The Rare Life (Madeline Cheney)
Explore every episode of The Rare Life
| Pub. Date | Title | Duration | |
|---|---|---|---|
| 15 Oct 2020 | 18: Season 2 Kickoff | 00:06:23 | |
Season 2 is finally here! I’ve been really looking forward to Season 2 because I have some amazing guests to share and the theme is dynamite. We will be focusing on our personal journey and evolution as parents! In this kickoff episode, I share summaries and audio clips of the first four episodes in Season 2 so you can really whet your appetite for the good stuff coming! Listen to the Preface episode here: https://therarelifepodcast.com/show-notes/preface Visit my website for the full transcript and comments! https://therarelifepodcast.com/ TRANSCRIPT: Madeline Cheney 0:00 | |||
| 20 Jul 2023 | To Those Who Cannot Say, “I Wouldn’t Have Them Any Other Way.” (Rebroadcast) | 00:30:30 | |
I am definitely one of them. Hearing other parents of children with disabilities say adages like this one has always made me squirm inside because it’s simply untrue to me. I would have Kimball another way—free from pain and suffering. But I’ve realized a trend—the parents saying this phrase were almost always parents to children with disabilities that do not cause pain or suffering in and of themselves. And are certainly not life-shortening. In this solo episode, I divide out disabilities and medical issues into those two categories—ones that cause suffering and the ones that do not. And I suggest that we accept that we will probably always hate those in the first category (because what parent loves something that causes their child pain) and move towards acceptance and love for those disabilities in the latter group. I also acknowledge that the sadness or pain we have over any of these disabilities or medical issues always stems from the love we have for our children. *This is a rebroadcast of one of my favorite episodes of The Rare Life for you to listen to while we work on production for season 8, coming in August! If you’d like to discuss this episode with other members of The Rare Life community, we’ll be holding two different meetings run by our amazing group facilitators every Tuesday at 8pm in PST &CST. Fill out our contact form to get the Skype link each week!* Links: Sign up to get an invitation for our community discussions every Tuesday during the off-season! Support your mental health and this podcast by checking out our sponsor BetterHelp for licensed online counseling. Solo episode about Wendy and our huge struggle together. Ep. 13: Feeding Tube Adventures. Follow Madeline on Instagram. Join the Facebook group Parents of Children with Rare Conditions. Donate to the podcast via Buy Me a Coffee. Contact me about sponsoring the podcast. Follow the Facebook page. 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! | |||
| 02 Sep 2021 | 62: Hospitalizations w/ Erica Ryan | 00:40:53 | |
Erica and Shaun learned quickly what works well during hospitalizations and what doesn’t during the 526 days they spent inpatient with their son Westly. After 526 days spent inpatient with their son Westly, Erica and her husband Shaun are alleged pros. They learned pretty quickly what works well—and what doesn’t. I met her a year ago when she sent me a copy of her Extended Stay Notebook, a spiral bound notebook meant for tracking medical happenings, and staying on top of things while at the hospital. She and her husband co-created it, in hopes of giving other parents in their situation the confidence and know-how needed to progress safely towards discharge. In this episode, we chat about her inspiration for the creation of the notebook, and she gives us her top three pieces of advice as we navigate hospitalizations with our children. Links: Check out the Extended Stay Notebook by Erica and Shaun Ryan. Listen toEp. 58: Medical Advocacy w/ Tameka Diaz. Listen to Ep. 9: Taking Charge of Your Therapy and Medical Team. Follow Erica on Instagram. Follow me on Instagram. Answer this month’s question. | |||
| 26 Nov 2020 | 24: Disability Advocacy w/ Jenny McLelland | 00:28:20 | |
This episode is an invitation to all of us to join the army of parents like Jenny in improving policies that directly affect our loved ones and others with disabilities. While you’re listening, maybe an issue you’ve run into will pop into your head that you want to tackle, or maybe you can tuck this episode in your back pocket in case you run into issues that matter to you in the future. In this episode, Jenny shares her victory in making in-home nursing more accessible to trach and ventilator-dependent California residents by lobbying at the state level. She also teaches us how we can get our hands wet in state-level advocacy, beginning with issues that matter to us personally. These are civil rights issues. People with disabilities matter. | |||
| 16 May 2024 | 161: Having a Nondisabled Child After Your Disabled Child + Conflicting Feelings That Brings w/ Brianna Alcox | 01:09:41 | |
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! | |||
| 28 Oct 2021 | 70: Accessibility and Ableism w/ Vanessa McLeod | 00:38:25 | |
At only 2.5 years old, Ivy has already faced discrimination based on her disability. In this episode, her mom Vanessa McLeod shares what that’s been like for her to advocate to give her daughter everything she deserves in life. She talks about the ableism they’ve encountered, and her blazing confidence that Ivy will live a fulfilled life. She insists again and again that her daughter’s disability is not sad at all—it’s wonderful. Links: Follow Vanessa on Instagram @venessamcleod_ Follow Madeline on Instagram @the_rare_life Follow The Rare Life on Facebook. Check out our appointment day merch! Support the show and become a Patreon. Vanessa’s Recommended Resources: Crimp Camp on Netflix (film) Demystifying Disability by Emily Ladau (book) Sitting Pretty by Rebekah Taussig (book) Instagram Accounts: @theheumannperspective | |||
| 30 May 2024 | Summer Mini #1: What We Wish We Could Go Back and Tell Ourselves | 00:15:10 | |
When we first start out in this rare life, it’s often terrifying. Everything is coming at us so fast, and sometimes you have to wonder: does it ever get better? Do things ever even out? It might feel impossible in those scary early days, but looking back, many of us have found a new perspective since then. Today, I’m sharing thoughts from this community on what they wish they could go back and say to that earlier version of themselves who was just beginning on their medically complex journey. I’m so excited to kick off our summer minis with this heart-warming episode. 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! Read the original “What We Wish We Could Go Back and Tell Ourselves” blog post. 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! | |||
| 14 Apr 2022 | 86: Karley’s Story | Two Rare Syndromes, Playing the What-If Game, and Appointments on The Daily | 00:36:00 | |
With more than 20 therapists and doctors for her two daughters, Karley spends almost every day at appointments with her two daughters. Her three-year-old Nora has two rare syndromes which come along with many sub-diagnoses including hydrocephalus. In this episode, Karley shares what it was like to receive a prenatal diagnosis and to play the waiting game until birth. She also shares the incredible experience of seeing her baby smile and open her eyes for the first time after a life-saving shunt was placed. We also dig into the dynamics of almost-daily appointments for her family. Links: Follow Karley on Instagram. Follow me on Instagram. Check out photos of Karley + fam on the website. Check out our appointment day merch. | |||
| 18 Jun 2020 | 3: Quality of Life w/ Alyssa Reidhead | 00:31:55 | |
Quality of life can be a complex issue, but also really, very simple: Is your child happy? Do they experience joy? Are they loved? Alyssa affirms that these questions are key in determining our children’s quality of life, and that their abilities have nothing to do with it. We also talk about how medical decision-making on behalf of our children comes into play. She shares some great advice on weighing the side effects against a potential medication or surgery. Alyssa is passionate about the concept of quality of life; her roles both as William’s mother and a RN in oncology have given her unique perspectives both medically and holistically. In this conversation, Alyssa also boldly declares that our children’s disabilities and diagnoses are not negative; they’re positive. Find more details, full transcript, pictures, and a comments go to https://therarelifepodcast.com/show-notes/ep-3-quality-life-special-topic-alyssa TRANSCRIPT: Alyssa 0:00 Madeline Cheney 0:12 Okay, Alyssa, for people who aren't familiar with the term quality of life, how would you describe that or define it? Alyssa 1:15 | |||
| 20 Oct 2022 | 104: Tangible Ways to Support Parents of Disabled Children | A Message for Our Loved Ones | 00:57:02 | |
Having a child with a disability or rare disease can be a lonely experience, often in ways that parents never anticipated. Their lives have changed dramatically and the relationships they used to rely on might feel suddenly distant. Family and friends may want to reach out, but they don’t always know how to offer the support that is most helpful for parents. Their “encouraging” comments sometimes miss the mark and can cause even more heartache for the parents they are trying to help. Or, they might be so at a loss for how to offer support that they just stay away altogether. It’s easy to find lists of things not to say and not to do for parents caring for children with rare diseases, but what about the ways that family and friends CAN offer support? In this solo episode, Madeline shares suggestions from listeners about the kind of support they want from those close to them as they care for their children with disabilities. Parents of children with medical complexities need —and want— their people to stay in their lives, and these tips can help strengthen these relationships. Links: A big, big thank you to everyone who contributed thoughts and suggestions to this episode: | |||
| 19 Nov 2020 | 23: The Story of James | 00:33:27 | |
As a former police officer, Jenny was prepared for the extreme stress of living 200 miles away from her baby in the hospital for nine-months as he fought for his life threatened by severe birth defects as a result of his extremely rare genetic syndrome (one that her 9-year-old and my 2-year-old son share). In this episode, she hilariously recounts describes her memo-writing for each medical appointment, her bottling up of emotions to hold it together, and how refreshingly normalcy of arguments you can expect between any 9-year old boy and his mom. For comments, pictures, and more check out the my website, https://therarelifepodcast.com. | |||
| 17 Jun 2021 | 52: The Story of Levi | 00:34:12 | |
