When your child has complex medical needs, the question of more children isn’t always simple.And for some parents of disabled children, the decision to stop at one might not even feel like a decision at all.In this episode, Alyssa shares responses from hundreds of parents who live in this reality: the sadness of not giving their child a sibling, the guilt of choices that never felt like choices, the relief of knowing their family is complete, and the complicated emotions that sit in between.If you’ve felt sadness, certainty—or both at the same time—about stopping at one, we hope this episode will feel deeplyfamiliar.Links:Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups!Listen to Ep 99: Family Planning.Listen to 194: Season 12 Kickoff forMadeline’s big announcement!Follow us on Instagram @the_rare_life!Donateto the podcast or Contactme about sponsoring an episode.Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions.Access the transcript on the website here. And if you love this podcast, please leave usa rating or review in your favorite podcast app!
Season 12 is here and, once again, the theme is all about relationships: the relationships we have with our children, our partners, our children’s medical teams, and even each other.We’ll be sharing episodes featuring incredibly tender stories, exploring the difficulty around making friends with other disability parents, and discussing the many ways this life can change our romantic relationships, just to name a few.Plus, we have a big announcement! This season is going to be a little different than the last 11, but don’t worry. It’s all good things, and The Rare Life isn’t going anywhere anytime soon.Finally, we’re wrapping up this season opener with clips from the first four episodes. This is one episode you’re not going to want to miss!Links:Join The Rare Life newsletter and never miss an update!Listen to the Getting to Know Alyssa episode.Listen to 140: Alyssa’s Story.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.
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!
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 KidsJoin 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!
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!LinksLearn 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 HobbiesEp 171 on Financial StrainEp 159 on Sharing the Mental LoadEp 156 on Getting a DivorceEp 153 on Hurtful Things Loved Ones SayEp 147 on Sex and Disability ParentingEp 142 on If My Disabled Child Outlives MeEp 135 on Career and Family RolesEp 132 on Self-CareEp 131 on Chronic StressEp 130 on Anticipatory GriefEp 99 on Family PlanningEp 85 on Parental IdentityEp 81 on Health Anxiety& our holiday season eps: Being Hospitalized During Holidays - Isolating at Home During Holidays & Why Holidays Can Suck.
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! LinksLearn 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.
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 KidsFill 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!
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!
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!
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!
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!
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!
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 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 KidsRead more aboutthe 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 orContact me about sponsoring an episode.Followthe Facebook page.Join the Facebook groupParents of Children with Rare Conditions.Access the transcript on the websitehere.And if you love this podcast, please leave us a rating or review in your favorite podcast app!
The 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 sponsorFunctional 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 orContact me about sponsoring an episode.Followthe Facebook page.Join the Facebook groupParents of Children with Rare Conditions.Access the transcript on the websitehere.And if you love this podcast, please leave us a rating or review in your favorite podcast app!
When 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!
It’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!
Season 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!
Watching 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!
We 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