The Rare Life

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

It’s the moment you’ve all been waiting for... The Rare Life Sticker Club is back and better than ever! In case you missed it last year, Sticker Club is an annual fundraiser for listeners to help support the show by signing up for a monthly donation (and as a thank you, we send you stickers!) In this episode, we’re telling you all about the new designs (there are three this year, and they are so cool!), how Sticker Club works, the new options for receiving your stickers, and how to join an awesome giveaway for Sticker Club members sponsored by Amanda Griffith-Atkins. If you want to learn more about how to support The Rare Life AND get some awesome stickers as a thank you, don’t miss this episode!⠀⠀⠀⠀⠀⠀⠀⠀⠀ Links: Join the sticker club: https://therarelife.org/stickerclub 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! 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!

Nikole’s delivery for her daughter Chloe was... less than ideal for quite a few reasons.  Nikole’s health was in jeopardy, Chloe was delivered nearly two months early, and according to one especially rude NICU doctor, Chloe “looked funny.” This difficult experience reached a crescendo when Nikole was given the news of Chloe’s rare diagnosis, Wolf Hirschhorn syndrome—which included some inaccurate information about the disease (like an inaccurate life span.) But despite this traumatic start, Nikole and her family have learned to adjust, adapt, and help Chloe to thrive in the years since. In this episode, Nikole is sharing how she and her family created a team of medical staff they could trust despite some past bad experiences, how they celebrate each and every milestone for Chloe, and how they keep moving forward, as they are determined to never, ever give up on their daughter. This episode is equal parts relatable and uplifting. You can’t miss it!⠀⠀⠀⠀⠀⠀⠀⠀⠀ Links: 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 Nikole @martinfamilyshenanigans! 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 no secret that parenthood is expensive. But when it comes to parenting a medically complex kid, the dial is turned up to 100. Everything with an “accessible” label is marked up 10x. We have to make renovations to our homes and vehicles with little to no financial assistance. And that’s often on top of career and work changes that have made our finances tighter to begin with. In this episode, I’m bringing back Alyssa Nutile and Amanda Griffith-Atkins to sort through the thoughts, feelings, and anxieties from this community about the financial aspect of this life. We cover many of the stressors, the guilt and shame associated with feeling like you can’t provide for your child, and some of the resources and routes other parents have used to ease some of the financial stress. This episode touches on some deeply personal territory for many of us, but I think it’ll leave us all feeling less shame and loneliness. Let’s dive in! Links: Visit the ABLEnow website to learn how to open an account for your child! Visit SupportNow to start a registry and share with your community. Join The Rare Life newsletter and never miss an update! Fill out our contact form to join upcoming discussion groups! Follow Alyssa on Instagram @caffeinated_caregivers! Follow Amanda on Instagram @amanda.griffith.atkins! Follow us on Instagram @the_rare_life! Listen to previous episodes with Alyssa: Ep 170 on Hospitalizations Ep 140 on Alyssa’s Story Ep 125 on Traveling with Disabled Children & on our recent season opener and finale episodes! Listen to previous episodes with Amanda: 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. 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 few things as intense as an inpatient stay with your child. The pressure is on, the anxiety is at an all-time high, and the hypervigilance is ever present. And honestly? It doesn’t even matter if it’s a planned observation or an emergency situation, it’s still so stressful. In this episode, I talk through the whole experience of hospital stays with Alyssa Nutile and Larisa Bothma. We discuss experiences and thoughts shared from the community, as we cover topics like the lack of food and sleep, the triggers that are all over the hospital, the difficulties that continue as we come home, and so much more. Plus, we cover those existential questions that come up during hospital stays... like if this might be the one we don’t all come home from, and how those around us can help out during a hospital stay. If your child has ever had a hospital stay, this episode is going to be so relatable.⠀⠀⠀⠀⠀⠀⠀⠀⠀ Links: Get tickets to a special screening of The Zebra and The Bear just for The Rare Life listeners! Get our packing list here! Listen to our episode about when your child is inpatient during events and holidays. Join The Rare Life newsletter and never miss an update! Fill out our contact form to join upcoming discussion groups! Follow Alyssa on Instagram @caffeinated_caregivers! Follow Larisa on Instagram @sarmabothma! 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 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!

