The Rare Life

Season 14 is here, and this time the focus is on how raising a disabled or medically complex child impacts us as people. This season, we’ll be talking about things like anxiety, PTSD, identity, feeling like your body failed your child, numbing out and dissociation, exercise, and being seen as a “Debbie Downer” when you’re honest about the realities of this life. As always, we’ll also have story episodes woven throughout the season, including a long-overdue story episode with Amanda Griffith-Atkins. We’re also sharing some behind-the-scenes updates in this episode, including how Madeline and Alyssa are splitting hosting and production this season, our first in-person board retreat in Maine, and a little of what we’ve been up to over the summer. Finally, we’re wrapping up this season opener with clips from the first few episodes. Don’t miss it! Links: Access the NICU Survival Guide here or at https://therarelife.org/nicuguide. Listen to Ep 81: Health Anxiety. Listen to Ep 85: Should A Child’s Disability be Part of Their Parent’s Identity? w/ Emily Ladau. Fill out our contact form to join upcoming discussion groups! Join The Rare Life newsletter and never miss an update! Follow us on Instagram @the_rare_life ! Donate to the podcast or Contact me about sponsoring an episode.

It’s finally here! For the last year and a half, we’ve been working on this project to be a big hug for NICU families from parents who just get it. In this episode, we’re sharing our NICU Guide for the first time, why we created it, who it’s for, and how you can help get it into the hands of families who need it the most. If you’d like to help, send us a message on Instagram, on therarelife.org/contact or by emailing us directly at team@therarelife.org. A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com! Links: Access the NICU Survival Guide here. Get involved with distribution efforts by emailing us team@therarelife.org. Fill out our contact form to join upcoming discussion groups! Join The Rare Life newsletter and never miss an update! Follow us on Instagram @the_rare_life ! Donate to the podcast or Contact me about sponsoring an episode.

Imagine this: You’ve just finished going through the diagnostic process for your child’s rare disease. You’re trying to find your new normal. And in the midst of all this, you continue to uncover your own medical complexities. That story isn’t foreign to Sarah, our guest in today’s episode. She shares both her and her daughter’s diagnostic journey, how that impacts their life in unique ways, and why she’s ultimately thankful to be able to understand her daughter’s struggles. A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com! Links: Fill out our contact form to join upcoming discussion groups! Join The Rare Life newsletter and never miss an update! Follow us on Instagram @the_rare_life ! Donate to the podcast or Contact me about sponsoring an episode.

Parenting a medically complex child without a partner or co-parent can bring a new level of difficulty. From managing the financial realities of a solo parent household to the emotional weight of making all the decisions on your own to the uncertainty of who would care for your child if something happens to you, we’re covering what makes solo medical parenting a little different from a partnered parenting experience. (And why it’s unfortunately still relatable to some parents who technically have partners too.) A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com! Links: Fill out our contact form to join upcoming discussion groups! Join The Rare Life newsletter and never miss an update! Listen to Ep 156: Should I Get a Divorce? Follow us on Instagram @the_rare_life ! Donate to the podcast or Contact me about sponsoring an episode.

As parents taking care of disabled and medically complex kids, we could probably use a little more help and support than the average person... But that doesn’t make it easy to ask for it. From guilt to societal pressure to simply not having anyone you can trust for support, we’re digging into why help is just so hard to ask for. A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com! Links: Fillout our contact form to join upcoming discussion groups! Join The Rare Life newsletter and never miss an update! Follow us on Instagram @the_rare_life ! Donate to the podcast or Contact me about sponsoring an episode.

As our disabled and medically complex children grow and mature, caring for and navigating their sexual health can be a tricky topic. From appropriately navigating sexual activity, consent, basic hygiene and even more complicated topics like birth control and how puberty can bring about new health complications, we’re breaking down a ton of different sexual health aspects in this episode. A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com! Links: Fill out our contact form to join upcoming discussion groups! Join The Rare Life newsletter and never miss an update! Follow Amanda on Instagram @amanda.griffith.atkins! Follow Jill on Instagram @jill.arneson! Follow us on Instagram @the_rare_life ! Donate to the podcast or Contact me about sponsoring an episode.