When Levi was only two years old, a brain tumor was discovered. His parents brought him into the hospital for testing after he was inexplicably sick for several weeks. In this episode, mom Kara shares what it was like to get that life-shattering news and to send her toddler off into intensive surgery to remove the mass. Although the surgery was life-saving, it had its own major repercussions for Levi and his body’s functionality. Even now ten years post-op, Levi requires medications and interventions to keep him alive and well. Links: Kara’s coaching: https://www.kararyska.com/ Kara’s podcast: The Special Needs Mom Podcast Follow Kara on Instagram: @kararyska Follow me on Instagram: @the_rare_life | |||
| 14 Nov 2024 | 175: Our Children’s Medical Trauma w/ Katie Taylor, CCLS | 01:04:41 | |
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! | |||
| 28 Apr 2022 | 88: Numbing Out When Things Are Tough w/ Anna Smyth, MS, RYT | 00:46:37 | |
Numbing out is a go-to coping mechanism for so many of us experiencing painful and stressful situations and emotions. And it’s not a bad thing! There are situations when we absolutely need to. But when we numb out excessively, we can become hardened and a bit of a shell of ourselves. And we deserve more. In this episode, mindfulness expert Anna Smyth explains the ins and outs of numbing out and how we can take small and compassionate steps towards choosing to stay present when our kneejerk response is to numb out. As part of this, she leads us through two short mindfulness practices that can aid us in that. Links: Anna Smyth’s website. A STOP practice on YouTube. Follow me on Instagram. Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions. Donate to the podcast via Buy Me a Coffee. Check out our appointment day merch. Check out our sponsor BetterHelp for online licensed therapy. | |||
| 03 Dec 2020 | 25: EMDR Trauma Therapy w/ Rosey Schaefermeyer, LCSW | 00:37:33 | |
What comes to mind when you hear the word “trauma”? For many parents of children with complex medical needs, it’s a very real part of our lives. In this episode, guest Rosey Shaefermeyer answers the questions: 1. What is trauma? 2. What are some red flags that we might need professional help working through our trauma? 3. What is EMDR therapy and how does it work? 4. What can we do if we don’t have the time or money for traditional therapy? BetterHelp affiliate link: https://www.betterhelp.com/therarelife Find a professional offering EMDR in your area here: https://www.emdria.org/find-a-therapist/ Video about EMDR: https://www.emdria.org/about-emdr-therapy/ The Body Keeps the Score: https://amzn.to/30HdczY Answer this month’s question: https://therarelifepodcast.com/ | |||
| 08 Apr 2021 | 42: Friendship + Inclusion w/ Effie Parks | 00:37:24 | |
When it comes to kids with disabilities, friendships can be a bit more complicated thing to navigate than with the average child. Effie is back from her story episode to talk about the ins and outs of her son Ford’s relationship with the world. She shares some truly heartwarming stories of inclusion and the surprising effects of putting LED lights on the wheels of his wheelchair. We also dive into the dynamics of our relationships with friends and family that shift when we add our medically-complex children to the picture. She shares advice on how to keep closeness with them and the importance of finding your people that can really understand your life (ahem, us!). This conversation was a fun one and I hope you enjoy it as much as we did! Links: Follow Effie and Once Upon a Gene podcast on Instagram: https://www.instagram.com/onceuponagene.podcast/ Follow me and The Rare Life on Instagram: https://www.instagram.com/the_rare_life/ Ep. 39: Inclusive Children’s Books INSERT LINK Gary Gigantic Dream by Dr. Nicole Julia: https://amzn.to/35qAXyR When Charley Met Emma by Amy Webb: https://amzn.to/2Lz8z6n Friendship Circle: https://www.friendshipcircle.org/get-involved/families/ LED lights for wheels on wheelchair: https://amzn.to/35jzvOq | |||
| 03 Sep 2020 | 14: The Story of Miller | 00:48:16 | |
Miller is “joy personified”, very social, and loving. But that isn’t to say there aren’t major challenges that come along with having a child with Angelman Syndrome. Their number one challenge is Miller’s non-verbalism. He also sleeps 2-3 hours per 24-hour period and can even go days without sleep, largely because of his hyperactivity, and he also is prone to having seizures. In this conversation, Candace and Shawn share these challenges and solutions they’ve discovered in the course of his 8 years of life. Candace shares her journey in finding Miller’s diagnosis at almost 2 years old whilst going through a divorce from his bio-dad, and Shawn’s experience in entering their lives and being totally and completely accepting of Miller and his differences. We also talk about the prospect of curing Angelman syndrome, their choice to call Miller “disabled” instead of “special needs”, and the isolation that comes with having a child that has differences and challenges that few understand. ---- Mini-doc about Miller and family: https://www.youtube.com/watch?v=9iQLAHobfAU Donate to FAST, and help fund a cure here: https://cureangelman.org/ Learn more about resources for children with Angelman here: https://www.angelman.org/ --- For images, comments, the full transcript and more, visit the website: https://therarelifepodcast.com/ TRANSCRIPT: Shawn 0:00 "And then as soon as you say chromosomes, they're like Oh, so like Down syndrome. And I'm like No." Madeline Cheney 0:08 Hi, you're listening to The Rare Life. I'm your host Madeline Cheney. Now that we are into September, we have a new question of the month. This question of the month is a little more complex. It is: What is your favorite toy/tool/supply for (fill in the blank). This could be for dwarfism, hearing loss, vision loss, autism, low muscle tone, trachs, etc, etc, etc. So when you go to fill out the question, there will be a field that you can fill in to tell us what category your favorite tool, toy, or supply is for. And so I think it'll be really great for us to be able to share what we have learned as far as things that have been helpful. And this will be also a great thing for us to go to, I think, for birthday ideas and Christmas ideas, I'm really excited to see what you guys say. So head over to the website, therarelifepodcast.com both to answer September's question of the month and to look through the answers from last month. This is Episode 14: The story of Miller. This is our first ever episode with both parents in the interview, and I really loved it. It was great to have both perspectives and I'm hoping to be able to have that be more of the norm now so that this truly can be a podcast for both parents of children with rare conditions. Today we have Candace and Shawn talking about their son Miller. They talk about the challenges that come with having an eight year old with Angelman syndrome, like navigating non-verbalism, sleep issues, and seizures. They also talk about the prospect of a cure for Angelman syndrome, and what that would mean for them and Miller. Candace also shares about receiving Miller's diagnosis when he was almost two years old and while she was going through a divorce. Candace and Shawn have five children between them, Miller being the youngest. Shawn teaches English as a second language and he also has a background in film.... | |||
| 20 Aug 2020 | 12: 3 Fun Ways to Facilitate Language Development w/ Hearing Specialist Angie | 00:31:14 | |
Learn why these three everyday activities help children develop language and discover fun tips to tweak them in order to enrich your child’s access to language even more. Hearing specialist Angie works as an in-home therapist for the Utah School for the Deaf with the mission to give children with hearing loss access to language. Turns out the three most powerful tools are ones that apply to all children, typically hearing or not. Contact form for Season 1 takeaway: https://therarelifepodcast.com/contact For images, comments, full transcript, and more, visit the website: https://therarelifepodcast.com/show-notes/ep-12-3-fun-ways-facilitate-language-development-w-hearing-specialist-angie Books: Board Books by Sandra Boynton: https://amzn.to/38UEQfT Dr. Suess 4 Board Book Bundle: https://amzn.to/2Oo71KF Brown Bear by Eric Carl: https://amzn.to/2OrAeo5 The Very Busy Spider by Eric Carl: https://amzn.to/2OlqhbM From Head to Toe by Eric Carl: https://amzn.to/3gZH5kW Flap books: Where’s Spot? By Eric Hill: https://amzn.to/3fplyBE Dear Zoo by Rod Campbell: https://amzn.to/2CDe0gk Toys: Cargo Truck by Plan Toys: https://amzn.to/38UDS3j Baby Dolls by Melissa and Doug: https://amzn.to/3eqI7EJ Plastic balls, set of 50: https://amzn.to/3evqWC7 Vehicle Puzzles by Melissa and Doug: https://amzn.to/304A4Za Super Simple Songs (via YouTube): https://www.youtube.com/user/SuperSimpleSongs (also can be found on Spotify) Lego Duplos: https://amzn.to/2Zu5zNm Mr. Potato Head: https://amzn.to/3gZHtzU Building Blocks by Melissa and Doug: https://amzn.to/3fv0ud4 Plastic Animals: https://amzn.to/3h0evjf Wooden sensory balls by Plan Toys: https://amzn.to/32jJJxI TRANSCRIPT: Angie You'll always have that next milestone in mind. Celebrate the milestones that they're doing now and don't give up. Madeline Cheney Hi, you're listening to the rare life. I'm your host Madeline Cheney. And today we have episode 12. A little side note before we jump into the episode, I would like to invite all my listeners--special needs parents and others included--to share what you've thought of Season 1 so far and your favorite takeaway, which might be something you've been able to implement and had success with, a thought from a parent that resonated with you, or any kind of meaningful experience you've had with the episodes you've listened to in Season 1. Please do that in the form of a review on either iTunes or if you are not an iTunes listener, you can send it in through the contact form on my website, therarelifepodcast.com and I will put a link to that in the show notes... --- For the full transcript, visit the website. | |||
| 13 Feb 2025 | 180: Does Disability Parenting Ever Get Easier? Survival Mode, Burnout Mode, and Beyond w/ Erica Stearns and Alyssa Nutile | 00:59:30 | |
The age old question: Does this life ever get easier? And if so, when? Just as you might expect, the answer isn’t quite cut and dry, but in this episode, I’m joined by Erica Stearns and Alyssa Nutile to sort through this complex question. Using their Caregiver Continuum framework, they offer a way for you to orient yourself and gain footing as a disability parent, even if life doesn’t always feel like it’s getting easier. If you’ve been feeling lost and overwhelmed in this parenting journey, this episode is here to give you an anchor point. And on February 14, we’re launching our 2nd Annual Friends and Family Fundraiser! We understand that this community is overworked and under-resourced, so we’re not asking for your funds, only that you share this fundraiser with your friends, family, and community that may want to contribute. Thank you so much! We couldn’t do this without you!