Stephanie’s family had big plans before her son Garrett was born. A business idea, a roadmap laid out, and the world felt wide open before them. And then... things changed. Garrett was born with a (still undiagnosed) medical complexity that requires intense, round-the-clock care. Trauma ensued. Tears were shed. And tough decisions were made, as Stephanie to become his full-time caregiver. But even though the big plans for their family had to be adjusted, Stephanie doesn’t spend her time grieving the “what ifs.” In this episode, she shares how she’s accepted the reality that she’s been given, how her family has navigated medical complexity, and how at the end of the day, she was able to embrace her ballroom dreams after all. This episode is equal parts raw, honest, and uplifting. Don’t miss it!   Links: 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 Stephanie on Instagram @truthandbeautyremain! 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 we first enter this world of medical uncertainty as parents, no one gives us a handbook. None one holds our hand to walk us through what to expect, what is coming next, and what life might look like going forward. So we asked this community, if you could go back to the beginning –knowing what you know now– what would you tell yourself as a brand new medical parent? What would you want to know right at the beginning? And in today’s episode, I’m sitting down with Chandra Bloomfield to share those answers. We sift through all the wisdom, encouragement, and validation from seasoned parents as they share their heart with anyone coming after. And to be honest, there’s lot of tidbits in here that are relevant for more experienced parents too. This episode is so tender and meaningful, and there is something here for everyone. Links: Set up an AbleNow account for your child today! Join The Rare Life newsletter and never miss an update! Fill out our contact form to join upcoming discussion groups! Episodes Mentioned: Ep 131: Chronic Stress Ep 132: When Self-Care Gives Us the Swears Ep 138: Therapy for us Ep 106: Nonspeaking Episode with Brianna Nonspeaking Episode with Suzi Ep 134: Child Loss 101 Ep 137: Life After Child Loss Ep 126: When to scale back on therapies Ep 22: "It’s All My Fault” Ep 157: Friendships with people without disabled kids Ep 153: Hurtful Things Loved Ones Say Ep 150: Sibling Voices Ep 50: The Sibling Perspective Ep 118: Organization Ep 81: Health Anxiety Books/poems: The Life We Never Expected by Andrew and Rachel Wilson (faith-based) Special by Melanie Dimmitt Demystifying Disability by Emily Ladau Welcome to Holland by Emily Perl Kinglsey Visit Supportnow to set up your support registry! Manage your child’s medical recordswith Hibi! Get a medical ID bracelet through MyID! Get our favorite organizational cart from Ikea. Follow Accessible Adventures on Instagram! Follow Chandra on Instagram @miraculouslycomplexmaddie! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode.

How do you give your child medical autonomy when they struggle to communicate? How do you determine their preferences when they cannot explain their inner thoughts to you? How do you help them when they cannot tell you where their pain is? These are the questions that keep today’s guest, Suzi Bubion, up at night. Her son, Oliver, is nonspeaking, and this struggle to communicate is one of the biggest challenges for Suzi’s family as they help Oliver navigate his disabilities. In this episode of The Rare Life, we’re digging into how we long to know our nonspeaking kid’s inner thoughts, how their challenges to communicate affect their medical autonomy, and why, at the end of the day, so many of us would give anything for them to be able to tell us exactly what they do –and don’t– want. 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! Join The Rare Life newsletter and never miss an update! Fill out the application for our final board seat! Listen to Ep 124: Suzi’s Story. Follow Suzi on Instagram @oliversodyssey1! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! 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!

