaries…
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The Rare Life
1 SC Mini #1 | Disability Parenting Book Recommendations w/ Amanda Griffith-Atkins 13:13
13:13 Play Later Play Later Lists Like Liked13:13
Play Later Play Later Lists Like LikedSticker Club 2024 is live!! And to celebrate, we’ll be handing out a book bundle of six amazing disability parenting books in a giveaway sponsored by Amanda Griffith-Atkins. In this episode, we’re sharing the titles of these disability parenting books, what we love about them, and how you can enter the giveaway to win this book bundle! (Spoiler: joining Sticker Club today will get you a leg up!) If you want to learn more about how to support The Rare Life, get some awesome stickers as a thank you, and potentially win this book bundle, don’t miss this episode! ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Links: Join the TRL Sticker Club to support the podcast for the coming season! 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!…
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