Links: Ask your community to donate to our Friends and Family Fundraiser between Feb 14-Feb 28! Or ask them to donate via Venmo @the_rare_life! https://venmo.com/code?user_id=4224512098830319954&created=1739551472.105737&printed=1 Listen to Ep 170 all about hospitalizations. Listen to Ep 54 on Erica’s perspective as a disabled adult. Hear Alyssa’s other episodes: 179: Exhaustion, 171: Financial Strain, 140: Alyssa’s Story,125: Travel w/ Disabled Kids Read more 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! | |||
| 04 Nov 2021 | 71: Confessions of a NICU Nurse w/ Sam Keirsey, RN BSN | 00:44:31 | |
NICU nurses do what we just can’t do for our babies—and that in and of itself is magical and special and makes me over-the-moon grateful whenever I think about it. And while I’m grateful for all nurses that care for my son, there are certainly nurses that are better at their jobs than others. Better at loving, better at caring, better at making the family’s experience as meaningful and positive as possible. Sam Keirsey is one of those such exceptional nurses. In this episode, she shares some of her lows and highs, both of which are dripping with love for the babies and families she’s served. She’s held babies as they passed away when parents couldn’t make it in time, and she’s attended birthday parties of thriving NICU grads. With all the ups and downs, she insists that her job loving these babies is full of privilege and transformation. Links: Support the podcast with a small, one-time donation. Much thanks! Ep. 26: The NICU Experience, a solo episode. Ep. 11: Embracing Your Therapy and Medical Tribe w/ Kari Harbath Ep. 67: What Your Child’s Doctors Want You to Know but Don’t Tell You w/ Dr. Dominic Moore Answer theQuestion of the Month. Read Sam’s lightning round with practical NICU questions. Follow me on Instagram @the_rare_life to watch the live Q and A with Sam. | |||
| 11 Nov 2021 | 72: Season 4 Finale | 00:24:53 | |
Another awesome season come and gone! This episode is in celebration and appreciation of the meaningful episodes, guests, and listeners of season 4. In this episode, I share a few behind-the-scenes of the season (with an exciting update!) and reminisce as we listen to the sixteen episodes condensed into a two-minute segment. I also share and respond to three audio submissions from parent-listeners as they speak of the impact the podcast has had on them, and their favorite episodes of season 4. Links: Pitch in on the group gift for our dedicated interns. Ep. 67: What Your Child’s Doctors Want You to Know but Don’t Tell You w/Dr. Dominic Moore Ep. 70: Accessibility and Ableism w/ Vanessa McLeod Follow Jessica on Instagram. Follow Lexie on Instagram. Follow Alyssa on Instagram. Follow meon Instagram. | |||
| 09 Sep 2021 | 63: Medical Bills and Expenses w/ Gina Pola-Money | 00:40:37 | |
Figuring out financial assistance and insurance was one of the most difficult things Gina faced after she was widowed with two young medically-complex sons. After months of back-and-forth, she was finally able to secure the life-sustaining equipment her children required and deserved. The difficulty in the system inspired her to join an organization dedicated to helping families like ours navigate the medical-financial world. She recently retired after 31 years in the realm. In this episode, Gina opens up about how difficult the financial battles were, and gives us tons of ideas and resources to give our children the care they deserve. Links: Medical Home Portal (can search resources in your state. We talked about this one a lot) Parent Center Hub (to find your state’s version of the Utah Parent Center) Family Voices(to find State and local resource centers) Medicaid Waivers (to find Medicaid Waivers by state - search 1915 (c) in the filter) Children with Special Health Care Needs program (also referred to as Title 5 in episode, and includes Technology Dependent Waiver mentioned in episode) Rare disease financial assistance program (may help with medical needs including respite) UnitedHealthcare Children’s Foundation (can receive grants for costs not covered by insurance up to $5000) Angel’s Hands Foundation (non-profit in Utah) Ep. 24: Disability Advocacy w/ Jenny McLelland (great episode about affecting change in coverage policies) | |||
| 23 Feb 2023 | 115: Melanie Dimmitt’s Story | a Diagnosis Delivered in Bite Sizes + How It Started Vs. How It’s Going | 00:51:19 | |
Today, we have a very special guest, Melanie Dimmitt. Melanie’s son Arlo has cerebral palsy, which isn’t a rare disease, but so many listeners reached out to recommend Melanie’s book Special to me. After reading her journey of coming to terms with her son’s diagnosis and navigating her new life of medically-complex parenting, I knew we had to talk to her. Before Melanie received her son’s diagnosis, she was a little terrified of having a child with a disability. It wasn’t just that she was afraid of how hard it would be, but that she would miss out of so many parts of parenting and family life. But as she soon found out, while parenting a child with disabilities can bring significant challenges, it also brings extreme joy. In today’s episode, Melanie shares the story of how her son Arlo was diagnosed with cerebral palsy, the way she viewed disability before Arlo, and how her view of parenting and raising a child with a disability has shifted since his diagnosis (it’s drastic!). She also explains how she wrote her book Special. to help rebrand disability parenting and offer support and encouragement for new parents who have found themselves in the same shoes as Melanie. This conversation was so encouraging and uplifting. You’re not going to want to miss it! Links: Learn more about our generous sponsor Moog Medical’s Infinity Feeding Pump. Get your copy of The Blend Magazine. Order a copy of Special. By Melanie Dimmit. Check out Kelle Hampton’s book, Bloom. You can find out more about the Upsee Harness here. Follow Melanie on Instagram. Follow me on Instagram! Donate to the podcast via Buy Me a Coffee. Contact me about sponsoring the podcast. Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions. Access the transcript and download the research articles Hilarie cited on the website here. And if you love this podcast, please leave us a rating or review in your favorite podcast app! | |||
| 18 May 2023 | 127: Season 7 Finale + 3 Year Anniversary | How This Podcast Has Changed My Life w/ Juston Cheney | 01:14:44 | |
It’s the very last episode of Season 7! We have clips from every episode this season, listener take-aways, and a very special guest: my husband Juston. This finale is a little different from seasons past because we’re not just celebrating another season, it’s also the third anniversary of the podcast. To honor that milestone, I’m answering a ton of questions with Juston from this community about what it’s like behind the scenes, how I plan and run the podcast, and how I handle the sometimes heavy topics and stories that I bring to you all week after week. Not going to lie, this last season and planning for Season 8 have been a little tougher than previous seasons. But this podcast is a labor of love. It’s for all of us: those who wished we had something like this when our children first received their diagnosis and the families who will come after us who can hopefully find space and hope here, instead of feeling scared and alone. And my goal for the future is that we share this podcast far and wide so everyone who needs it will have access. Finally, make sure you catch our exciting announcement about ways you can connect with other listeners over the summer! If you’ve ever wanted to chat about the topics we cover each week, you’re in luck! Thank you for being here these last three years, and I feel so honored to create even more episodes for you next season.