Clinical trials are so important. They’re how new therapies and treatments and cures are developed for diseases, and how we update our medical knowledge. At the same time, they aren’t without risk for our kids and our families. So, how do you decide whether it’s worth it? We’re breaking down that question with pros, cons, and personal experiences. A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com! Links: Fill out our contact form to join upcoming discussion groups! Join The Rare Life newsletter and never miss an update! Follow us on Instagram @the_rare_life ! Donate to the podcast or Contact me about sponsoring an episode.

Nature can be healing. But when you have a disabled or medically complex child, getting outside can also be complicated. Today, we’re talking about the ways nature grounds us, the grief that can come up when it is not accessible to our kids, and the small, beautiful ways our families still find their own version of outside. A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real food meals that are ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com! Links: Fill out our contact form to join upcoming discussion groups! Join The Rare Life newsletter and never miss an update! Follow us on Instagram @the_rare_life ! Donate to the podcast or Contact me about sponsoring an episode.

For most of us, traveling with medically complex and disabled children can feel daunting, scary, or maybe even impossible. But while not necessarily easy or simple, if travel is a priority for your family, it is possible with the right planning and preparation. In today’s episode, we share the best tips and tricks from The Rare Life community. We cover everything from general planning to airplane specific tips (there are a ton!) to finding the best accommodations and more. We even have a few tips for camping with medically complex kiddos! Plus, we also dive into the big feelings that can come up for us around traveling with our kids and why it’s okay if that’s not a priority for your family right now. If you really want to take your disabled children on a trip, there are many ways to do it, but we also recognize that travel still isn’t feasible or accessible for many. Thank you to everyone who submitted tips, tricks, hacks, and ideas to this episode! And don’t forget to check our website and YouTube channel (linked below) for articles linking our favorite travel items, carriers, and tips, plus images of all the setups and devices parents in our community use. Links: Visit our Youtube channel to see thevideo version of this episode with photos of all the items mentioned and captions so you can read along! Listen to Ep 118: Organization Hacks for helpful devices when packing andtraveling. Listen to Ep 66 with Falesha Johnson on how she travels with her daughter Cali, who was machine dependent at the time. Follow us on Instagram @the_rare_life ! Fill out our contact form to join upcoming discussion groups! Join The Rare Life newsletter and never miss an update! Donate to the podcast or Contact me about sponsoring an episode.

The dads deserve a village too. In this Father’s Day mini episode, Madeline talks with Lizzy of Wonders of Wally about her poem, The Forgotten Father, and the quiet, crushing ways dads are often expected to carry everything without being seen. A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real food meals that are ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com! Links: Listen to Ep 146: The Dad Perspective. Fill out our contact form to join upcoming discussion groups! Join The Rare Life newsletter and never miss an update! Follow Lizzy on Instagram @wonders_of_wally ! Follow us on Instagram @the_rare_life ! Donate to the podcast or Contact me about sponsoring an episode.

It’s summer! But when you have a disabled or medically complex kids, this season can bring with it many, many mixed feelings. Today, we’re digging into all of that: how we feel about summer, what makes summer uniquely hard for our families, and the parts of summer we still love anyway. A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com! Links: Fill out our contact form to join upcoming discussion groups! Join The Rare Life newsletter and never miss an update! Follow us on Instagram @the_rare_life ! Donate to the podcast or Contact me about sponsoring an episode.

Season 13 is coming to a close, and this season covered a lot of heavy, but necessary ground. In this finale episode, Madeline and Alyssa are joined by Caitlyn, a listener and mom to Miles, to look back on the episodes that were the hardest, most impactful, and most validating to hear. We’re also sharing listener reflections, talking through the clips from all 14 episodes, and discussing why this season felt especially deep for our community. And finally, we’re sharing a few personal and behind-the-scenes updates, including Madeline preparing to become a foster parent, Alyssa editing with a broken foot, and a peek at the summer mini episodes coming next. Thank you for listening, sharing your stories, and being part of The Rare Life community. We’re so grateful 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!