Before we have children, most of us never envision what it would be like to raise a disabled child...and certainly not two of them with the same degenerative disease (Acid Sphingomyelinase Deficiency, ASMD for short, also sometimes called Niemann Pick Disease Type A/B). But this is the exact situation Jillian Arnold found herself in after the birth of her daughter, Stella. In this tender, raw episode, Jillian describes what it was like navigating a surprise pregnancy in the midst of receiving her son Roman’s diagnosis, the gut-wrenching news that her daughter had the same disease, and how the disease has impacted each child in unique ways. Jillian also shares the way her own mindset has changed, including the way she cherishes every moment she does get to spend with her children. 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: Join The Rare Life newsletter and never miss an update! Fill out the application for our final board seat! Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child! Listen to Ep 157: Friendships with People Who Don’t Have Disabled Children with Jillian Arnold. Listen to Madeline’s episode on Confessions of a Rare Disease Mama. Follow Jillian on Instagram @confessionsofararediseasemama! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! 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 for Season 10! And once again, we’re coming back to the topic of our children’s disabilities and medical complexities. We have episodes on what we wish therapists knew, being a “crunchy” parent with medical complex children, some heart-wrenching story episodes, and a few *spicy* (and currently secret) episodes that’ll come out toward the end of the season. But, before we dive into our sneak peeks at the end of the episode, we’ve got some exciting updates for you! We’re launching a newsletter that you should join so you never miss an episode, update, or Sticker Club news! (Yes, Sticker Club is coming back this fall!) We’re also in search of one last board member for The Rare Life! Check out the application and fill it out if you think you’d be a good fit! Thank you so much for being here and supporting The Rare Life for 10 seasons! We are so excited for this upcoming set of episodes, and we can’t wait to share them with you.   Links: Join The Rare Life newsletter and never miss an update! Fill out the application for our final board seat! Follow Alyssa on Instagram @caffeinated_caregivers! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! 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!

Have you ever wanted to tell your child’s therapist *exactly* how you feel about therapy homework? Or remind them just how many other therapy appointments you have scheduled this week. Or maybe just explain to them that... you want to be mom, not play the role of therapist today. In today’s episode, I’m joined with guest and fellow disability parent Alex Farha to go through all the things that parents from this community wish they could say to their child’s therapists. We cover all kinds of topics, but at the end of the day, I think we mostly just want to remind therapists that our disabled and medically complex kids are children too, and whatever therapy activities they are expected to do should account for that. This episode was so cathartic to record with Alex, and I think every parent who has ever had a child in therapy is going be nodding their head the whole time. Also, huge thank you to our sponsor Permobil for their wide array of mobility devices and their support of this community!   Links: Join The Rare Life newsletter and never miss an update! Fill out the application for our final board seat! Visit the Permobil website to learn more about their mobility products! Listen to Ep 126 on when to scale back therapies. Listen to Ep 4 on how we are NOT our child’s therapist. Connect with Alex on Instagram @al.farha_! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! 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’re finally rounding out Season 9, and what a season it’s been. The topic of this season was relationships, and perhaps as expected, the episodes this season were weighty, tender, and so touching. And besides the production of the podcast, we were busy coming into our own with some big milestones for The Rare Life as a nonprofit with grant submissions and running our first major fundraiser. In this episode, 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 9. We’re also sharing the most popular episodes of the season, just for some comparison (it’s not always the ones you might expect!) Finally, we’re giving you a glimpse into Season 10 and the all-new summer format we’re trying out, as we publish some lighter mini-episodes in the off season this summer. Thank you so much for being here and supporting The Rare Life for 9 seasons now! We would not be here without you. Let’s dive in! Links: Follow Alyssa on Instagram @caffeinated_caregivers! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! 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 you have a medically complex child, you probably have some realization that the experience you have with your child isn’t “typical.” But sometimes, it’s hard to understand just how different from the “norm” it was, until another child comes along – particularly one without disabilities or medical complexities. In this episode, Brianna, a mom of disabled son who went on to have another nondisabled child, joins me to discuss how vastly the experience has been from one child to another. We also play audio clips from listeners as they share their own grief, joy, and insights that came up for them after having a nondisabled child after their disabled child. And we end the episode by reiterating the honor and privilege it is to be able to raise our nondisabled and disabled children alongside each other, while still the conflicting emotions that come up for us. This episode is so poignant and full of so many thoughtful reflections. Don’t miss it! Links: Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! Listen to Brianna’s story in Ep 105 and Ep 106. Listen to Ep 99 on Family Planning. Follow Brianna on Instagram @brianna.alcox! 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!