Links: Fill out our contact form to be added to our email list for Discussion Groups! Listen to Ep 114 about grieving intellectual disability with Marci Dunning. Listen to Ep 124 about living in survival mode with Suzy Boubion. Check out Ep 77: To Those Who Cannot Say, “I Wouldn’t Have Them Any Other Way” one of my favorites. Listen to Ep 19 and Ep 20 with Katie Peterson about her daughter’s terminal diagnosis and anticipatory grief. Connect with Rebekah, Andie, and Emily! Follow me on Instagram! Donate to the podcast via Buy Me a Coffee. Contact me about sponsoring the podcast. 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! | |||
| 30 Nov 2023 | Isolating at Home During Holiday Events to Avoid Illness w/ Amanda Griffith-Atkins [REPLAY] | 00:43:27 | |
No one wants to spend the holidays feeling isolated or left out, but the reality for parents of medically complex/disabled children is that we sometimes have to skip events and gatherings for the safety of our kids. On top of that, we’re the ones stuck making the decision whether to stay home or go out, requesting accommodations and assurances to protect our kids, and trying to decipher if we’re “overreacting” out of anxiety or just being reasonably careful. In today’s episode, Amanda Griffith-Atkins and I discuss how to manage and interpret anxious feelings you might be having around the decision to attend a holiday gathering and how to set realistic parameters to help you make that decision. We also share listener feedback and suggestions about how other parents made their decisions and how to approach uncomfortable conversations you might run into when declining invitations to holiday events. We’re here to validate whatever decision you make for your family because we know how fraught the process can be, but also how frightening it is to feel like you might put your child in a risky health situation. Whatever you choose, we want to help you do it without guilt and with as little anxiety as possible. Thank you to all the parents who shared their experiences about making these decisions! You all make this podcast possible! Links: Listen to Amanda’s other episodes on The Rare Life: Ep 135: How Our Careers are Affected, Ep 132: Self-Care, Ep 131: Chronic Stress, Ep 130: Anticipatory Grief, Ep 99: Family Planning, Ep 85: Disability Identity, & Ep 81: Health Anxiety. Get a copy of Brené Brown’s book “The Gifts of Imperfection.” Follow Amanda Griffith-Atkins on Instagram @amanda.griffith.atkins! 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! 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! | |||
| 03 Mar 2022 | 81: Health Anxiety w/ Amanda Griffith-Atkins, LMFT | 00:54:22 | |
So many of us have experienced trauma related to our children’s health and safety. So, it’s no wonder that we get thrown into a frenzy and our adrenaline pumps anytime our child gets sick or seems off in some way. Our bodies anticipate danger and additional traumatic events even if we logically know they are safe, or we don’t have enough information to conclude anything yet, or that situations are different now. In this episode, rare mom and LMFT Amanda Griffith-Atkins and I discuss ways that we have experienced health anxiety as well as what is happening on a psychological level. We also talk about the similar stress-response we experience in anticipation for specialist appointments. She shares ways we can cope with these trauma responses and teaches us to give ourselves generous helpings of self-compassion. Links: Check out our sponsor Aeroflow Urology for incontinence supplies. Follow Amanda’s Instagram account. Check out Amanda’s therapist directory. Follow me on Instagram. Check out our sponsor BetterHelp for online licensed therapy. | |||
| 29 Apr 2021 | 45: The Story of Emery | 00:31:54 | |
Four-year-old Emery has a slew of diagnoses under the umbrella diagnosis of Rubinstein-Taybi syndrome; Almost every one of her systems are impacted and require specialists and therapies. When she was born, Anna and her husband Justen were put under enormous strain—none of their family or friends could give them any guidance or insight into how to parent a medically-complex child. They were faced with countless appointments, tube feedings, and perplexing medical issues, all while being extremely sleep-deprived—Emery frequently wakes up at night due to pain. In this episode, Anna and I chat about the shift that occurred in her social circles after Emery’s arrival. She shares how she and Justen quickly became aware of their flaws and had to address them to withstand the constant stress. Anna also opens up about how the ways that Emery has made her a better person overall. Links: Our Sponsor, BetterHelp Counseling: https://www.betterhelp.com/therarelife Anna on Instagram: https://www.instagram.com/mothering_rare/ Madeline on Instagram: https://www.instagram.com/the_rare_life/ | |||
| 03 Aug 2023 | 128: Season 8 Kickoff | a New Theme, Sneak Peeks of Brand-new Episodes + a 9-Month Secret Revealed w/ Brittany Steitz | 00:26:48 | |
We’re kicking off another season (number 8!!), and we’re coming in hot with a super exciting update about The Rare Life. Brittany Steitz joins me as we share about a major update that we’ve been working on for NINE MONTHS now, and it’s truly an honor to share it with all of you. As with each kickoff episode, I’m also sharing a little glimpse into the topics we’re diving into this season (we’ve got some heavy ones, but we’re balancing it out with content that’ll make these tough topics easier to digest), the season’s theme, and snippets of the first four episodes. Plus, a reminder that the discussion groups are here to stay! You all seem to love them so much, and we’re so excited to be able to offer a space for you to meet and form relationships with over parents of disabled and medically complex kiddos. Meetings will be held every other Tuesday, with two times to choose from, with one group meeting at 8pm CST and one at 8pm PST. I’m so excited about this new season. Can’t wait to dive in with you! Links: Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! Follow me on Instagram! 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! | |||
| 07 Mar 2024 | 151: Fostering Friendships with Other Disability Parents w/ Kate Livingstone and Kari Harbath | 00:52:47 | |
We all need friends... but not just any friends. We need friends who just get it and don’t need us to explain every little aspect of our life to understand. In short, we need friends who are also parents to disabled and medically complex children. But how do we find and make those friends? Plus, we talk about how sometimes you can make these friendships on the internet and how some of your best friends can be people you’ve never even met IRL. 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 assistance in working with your insurance company to provide their top-tier nutrition to your tube-fed child! Listen to Kari’s previous episodes on The Rare Life: Ep 123 on using the term “special needs,” Ep 10 on Sloan’s story, and Ep 11 on embracing your medical tribe. Follow Kari on Instagram @kariharbath! Follow Kate on Instagram @klovestone! 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! | |||
| 06 Jul 2023 | Should A Child’s Disability be Part of Their Parent’s Identity? w/ Author Emily Ladau and Amanda Griffith-Atkins, LMFT (Rebroadcast) | 00:53:27 | |
Like most other parents, my sense of identity forever changed with the arrival of my disabled child. And in many ways, it’s helped me to embrace (at least on good days!) a lifestyle I used to resent. But I’ve noticed a pushback from the disability community in claiming our child’s disabilities as part of our own identities. So, of course, we had to examine this controversial and intimate topic with the best of the best. In this conversation with famed disability activist, speaker, and author of Demystifying Disability, Emily Ladau and Amanda Griffith-Atkins guest from Ep. 81 and mom to a disabled teen, we tackle questions like: Is it ok for us as parents to find identity in our children’s disabilities? If so, where is the line? IS there a line? How can I respect both my child’s lived experience and my own? Can I share those experiences on social media? How can parents and disabled people soften towards each other and put down the proverbial weapons? *This is a rebroadcast of one of my favorite episodes of The Rare Life for you to listen to while we work on production for season 8, coming in August! If you’d like to discuss this episode with other members of The Rare Life community, we’ll be holding three different meetings run by our amazing group facilitators every Tuesday at 8pm in PST/CST/EST. Fill out our contact form to get the Zoom link each week!* Links: Sign up to get an invitation for our community discussions every Tuesday during the off-season! Purchase Demystifying Disability by Emily Ladau via Penguin House or Amazon. Listen to The Accessible Stall podcast Follow Emily on Instagram. Follow Amanda on Instagram. Follow Madeline on Instagram. Listen to Ep. 81: Health Anxiety w/ Amanda Griffith-Atkins, LMFT Listen to Ep. 54: Disabled Adult Perspective w/ Erica Stearns Listen to Ep. 77: To Those Who Cannot Say, “I Wouldn’t Have them Any Other Way” Join the Facebook group Parents of Children with Rare Conditions. Donate to the podcast via Buy Me a Coffee. Contact me about sponsoring the podcast. Follow the Facebook page. 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! | |||
| 12 Sep 2024 | 166: Nonspeaking Child | Longing to Access Their Inner World + Give Them Medical Autonomy w/ Suzi Boubion | 00:57:01 | |
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! | |||
| 07 Dec 2023 | When Your Child is Inpatient at Hospital During Holidays or Special Events w/ Amanda Griffith-Atkins [REPLAY] | 00:45:18 | |
There’s not much that feels worse than getting stuck in a hospital during the holiday season or having to miss a special celebration due to appointments or illnesses. Of course, there’s the trauma of being in the hospital again, but it’s also lonely, isolating, and demoralizing to feel like everyone gets to celebrate except for your family. You might feel pressure to experience the holiday early or find ways to celebrate in the hospital – or you might be too exhausted and just skip the event altogether. Whichever way your family chooses to navigate these difficult circumstances is totally valid, and in this episode, Amanda and I share experiences from listeners on how they make it through these moments. We cover feedback from how awful it feels to be inpatient during big events to practical tips to celebrate when you’re in the hospital to encouragement on handling these tough situations in whatever way is easiest and safest for you and your family. A big, big thank you to all our listeners who sent in tips, clips, and feelings to share with everyone. We used all of your feedback to create this episode, and we are so grateful! Links: Listen to Amanda’s other episodes on The Rare Life: Ep 135: How Our Careers are Affected, Ep 132: Self-Care, Ep 131: Chronic Stress, Ep 130: Anticipatory Grief, Ep 109: Isolating to Avoid Illness, Ep 108: Why the Holidays Suck, Ep 99: Family Planning, Ep 85: Disability Identity, & Ep 81: Health Anxiety. Visit Icing Smiles for custom cakes when in the hospital. Visit the Confetti Foundation for birthday boxes for hospitalized children. Visit Little Wishes, a foundation that brings special moments to children who are inpatient. Follow Amanda Griffith-Atkins on Instagram @amanda.griffith.atkins! 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! 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! | |||
| 12 Aug 2021 | 59: Educational Advocacy + IEPs w/ Catherine Whitcher, M.Ed | 00:45:24 | |
There are many challenging things about parenting a child with a disability. And among them, IEP meetings are one of the most daunting—they’re full of legal jargon and confusing processes. Catherine Whitcher has been guiding parents and schools in creating IEPs that our children reach their full potential for over twenty years, and in this episode, she gives us some of her best tips. Links: Find Catherine and her podcast here: Website: www.catherinewhitcher.com Facebook: www.facebook.com/catherinewhitcher Instagram: www.instagram.com/catherinewhitcher Podcast: www.catherinewhitcher.com/podcast YouTube: www.youtube.com/catherinewhitcher Find Madeline on Instagram and Facebook. You can also listen on my website, as well as see photos for parent episodes, request transcripts, make comments, answer the Question of the Month, and contact me. | |||
| 27 Feb 2024 | Mini Episode: A Sprint to the Finish for Our Family and Friends Fundraiser! | 00:10:32 | |
Only two days left in the Family and Friends fundraiser, and while we’re overjoyed and awed at how successful this fundraiser has been, we’re still 10% away from our goal! If you haven’t joined in on this fundraiser yet, it’s not too late. You’d be amazed at what you can accomplish in 48 hours, so will you join us for this final sprint to the finish? Get more info at https://therarelife.org/fundraiser. Thank you so much, friends!