Most of us can’t be with our children 24/7. At some point, we often must hand off care of our children school staff, nurses, therapists, hospitals, family members, etc to help care for our disabled and medically complex kids. And honestly? That can feel terrifying. In this episode, we're exploring one of the hardest topics parents in this community navigate: preventing abuse and neglect for children who may not be able to fully communicate what happened to them. We talk about the fears parents carry, missed medical care and hospital concerns, building trust with other caregivers, red flags families watch for, and the real-life strategies parents use to try to keep their children safe. If you’ve ever wondered how to balance protection with independence, trust your gut when something feels off, or navigate the reality that you can’t always be there, we hope this episode gives you a little guidance to get started. Links: Fill out our contact form to join upcoming discussion groups! Join The Rare Life newsletter and never miss an update! Follow us on Instagram @the_rare_life ! Donate to the podcast or Contact me about sponsoring an episode.

For many parents of disabled and medically complex children, “raising awareness”, especially on social media, can start to feel like another responsibility sitting on top of an already overwhelming life. Post more. Educate people. Share your child’s diagnosis. Explain disability better. But what actually changes when we do that… and what are we giving up in the process? In this episode, Alyssa and Madeline explore the tension many caregivers feel between wanting the world to better understand disability and wanting to protect their child’s privacy, energy, and family life. They talk about awareness versus advocacy, the pressure social media creates to constantly educate others, the guilt parents carry when they don’t share publicly, and how many families’ relationships with awareness evolve over time. If you’ve ever wondered whether sharing your child’s story is helping, hurting, healing, or just exhausting, this episode will give you a lot to think about. Links: Fill out our contact form to joinupcoming discussion groups! Join The Rare Life newsletter andnever miss an update! Listen to Ep. 100: Raising Awareness | DisabledChildren Don't Owe Society Anything! Listen to Ep. 219: Handling Questions fromStrangers About My Disabled Child! Follow us on Instagram @the_rare_life ! Donate to the podcast or Contactme about sponsoring an episode.

For many families of disabled and medically complex children, school is rarely a simple decision. It’s a constant balancing act between medical needs, safety, transportation, therapies, staffing, inclusion, and what your child can realistically access. In this episode, Alyssa is joined by Rachel, a special education professional and fellow disability parent, to talk about the realities of navigating school options for medically complex kids. The types of schooling options available, the differences between these options, support shortages, IEPs, inclusion, and the emotional toll of having to constantly fight for the support your child is legally entitled to. If you’ve ever felt overwhelmed trying to figure out the “right” educational setting for your child, this episode is here to offer you some hope and clarity! Links: Fill out our contact form to joinupcoming discussion groups! Join The Rare Life newsletter andnever miss an update! Listen to Ep. 222: Intellectual Disabilities! Follow us on Instagram @the_rare_life ! Donate to the podcast or Contactme about sponsoring an episode.

For most people, a trip to the ER is unexpected. But when your child has medical complexities, it’s often an inevitable and rhythmic part of life. Every time something seems off and feels like it’s progressing, you’re forced to make a gut-wrenching call: do we handle this at home, or do we go in? In this episode, we’re unpacking what those moments actually look like. From the fear that sits in the background of every illness, to the reality of navigating ER teams who don’t know your child, to the emotional whiplash of being hyper-focused in the moment and unraveling later. We talk about how these decisions evolve over time, what experience teaches you (and what it doesn’t), and why “better safe than sorry” doesn’t even begin to capture the full picture. And a big thank you to Functional Formularies, our sponsor for this episode. Links: Learn more about Functional Formularies! Join The Rare Life newsletter andnever miss an update! Fill out our contact form to joinupcoming discussion groups! Listen to Ep. 185: Medical Parent Trauma! Listen to Ep 170: Hospitalizations! Follow us on Instagram @the_rare_life ! Donate to the podcast or Contactme about sponsoring an episode.