After Ashley Smith’s son Deacon was admitted to the NICU, and one thing after another cascaded out of control with his care, she found herself literally screaming in the nursery “THIS IS NOT MY PLAN!” While not all of us have screamed this out loud, so many of us have had a similar breaking point, where the weight of fear and grief and lost expectations bear down on us. In this episode, Ashley shares what it was like to navigate this complex grieving process in her own family after her son was diagnosed with a rare syndrome. She shares what her family grieves the most (and it’s a little surprising), how her disabled and non-disabled child interact and grow together, and what it’s been like for their family as she continued her career and her husband stayed home as a full-time caregiver for their children. This episode has ALL the feels. Let’s dive in! Links: Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! Follow Ashley on Instagram @ashleypaigesmith! 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!

Nothing breeds resentment faster than one member of a romantic partnership feeling like they're pulling all the weight in one area of life. And when it comes to the parents of medically complex kids, that resentment can compound even faster, especially as the mental load of navigating medical care often falls onto one partner. (Let’s be real: it’s usually the mom.)   In this episode, we’re diving into this topic of sharing the mental load – and how we can make that load-sharing a little more equitable. Amanda Griffith-Atkins and her husband join me to pull back the curtain on what it was like for them to find a better way to share the mental load that comes with parenting their medically complex child.⠀⠀⠀⠀⠀⠀⠀⠀⠀They share the ways they improved their communication, helped each other take equal responsibility and ownership of medical decisions, and built trust that they could each handle situations that would spring up suddenly. Amanda also offers some actionable tips for other families with medically complex children.⠀⠀⠀⠀⠀⠀⠀⠀⠀If you’ve been trying and struggling to find a balance that works for your family, this is an episode you can’t miss. Links: Get the book “Fair Play” by Eve Rodsky. Listen to Ep 81 with Amanda on health anxiety. Follow Amanda on Instagram @amanda.griffith.atkins! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions. 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!

Before she had her son, Serena was already a pediatric SLP, business owner, and disability advocate who spent her time empowering families to understand and become more comfortable with their children’s disabilities. So, she was prepared for anything, or so she thought. But as it turns out, no amount of education or experience can prepare you for the moment your child receives a diagnosis for a disease that will eventually kill them. In this episode, I sit down with Serena Murison, SLP and owner of Play Spark, as she shares the story of discovering that her son Rudy has Lama2 Muscular Dystrophy, a disease that is progressive and life-limiting. Serena walks us through the emotional rollercoaster of her son’s first few months, as well as the conflicting feelings that have come up for her in the way that she both embraces her son’s disability and grieves the pain of knowing his disease will likely take his life. This episode is SO REAL and raw. It’s one you can’t miss! Links: Get a copy of “The Power of Now” by Eckhart Tolle. Get a copy of “Demystifying disability” by Emily Ladau. Get a copy of “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity” by Steve Silberman. Listen to Ep 97: Melissa’s Story. Listen to Ep 77: To those who cannot say I wouldn’t have them any other way. Visit Serena’s website, Play Spark. Follow Serena on Instagram @play_spark! 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!

Friendship, especially with those who don’t have disabled children, gets more complicated once you’ve had your own child with disabilities. It’s not necessarily fair, but it doesn’t change the fact that we often end up interacting differently with friends we had before our children were born.In this episode of The Rare Life, I’m joined by Jillian Arnold, host of her own disability parent podcast and mom to Roman and Stella, who both have ASMD (a.k.a. Niemann Pick Disease Type A/B). We dig into all the aspects of befriending and maintaining friendships with parents who don’t have disabled children. We cover the logistical difficulties, the triggers that come up for us, the beautiful parts, and how to stay empathetic to those who are experiencing the world so differently from us. This is a gem of an episode, and it was made possible by our generous sponsor Moog Medical. They are so dedicated to our children with medical complexity that they've created an entire Feeding Pump Guide to share with anyone who cares for your child to help operate and troubleshoot your Infinity pump.   Links: Visit MOOG’s website to learn about all the resources they’ve created to support your tube-fed child (and you!) Listen to Ep 151: Befriending Other Disability Parents. Listen to Ep 95: Parable of the Pain Scale. Listen to Jillian’s podcast Confessions of a Rare Disease Mama. Visit Jillian’s website to raise funds to cure her children’s rare disease ASMD (a.k.a. Niemann Pick Disease Type A/B). Follow Jillian on Instagram @confessionsofararediseasemama! 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!