Links: Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come! 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. And if you love this podcast, please leave us a rating or review in your favorite podcast app! | |||
| 27 Apr 2023 | 124: Suzy’s Story | Brain Injury, the Exhaustion of Living in Survival Mode, + Wondering If This Is the End | 01:00:13 | |
Life as parents of medically complex children is full of extremes: intense love for our children, deep exhaustion from handling their medical care, incredible resilience to keep going, and extreme anguish that comes with having to make decisions that none of us can even fathom until we find ourselves in that position. Today’s episode with Suzy Boubion is so raw and so tender as we discuss some of those impossible choices we face as parents to medically complex children. She tells the story of her son Oliver’s brain injury during birth, how the experience of raising a medically complex child changed her relationships, including her marriage, and how the exhaustion of living in survival mode for years takes a toll on your mind and body. And toward the end of the episode, we also touch on the topic of child loss and how Suzy is navigating her emotions and decisions that come along with that possibility for her own family. If that’s a sensitive topic for you, please listen with care.
Links: Listen to Ep 33 of The Rare Life with palliative care worker Orley Bills. Follow Suzy on Instagram! Follow me on Instagram! Donate to the podcast via Buy Me a Coffee. Contact me about sponsoring the podcast. 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! | |||
| 16 Dec 2021 | Announcement and Recommended Episode #5 | 00:02:23 | |
For those of you who haven’t heard, we are currently BETWEEN seasons 4 and 5, with a longer break than usual—7 weeks to be exact! I’m using this time to catch up in episode production compassionately and intentionally. I’ll be back in full force with season 5 on January 6th. But this break is no reason to stop consuming great episodes! I have 72 awesome episodes at your disposal. And each week, I’ll recommend an episode that I think you’ll enjoy. Each of them are under-listened gems that you may have missed, but will be glad to catch. I’m so excited to re-share them with you! This week’s recommended episode is Ep. 33: It’s OK to be Angry, with our local children’s hospital’s palliative care team member Orley Bills. In this episode, we talk about the extremely difficult decisions we must make for our children, and that all emotions are ok. | |||
| 07 Sep 2023 | 133: Bek’s Story | Solo Medical Parenting, 13 Years of Living in Survival Mode + Grieving the Children She Dreamed of Having | 00:54:45 | |
Like many of us, the diagnosis of a genetic disease for her son came as a surprise to Bek. One moment she had a “typical” pregnancy and the next minute, she had a medically complex baby. That was 13 years ago, and since then, Bek’s been navigating how to parent a medically complex child on her own as a single mother. In this episode, she shares with us just how lonely and alienating parts of her journey have felt, both as a single mother and as the mother of a medically complex child whose needs are very different than many of his peers. Bek also shares how her life and the way she must care for her son have changed as he’s gotten older. Bek’s speaks so vulnerably, and I can guarantee that there’s something here for everyone, even if your life circumstances differ. I can’t wait for you to hear her story. And a big thanks to this week’s sponsor, GeneDx. Check them out if you're in the process of finding a genetic diagnosis for someone in your life. Links: Check out GeneDx and see all their options for genetic testing! Listen to Ep 130 on Anticipatory Grief Follow Bek on Instagram @bek_bradley! 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! | |||
| 13 Apr 2023 | 122: 5 (Surprising) Things Parents Want Special Ed. Professionals to Know w/ Tiffany Goodchild | 01:04:18 | |
Parenting a child with medical complexity or disability often means learning a ton of new skills—and new systems—often in a very short period. Making that process more difficult is the fact that many of the individuals working in those systems, like special education professionals and therapists, aren’t actually parents of disabled children if they even have children at all. And because of this, communication between both sides can be... let’s just say difficult at times. Here to help bridge the gap is a former Sp. Ed. professional and mom to a disabled son, Tiffany Goodchild. In today’s episode, Tiffany shares all the things she wishes she had known as a Sp. Ed. professional before she had her son. She shares difficult experiences that she’s had navigating the Sp. Ed. system, even after having worked in it for years, and it’s her goal to help educate other special education professionals to make the special education system better for both professionals and kids. To this end, we’ve made digital and printable flyers that you can send to the Sp. Ed. Professionals in your life. We’d love for you to send this episode to anyone who works in special education so we can make the system work better for everyone. Get a copy of the flyers here. Finally, an extra special thanks to Trexo for sponsoring this episode! Check out their website and Instagram to see their amazing robotic devices in action! Links: Visit Trexo’s website to get more information about their assistive devices. Follow Trexo on Instagram to see their products in action. Send this flyer to your Sp. Ed. professionals! Printable version or digital. Get a copy of No Such Thing as Normal by Megan DeJarnett. Get a copy of Demystifying Disability by Emily Ladau. Listen to Ep. 59 about IEPs with Catherine Whitcher, M. Ed. Listen to Ep. 68: Dipping My Toes into Educational Advocacy. Check out the Kourageous Karter Foundation. Follow Tiffany on Instagram! Follow me on Instagram! Donate to the podcast via Buy Me a Coffee. Contact me about sponsoring the podcast. 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! | |||
| 10 Sep 2020 | 15: Communicating w/ a Nonverbal Child | 00:24:39 | |
Ever feel totally overwhelmed communicating with a non-verbal child? Parents Candace and Shawn have been there. In this special topic episode, they share things they’ve learned along their 8-year journey with their son Miller. This episode has lessons to be learned from for parents of every kind, but especially those that long to improve their communication with children for whom spoken language just isn’t an option. Their advice can be summed up in 3 aspects: 1. Be creative. 2. Be flexible. 3. Be persistent Etsy PECS communication systems: General PECS etsy page: https://www.etsy.com/search?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=pecs+cards&ref=return_to_search&organic_search_click=1&explicit=1&q=pecs+cards Printable version ($5): Portable device ($17+):https://www.etsy.com/listing/766745671/aac-portable-device-waterproof?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=pecs&ref=sr_gallery-1-2&organic_search_click=1 For pictures, comments, and the full transcript, visit the website: https://therarelifepodcast.com/show-notes/ep-15-communicating-w-nonverbal-child TRANSCRIPT: Candace 0:00 Madeline Cheney 0:13 Welcome back, Candace and Shawn. Candace 1:06 Madeline Cheney 1:08 | |||
| 07 Oct 2021 | 67: What Your Child’s Doctors Want You to Know, But Don’t Tell You w/ Dr. Dominic Moore, MD | 00:40:43 | |
Although we often only see them for a brief 20-minutes at a time, our children’s doctors play a huge part in our children’s health and well-being. And depending on their bedside manner, we assume we know how much they care. In this episode with Dr. Dominic Moore, chief of palliative care at the local children’s hospital, gives us insights into how much our children’s providers really care. He shares the pain and grief they feel when things take a turn for the worse for our children, and the triumph they experience when the opposite occurs. He also gives us much-needed reassurances in our role as our children’s caregivers. Links: Answer the Question of The Month. Atypical Truth podcast. The Lower Lights music group on Spotify. Follow Madeline on Instagram @the_rare_life Join the Facebook group Parents of Children with Rare Conditions. Follow The Rare Life on Facebook. Check out our appointment day merch! Support the show and become a Patreon. | |||
| 05 Oct 2023 | 137: Life After Child Loss | What is Grief, How Does It Show Up, and What Can We Do About It? w/ Cole Imperi + Leah Deason | 00:59:41 | |
Not all of us have or will experience the loss of a child, but we ALL have to navigate some type of grief and loss in our lives. I know this sounds heavy, but in today’s episode grief expert Cole Imperi and grieving mother Leah Deason and I have a frank but honestly kind of soothing conversation about the way grief and loss shape our lives, and how we can move through traumatic moments by understanding and embracing our grief. Even if you don’t feel like you’ve experienced a traumatic loss yet, I think you’ll find something in this conversation for you, because grief is universal, but it doesn’t have to be scary.E Stephens families. in 2021, they lost their sweet grandson Logan en utero to a rare genetic syndrome. This episode is lovingly dedicated to Logan Reid Steitz and to his dear parents Brittany and Matt. Their grief of losing Logan will forever keep him in their hearts.