Before Logan’s diagnosis of Sanfilippo syndrome, Noelle assumed they’d figure out what was off... and then fix it. She never imagined that her family would be facing a progressive, terminal disease that no one, including their doctors, knew much about. In this episode, Noelle shares how they navigated those early decisions, including choosing a high-risk stem cell transplant when it felt like the only option, and what it’s been like to live with that choice as the disease continued to progress. We also talk about what advocacy actually looks like long-term: fighting the same systems over and over again, pushing back when care is taken away, and the strange mix of exhaustion and purpose that comes with it. This is one episode you won’t want to miss! Links: Join The Rare Life newsletter andnever miss an update! Fill out our contact form to joinupcoming discussion groups! Listen to Ep 180: Does It Get Easier? Follow Noelle on Instagram @love_logan07 ! Follow us on Instagram @the_rare_life ! Donate to the podcast or Contactme about sponsoring an episode.

From an early age, most of us are taught that being “smart” matters. It’s tied to the way society measures and views success, independence, and worth. So what happens when you're raising a child with an intellectual disability in that world? In this episode, Alyssa, Amanda, and Madeline get honest about all of it: the grief that's hard to express, the fear that you won't be able to connect with your child, and the ways people with intellectual disabilities get left out, even within disability spaces. Plus, they dig into the nuance behind "presume competence," the disability hierarchy often felt in the backdrop of these conversations, and what radical acceptance actually looks like in lives like ours. Links: Join The Rare Life newsletter andnever miss an update! Fill out our contact form to joinupcoming discussion groups! Listen to Ep 19: Katie's Story! Listen to Ep 166: Nonspeaking Child! Follow Amanda on Instagram @amanda.griffith.atkins ! Follow us on Instagram @the_rare_life ! Donate to the podcast or Contactme about sponsoring an episode.

At face value, our kid’s equipment is just stuff. It helps our kids move, eat, hear, breathe, communicate, and more. But when that “stuff” feels like it’s taking over our lives (and homes), complicated feelings can come up. In this episode, Madeline and Alyssa talk about the emotional, logistical, and financial reality of living with medical and mobility equipment. From the grief that can show up when a new piece of equipment arrives, to the frustration of a system that makes you fight so hard to get something your child may not even like, there's so much more to this topic than it seems on the surface. We get into the design problems that make managing equipment harder, the disagreements that come up when one partner is ready to try everything and the other isn't, the comments from other people that land all wrong, and what it actually looks like to embrace your child’s equipment in whatever way you can. Whatever your relationship with your child's equipment right now, this episode has something for you. And a huge thank you to our sponsor, MOOG Medical for making some parts of managing our children’s equipment a little easier with their 24/7 helpline and for making this episode possible! Links: Visit MOOG’s website to see themany ways they support families like ours! Join The Rare Life newsletter andnever miss an update! Fill out our contact form to joinupcoming discussion groups! Listen to Ep 125: Traveling with Medically ComplexKids. Listen to Ep 153: Hurtful Things Loved Ones Say. Listen to Ep 214: Relocating for Our MedicallyComplex Kids. Follow us on Instagram @the_rare_life ! Donate to the podcast or Contactme about sponsoring an episode.

Before his daughter was born, Robin thought he had a sense of what it meant to be a dad. But after a prenatal diagnosis of Trisomy 13, that understanding started to unravel. In this episode, Robin reflects on what it was like to face a future filled with uncertainty, including the possibility that his daughter might not live long and might require a completely different kind of parenting than he had imagined. He shares how that uncertainty led him to emotionally distance himself early on, the role grief and fear played in that response, and how his connection to his daughter has grown and changed over time. This conversation also touches on learning to be present, understanding your role and strengths as a parent, and how isolating this life can feel, even as you look for connection with others who get it. This is one you can’t miss. Links: Join The Rare Life newsletter andnever miss an update! Fill out our contact form to joinupcoming discussion groups! Listen to Ep 146: The Dad Perspective. Listen to Ep 151: Finding Other Disability ParentFriends. Listen to Ep 197: Difficulty with Making DisabilityParent Friends. Follow Robin on Instagram @thedadadays ! Follow us on Instagram @the_rare_life ! Donate to the podcast or Contactme about sponsoring an episode