Links: Listen to our other episodes on child loss, 134: Child Loss 101 and 130: Anticipatory Grief. Visit Cole’s website to read her blog and stay up-to-date with her book launches! Follow Cole on Instagram @imperi. Follow Leah on Instagram @becauseofozzie. 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! | |||
| 14 Mar 2024 | 152: Stephanie’s Story | A Stroke in Utero, Recurring Medical Trauma + No Space To Process It | 00:38:40 | |
Finding out your baby had a life-altering stroke in utero brings shock, heartache, and a whole lot of guilt. But when the medical trauma keeps coming after that initial diagnosis, year after year, hospital visit after hospital visit, there’s rarely time to work through all of those complicated feelings. This episode is so real and honest. You won’t want to miss it. And a big thank you to our sponsor Hibi for making this episode possible! Hibi is an app that helps you organize, manage, and share your child’s medical information. Check them out here! Links: Visit Hibi’s website to download the app! Listen to Ep 77: To Those Who Cannot Say You’d Have Them Any Other Way. Follow Stephanie on Instagram @steph_stanley12! 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! | |||
| 09 May 2024 | 160: Ashley Smith’s Story | Sibling Dynamics, Nontraditional Gender Roles, + Not Knowing What to Grieve | 01:03:04 | |
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! | |||
| 01 Aug 2024 | Summer Mini #10: Finding a New Home + Starting Over | Tiffany’s Catch-Up | 00:19:50 | |
When we last spoke to Tiffany, she was still trying to find something that felt like solid ground after going through a divorce right before the birth of her medically complex daughter. She and her two children were living in a trailer and trying to answer the question: What now? In this catch-up episode, Tiffany shares how much has changed in these last two years, from inter-state moves to buying a new life to finding a balance as a single mother between the unique needs of each of her daughters. Seeing how far Tiffany’s family has come in two years is so heart-warming. 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 Ep 101: Tiffany’s Story and Ep 102: Becoming a Single Medical Mama 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! | |||
| 01 Jun 2023 | Living with Sleep Deprivation w/ Jill Arneson (Rebroadcast) | 00:29:42 | |
There are many reasons we lose sleep as parents of children with disabilities. Maybe our child requires nighttime medical care or monitoring, and we don’t have nighttime nursing. Perhaps we feel guilty for sleeping while they’re not. Or we are unable to sleep while our minds buzz with a never-ending list of tasks of care, of past trauma, and fear of the future. In this episode, Jill shares what keeps her up at night and the things she does to try to get a little more sleep. *This is a rebroadcast of one of my favorite episodes of The Rare Life for you to listen to while we work on production for season 8, coming in August! If you’d like to discuss this episode with other members of The Rare Life community, we’ll be holding three different meetings run by our amazing group facilitators every Tuesday at 8pm in PST/CST/EST. Fill out our contact form to get the Zoom link each week!* Links: Sign up to get an invitation for our community discussions every Tuesday during the off-season! Ep. 25: EMDR Trauma Therapy w/ Rosey S. Ep. 88: Numbing Out w/ Anna Smyth Ep. 87: PTSD + Mental Health w/ Karley Henderson Follow me on Instagram! Donate to the podcast via Buy Me a Coffee. Contact me about sponsoring the podcast. 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! | |||
| 28 Sep 2023 | 136: Bethany’s Story | Trach Life, Calloused to Trauma, + Making Space for Anger | 00:46:59 | |
Having to rely on a medical device for your child’s survival is equal parts frustrating and terrifying. It’s not that we aren’t grateful that the technologies exist to keep our children healthy... but medical devices aren’t fool-proof, and when things go awry, it’s traumatic for everyone involved. In today’s episode, Bethany Beazley shares her experience of receiving her son’s diagnosis and how her family’s life changed in the blink of an eye when her son William was given a tracheotomy shortly after his birth. While William’s trache helped him to breath well most of the time, he had more than one terrifying incident when his trache didn’t function as planned. Bethany explains, in heartfelt detail, the emotional fallout from those moments, and how her perspective of disability has changed through her experience. You won’t want to miss it.
A big thanks to the sponsor for this episode, Functional Formularies!
Links: Visit today’s sponsor Functional Formularies your child’s special dietary needs! Grab a copy of Bethany’s book “William Tries Again.” Follow Bethany on Instagram @joyfulblondie 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 eetings 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! | |||
| 05 May 2022 | 89: Gaslit by Others and Ourselves | 00:35:48 | |
The pain we’ve experienced alongside our disabled children is often gaslit by others. Responses like “Oh, it’s not that bad…” and “At least….” Or “You should be grateful that….” are all forms of toxic positivity. Just like that, our pain and struggle are minimized. But the same can happen internally. When we’re struggling and our inner voice berates with “you’re so weak” and “it’s really not that bad” and “so-and-so has it so much worse than you do.” Both are harmful and both need to stop. Links: Listen to Ep. 25: EMDR Trauma Therapy. Follow me on Instagram. Donate to the podcast via Buy Me a Coffee. Check out our sponsor BetterHelp for online licensed therapy. Reach out about sponsoring an episode https://therarelifepodcast.com/contact | |||
| 24 Jun 2021 | 53: Diagnosis Jealousy w/ Kara Ryska | 00:36:43 | |
Have you ever seen another child and thought, “Man. If only my child had that diagnosis. Things would be so much easier because…”? We have too. It’s a totally ridiculous thing to feel jealousy over, but it’s something our brains do, nonetheless. Whether it’s the plethora of existing research, the resources available, or the name that most people know, there seems to be a lot to envy when it comes to more common diagnoses. In this episode, Kara examines this and other strange things our brains do in response to trauma with her life coach lens. We also conclude that the antidote to this isolating mindset is finding other parents who we can relate with on other levels. Links: Check out Kara’s podcast and coaching program. Follow Kara on Instagram. Join the Facebook group Parents of Children with Rare Conditions. Check out my website for more details about this episode. | |||
| 15 Feb 2024 | 148: The Family + Friends Perspective | What it’s Like to Watch us Navigate Life with Our Medically-Complex Children w/ Kassie Harbath | 01:27:31 | |
Our kids touch the lives of everyone around us, but especially our close family and friends. But we don’t always get to hear that perspective from the outside. So on this episode of The Rare Life, we’ll finally get to hear from those close to us about what it was like to watch us endure trauma, explore parenthood with a medically complex child, and try to figure out the best ways to support us. Kassie Harbath, auntie of Sloan, a little girl with CHARGE syndrome, joins us to sort through all these complex feelings. Also, thanks to the many families and friends who have already donated and sponsored episodes, including the loved ones of Alyssa Nutile, mom of Gemma who has Pyruvate Dehydrogenase Complex Deficiency (PDCD). We couldn’t do it without you!
Links: Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come! Donate to the fundraiser here. Hear the story episodes of the loved ones whose family and friends who shared today: Alyssa Ep 140, Libby Ep 95, Bek Ep 133, Marci Ep 114, Brianna Ep 105, Madhura Ep 117, Suzy Ep 124, Kari: Ep 123, Ep 10, and Ep 11. Listen to Ep 146: The Dad Perspective. Listen to Ep 104: How to Support the Parents of Disabled Children. Read Show Up and Bring Coffee by Megan Amrich. 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. Access the transcript on the website here. | |||
| 12 Oct 2023 | 138: Therapy 101 | Barriers Disability Parents Face + How to Receive This Much-Needed Care w/ Liz Spitzer, PhD | 00:55:38 | |
If you’ve been around in the medically complex world for a minute, you’ve surely heard others talk about therapy. But maybe you’re still asking yourself, “have I been through enough to even need it?” Liz Spitzer, PhD and rare mom herself, is here to reassure everyone that we all deserve care, including therapy, no matter how much or how little we’ve endured comparatively. In Ep 138 of The Rare Life podcast, Liz breaks down the different types of therapy parents and caregivers of medically complex children can benefit from and also how to access those therapies, including acknowledging the many barriers and providing workarounds for those of us who want therapy, but don’t know how to make it fit in our lives. If you’ve been curious about therapy but aren’t sure where to start, this is the episode you need. Also, a big thanks to our sponsors for this episode: The Nettle Families in honor of The Steitz Family, who lost their son Logan during pregnancy to a rare genetic syndrome CDPX1 Links: Check out our affiliate BetterHelp for online licensed therapy. See Amanda Griffith Atkins Directory of therapists who have experience working with parents like us! Check out this list of Cognitive Processing Therapy (CPT) providers. Here's a directory of EMDR therapists! Check out the Postpartum Support International "Mental Health Support for Special Needs and Medically Fragile Parenting" group. Check out Give An Hour’s Rare Caregiver Peer support groups. You can also find therapists on PsychologyToday.com. Learn more about ACT therapy. Listen to Ep 25: EMDR therapy. Read Special by Melanie Dimmitt for her experience with therapy. Follow Liz on Instagram @parent.caregiver.therapy!—her Instagram account 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! 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! | |||
| 29 Feb 2024 | 150: Siblings | Listening + Learning from Glass Children w/ Megan Schneider | 01:03:46 | |
We talk all the time about our disabled children in this space... But what about their non-disabled siblings? In today's episode of The Rare Life, we're going to hear from them directly: about the good, the hard, the unexpected, and about just how much they love their disabled brothers and sisters. We heard from nearly thirty siblings, from toddlers to teens (and even a few adults!) Megan Schneider, a grown-up with a disabled sibling, also joins me to share her own experience and respond to these tender thoughts from some of the other kiddos in our lives. This episode is so raw, so heart-wrenching, and so sweet. You can’t miss it. Also, it's the last day of our Family and Friends fundraiser! Don’t forget to promote your own fundraisers one more time (or start one just for today and see how much you can raise!
Links: Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come! Listen to Ep 142: What If My Child Outlives Me? Listen to Ep 40: Wendy’s Experience. Listen to Ep 47: Siblings with Katie Taylor. Listen to Ep 50: Katherine’s Sibling Experience. Listen to Ep 99: Family Planning. Check out @ourrealrarelife on Instagram! 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. | |||
| 28 Feb 2021 | 36: Rare Disease Day 2021, The Parent-Perspective | 00:42:53 | |
In this special collaborative Rare Disease Day episode, twelve parents come together to share a little about their children with rare conditions. This is a tribute to all children with rare diseases everywhere, and their parents who love them more than life. These twelve moms tell us a bit about their child’s diagnosis, what it was like to find out about it, and what they want the world to know about their child. And its gold. In their 2-4 minute segments, they capture a variety of perspectives and unique situations, but they all have one thing in common; they love their children profoundly. Links: Join the FB group Parents of Children with Rare Conditions: https://www.facebook.com/groups/parentsofrare/permalink/419788272495139/?comment_id=419995795807720&reply_comment_id=420670799073553 FreeArm Tube Feeding Assistant: https://freearmcare.com/ Instagram accounts: Madeline Cheney, host: @the_rare_life Eliza +Lorenza: @chargeonwardandupwards Harper + Morgan: @hustleheartsandhospitals Beau + Kim: @beaus.journey William + Bethany: @joyfulblondie Isaac + Brianna: @brianna.alcox Freeman + Misti: @freearm.tube.feeding.assistant Jade + Phylicia: @shortandsweet.pnw Mauve + Morgan: @mauvevalentina | |||
| 20 May 2021 | 48: Lifting the Curtain | 00:35:24 | |
In celebration of the first birthday of The Rare Life podcast, I share some behind-the-scenes in the creation of the show. I explain what it’s like to run the podcast while also being a stay-at-home mom still very much in the trenches of rare parenting. Per usual, I stay real and include both the amazing and not-so-amazing aspects of it all. I also talk about the purpose of the podcast, what it means to me, and ways you can help me continue to produce powerful episodes of vulnerability and healing.
Help me produce episodes by donating on Patreon here. Check out merch here. Listen to Ep. 25: EMDR. Listen to Still A Part of Us podcast. Listen to Ep. 22: It’s All My Fault. | |||
| 06 Apr 2023 | 121: When Strangers “Just Ask” + How to Handle That w/ Disabled Author James Catchpole | 00:42:14 | |
As parents of medically complex kids, we’ve all been there. We’re at the park or the grocery store with our kid, and someone we don’t know walks up to us and starts asking questions about our child. You might be so put off that you don’t know what to say. Or you might just start saying whatever pops into your head, which can devolve into unintentional oversharing, because we’re often under the impression that it’s rude NOT to answer a question. But if you’ve ever wanted permission to just not answer invasive questions from strangers, this episode is here to validate you. I’m talking with James Catchpole, author and publisher, about his experience as a disabled adult and how he deflects or simply (but politely) refuses to answers questions from strangers about his disability. He also shares about his experience as a disabled child and how his parents were able to set a helpful example for how on how to navigate questions about his disability as he grew older. Whether your child will eventually be able to advocate for themselves or if you as the parent will be their advocate indefinitely, this episode will give you lots to think about when it comes to dealing with uncomfortable and invasive questions about your child’s disability or medical status.
Links: Listening to Ep 100 on Raising Awareness. Get a copy of James’ book “What Happened to You?” Read a collection of parenting essays written by disabled parents (including a chapter by James and his wife Lucy.) See more of James’ work and writing on his website! Follow James on Instagram! Follow me on Instagram! Donate to the podcast via Buy Me a Coffee. Contact me about sponsoring the podcast. 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! | |||
| 13 Jun 2024 | Summer Mini #3: A Close Call, Feelings of Regret + Embracing Second Chances | Suzi’s Catch-Up | 00:18:49 | |
If you’re thinking about traveling with your disabled or medically complex child this summer but you don’t know what you’ll need or how to plan, we’ve got your back! In this episode, we’re sharing the top ten things you need to make traveling just a little easier and lighter. This quick episode will make your planning process so much easier. And for those of you who aren’t feeling the summer travel vibes, we have some affirmations for you too. 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 Ep 127 on traveling with our disabled children. Read our list of Top 5 Travel Carriers! Read the original "10 Must-Haves for Traveling with a Disabled Child” blog post. 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! | |||
| 04 Jul 2024 | Summer Mini #6: The Oddly Specific Things We Grieve as Parents of Medically Complex Kids | 00:19:52 | |
There’s plenty of grief that we expect as parents of medically complex kids... But what about those little pangs that seem to come out of nowhere? In this mini episode, we’re sharing the surprising and often oddly specific things we grieve as parents of medically complex children, from missing out on birthdays to struggling at beach trips. This is one episode that will make you feel SO SEEN. 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! 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! | |||
| 24 Aug 2023 | 131: Chronic Stress + Our Bodies | Ways Our Physical Health Takes the Hit w/ Amanda Griffith-Atkins, LMFT | 00:56:26 | |
Parenting children with medical complexities and rare diseases is incredibly stressful. This isn’t news to any of us who’ve been living this life for a little while. More surprising are all the ways – and there are SO MANY – that stress can show up and cause issues in our physical bodies. From insomnia and exhaustion to weight and body changes to health problems and chronic illnesses, we’re sharing all the ways chronic stress has manifested physically in our bodies in today’s episode. Amanda Griffith-Atkins joins me once again as we discuss the impact on chronic stress and some of the ways that we can try to minimize its effects. We don’t have the solution to every issue chronic stress causes, but we see you and we’re right here with you trying to figure it out for ourselves too. Links: Listen to all of my previous episodes with Amanda: Ep 130: Fear of Child Loss, Ep 99: Family Planning, & Ep 81: Health Anxiety. Listen to Ep 85: Parental Identity When You Have a Disabled Child with Emily Ladau. Read Burnout: The Secret to Unlocking the Stress Cycle by Emily and Amelia Nagoski. Follow Amanda Griffith-Atkins on Instagram @amanda.griffith.atkins. 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! | |||
| 20 Feb 2024 | Mini Episode: An Exciting Update for Our Family and Friends Fundraiser! | 00:12:37 | |
Less than a week into our Family and Friends fundraiser, and we have some super exciting news to share! If you haven’t joined in on this fundraiser yet, we’ve got a list of ways you can get involved, plus some helpful tips to make it all a little easier! Get more info at https://therarelife.org/fundraiser. Thank you so much, friends!
Links: Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come! 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! | |||
| 31 Mar 2022 | 84: Grieving Our Child’s Medical Complexity w/ Carrie M. Holt | 00:42:04 | |
Grief is something that most parents of disabled/medically complex children experience. And as Carrie shares in this episode, it never goes away. Instead, it shifts and evolves. She also explains how difficult it was to process her grief in the early days of her son’s life (15 years ago) when she was in survival mode and offers comfort and advice to those currently in that situation. We discuss what exactly it is that we’re grieving, and how she has helped her son process his own grief. Links: Follow Carrie M. Holt on Instagram. Follow me on Instagram. Check out our sponsor BetterHelp for online licensed therapy. Listen to Take Heart Special Moms podcast. Episodes mentioned: Ep. 20: Anticipatory Grief w/ Katie Peterson Ep. 64: Improvement-Triggered Grief Apply to be a guest on The Rare Life podcast. Find adorable photos of Carrie and Toby on the website. | |||
| 23 Sep 2021 | 65: The Story of Cali | 00:34:17 | |
When Falesha was 37-weeks pregnant, her doctor found a few concerning birth defects in Cali that pointed to a rare syndrome called Pfeiffer Syndrome. From there, it was a flurry of preparation for her arrival. In this episode, Falesha shares how much their lives have changed over the 16 months of her life, and the ways she became an expert of her daughter’s syndrome to help her have the best care possible. Links: Check out photos of Falesha + fam on the website here. Let’s be friends on Instagram! @the_rare_life Follow The Rare Life podcast on Facebook. Follow Falesha on: Instagram, @falesha11 YouTube Channel, https://www.youtube.com/channel/UC-UdvhoZdoYouPL40cue5vg | |||
| 29 Aug 2024 | 164: Jillian’s Story | Medical Mom x 2 and the Saying “Someone Always Has It Worse” | 00:51:45 | |
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! | |||
| 22 Jun 2023 | The Story of Claire (Rebroadcast) | 00:45:55 | |
Although Claire’s medical condition has many characteristics, for Katie and her husband they all pale in comparison to the heart-shattering fact that it is terminal. In this episode, we laugh and we cry as mom Katie shares all about her adrenaline-junky four-year-old daughter Claire, her pregnancy and birth story, and the gut-wrenching moments of learning that their precious newborn would not survive childhood. She also shares ways that she has become a stronger, more gratitude-filled and empathetic person because of Claire and the lethal nature of her diagnosis. Trigger warning concerning childhood death. *This is a rebroadcast of one of my favorite episodes of The Rare Life for you to listen to while we work on production for season 8, coming in August! If you’d like to discuss this episode with other members of The Rare Life community, we’ll be holding three different meetings run by our amazing group facilitators every Tuesday at 8pm in PST/CST/EST. Fill out our contact form to get the Zoom link each week!* Links: Sign up to get an invitation for our community discussions every Tuesday during the off-season! Follow me on Instagram! Donate to the podcast via Buy Me a Coffee. Contact me about sponsoring the podcast. 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! | |||
| 09 Jun 2022 | It’s All My Fault (Rebroadcast) | 00:34:08 | |
Finding out I’m a genetic carrier for my son’s syndrome of CDPX1 was a very tough pill to swallow; and it has a whole slew of implications for my life. It means I caused all of my son’s hugely challenging and life-threatening birth defects. And it also means that each of our children have a 50/50 chance of inheriting the unlucky genes. Listen to find out what it was like to receive this life-changing news and what we’ve decided to do about it. This is a rebroadcast of Ep. 22 of Season 2. Links: The episode that released right after this one Ep. 23: Jenny’s Story. Follow me on Instagram. Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions. Donate to the podcast via Buy Me a Coffee. Check out our appointment day merch. Check out our sponsor BetterHelp for online licensed therapy. | |||
| 30 Sep 2021 | 66: Machine Dependency w/ Falesha Johnson | 00:30:58 | |
Kali relies on her trach and feeding tube for life. And as most parents with children who are dependent on life-sustaining equipment, Falesha both loves and resents it. Our children would not be alive today without them, and yet we still can feel annoyed and resentful towards the hassle and fears they bring. In this fun episode, Falesha advises NICU parents to take training seriously, shares both the how-to and the benefits of traveling with equipment in tow, and laughs at the fact that we as parents are dependent on the machines too, but at more of an emotional level. Links: Listen to Episode 13: Feeding Tubes. BetterHelp, online counseling affiliate link. Let’s be friends on Instagram! @the_rare_life Follow The Rare Life podcast on Facebook. Follow Falesha on: Instagram, @falesha11 YouTube Channel, https://www.youtube.com/channel/UC-UdvhoZdoYouPL40cue5vg | |||
| 18 Aug 2022 | 95: The Parable of the Pain Scale | How Bearing Witness to Our Children’s Suffering Calibrates Our Pain Scales to an Entirely Different Level w/ Libby Holley | 00:45:11 | |
We are often asked to rate our pain on a scale of 1-10 for medical professionals. Sometimes for ourselves, other times for our children. And it is often so hard to know what number to give our pain. In this episode, mom Libby Holley shares how this pain scale can also be used to rate our emotional pain, and the ways it calibrates according to our life experiences. So many of us experience pain on a level we’ve never felt before as we become medical parents. Suddenly, what feels like an 8 for our friend may seem completely trivial—a 2 at best on our own personal pain scale. It can be hard to relate and empathize. Libby offers a perspective shift that allows us to remain connected despite this isolating difference in pain scales. We also discuss the heartbreaking ways we see this exceptional pain tolerance in our children and how important it is to give our pain the gravity it deserves and to seek help. Links: A huge shoutout to our generous sponsor Rifton adaptive equipment! Check out adorable photos of Libby, Lennon, and fam on the website. Follow Libby on Instagram. Follow me on Instagram. Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions. Donate to the podcast via Buy Me a Coffee. Check out our appointment day merch. Check out our affiliate BetterHelp for online licensed therapy. | |||
| 02 Jun 2022 | It’s OK to be Angry w/ Orley Bills, LCSW (Rebroadcast) | 00:37:58 | |
The rollercoaster of emotions that comes along with having a medically complex child is an inherent part of the “job”. Orley Bills, the Harley-loving social worker in the Rainbow Kids Pediatric Palliative Care team, spends his days supporting said parents while their children are hospitalized at Primary Children’s Hospital. Sometimes he does this by utilizing his training as a certified grief counselor and LCSW and helping them sort through the hugely painful emotions that arise. Other times he gives parents a break from the heaviness and just chats about superhero movies. Regardless of the mode, Orley takes his job of supporting parents very seriously. In this episode, Orley shares a few of the gems he’s picked up in the past 13 years in that role. He shares the necessity of creating a care plan to guide us in decision making for our children. We also chat about leaning into the painful emotions instead of stifling them, to cope with them in a healthy way. This is a rebroadcast of episode 33 that was released in Season 2. Links: Follow the episode’s sponsor Carolina Quijada on Instagram. Reach out about becoming a personal (or corporate) sponsor. Follow me on Instagram. Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions. Donate to the podcast via Buy Me a Coffee. Check out our appointment day merch. Check out our sponsor BetterHelp for online licensed therapy. | |||
| 05 Nov 2020 | 21: Giving Back w/ Tara Docekal | 00:33:01 | |
Joining in a cause to uplift and help others in their struggles can be very healing as Tara Docekal, founder of the non-profit organization Mightiest Mamas, knows well. In this episode, Tara inspires us to look beyond our own challenges and trauma to serve others. She shares how a one-time NICU and antepartum care Christmas gifting event turned into the beginning of her cherished Mightiest Mamas organization. She gives super practical advice for those wanting to give back in similar ways. Tara also explains how meaningful it has been to see the impact of their acts of kindness. Answer question of the month: therarelifepodcast.com To donate: hello@mightiestmamas.org Donate items from Amazon list here. More about Mightiest Mamas: http://www.mightiestmamas.org/ Mightiest Mamas FB Page: https://www.facebook.com/mightiestmamas/ | |||
| 19 Dec 2024 | Holiday Mini 3: The Silent Suffering | A Poem Reading + Discussion w/ Kara Berasi | 00:18:05 | |
What 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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| 30 Jan 2025 | 178: Jessica Fein’s Story |Adoption, a Progressive Disease, + The Illusion of Control | 00:56:47 | |
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! | |||
| 10 Jun 2021 | 51: Isolation vs. Connection | 00:22:54 | |
It’s hard to put a finger on what has been the hardest part of Kimball’s medical journey. Watching him suffer will likely remain number one on that list forever. But a close second is the isolation. Having a child with disabilities is so very isolating. With his arrival, it became difficult to relate with my family and friends. We were suddenly worlds apart. And I know I’m not the only one! I’ve heard many parents talk about how lonely the journey can be. But one of my favorite parts of the journey goes right along with the isolation from the world at large and that is connection! Because of being thrust into this “other” category, the deep and often instantaneous connection I’ve experienced with other parents in the same boat has been incredible. In this solo episode, I share my constant battle between the two ends of the same stick and the affect it had on my journey. Links: Join We Are Brave Together community here: https://www.wearebravetogether.com/ Find me on Instagram here: https://www.instagram.com/the_rare_life/ Join the Facebook group for parents of rare here: https://www.facebook.com/groups/parentsofrare | |||
| 06 Jun 2024 | Summer Mini #2: 10 Must-Haves for Traveling with Your Medically Complex Child This Summer | 00:16:33 | |
If you’re thinking about traveling with your disabled or medically complex child this summer but you don’t know what you’ll need or how to plan, we’ve got your back! In this episode, we’re sharing the top ten things you need to make traveling just a little easier and lighter. This quick episode will make your planning process so much easier. And for those of you who aren’t feeling the summer travel vibes, we have some affirmations for you too. 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 Ep 127 on traveling with our disabled children. Read our list of Top 5 Travel Carriers! Read the original "10 Must-Haves for Traveling with a Disabled Child” blog post. 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! | |||
| 26 Jan 2023 | 111: Season 7 Kickoff | 00:15:04 | |
We’re back for another season, and we’re focusing on disabilities and medical complexities again! We’ll cover managing symptoms, helpful organization hacks, trauma-versaries, grief and acceptance for our child’s disabilities, and more. For the last six seasons, we’ve been using the same pattern and order for planning episodes, and I’ve been really comfortable with that structure. BUT I want to give even more parents an opportunity to share their stories and their wisdom, so season 7 is going to flow a little differently as we interview a new guest every episode. In this episode, I’ll give you some details about the busy offseason, more insight into the new season structure, and sneak peeks for the first four episodes of this season. Thanks for joining me for this new season. I’m so excited to dive in with you! Links: Follow me on Instagram! Donate to the podcast via Buy Me a Coffee. Contact me about sponsoring the podcast. 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! | |||
| 21 Jan 2021 | 32: Self-Care w/ Jessica Patay | 00:33:26 | |
You matter. You deserve self-care. What’s yourself-care like right now? Do you make conscience decisions about filling yourself with fulfillment and peace, or are you numbing out in front of the TV before collapsing into bed? Regardless of your current self-care practices (or lack thereof), this episode is for you. Especially as parents of children with extra needs, we merit extra care. In this episode, Jessica differentiates between self-sooth and self-care, and responds to the “I don’t have time” excuse. We chat about some of her favorite forms of self-care like running and deep breathing, and she teaches us about the concept of false guilt. As you’ll hear over and over throughout the episode, the art of self-care is vital. And I promise you won’t regret the time and care dedicated to yourself. Answer January’s question: https://therarelifepodcast.com/ The Calm App: https://www.calm.com/ Marriage 365: https://marriage365.com/ For pictures, comments, question of the month, and more, check out the website: Ep. 32: Self-Care w/ Jessica Patay | The Rare Life (therarelifepodcast.com) | |||
| 22 Nov 2023 | The Holidays + Why They Can Be Tough for Disability Parents w/ Amanda Griffith-Atkins [REPLAY] | 01:37:05 | |
When you have a child with a disability or other medical complexity, the holidays can feel like a minefield, as trauma triggers, anxiety, and grief for what we wish the holidays could have been for our families lurk around every corner. And on top of that, having to manage schedules, special diets, gift expectations, and uncomfortable commentary from friends and family can be emotionally and physically draining. The season often leaves parents of disabled children feeling left out, over-worked –and occasionally– like the celebrations might just be more trouble than they’re worth. In today’s episode, Amanda Griffith-Atkins and I discuss listener feedback and contributions about how complicated the holiday season feels for parents of disabled children, suggestions for how to make the holiday season feel just a little bit more manageable, and how adjusting our expectations has made a big difference for each of our families. Links: Join the Sticker Club and help us produce Season 9 coming in January! Listen to Ep 20: Anticipatory Grief with Katie Peterson. Check out Ep 104: How to Support Parents of Disabled Children. Listen to Ep 99: Family Planning with Amanda-Griffith Atkins. Listen to Ep 132: Self-Care with Amanda-Griffith Atkins. Listen to Amanda’s other episodes on The Rare Life: Ep 135: How Our Careers are Affected, Ep 131: Chronic Stress, Ep 130: Anticipatory Grief, Ep 85: Disability Identity, & Ep 81: Health Anxiety. Thank you to our listeners who sent in recordings: Heather, Maddison, and Lysa! Follow Amanda Griffith-Atkins on Instagram @amanda.griffith.atkins! 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! 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! | |||
| 31 Dec 2020 | 29: Resilient Mindset w/ Claudia Taboada | 00:33:02 | |
Becoming aware of our thoughts and emotions is the first step in developing a resilient mindset. For life-coach and author Claudia Taboada, walking her dog each day was the first step in this life-changing awareness. She was able to process her stressors related to her special-needs son and create solutions to alleviate them. In this episode, Claudia shares her top techniques in creating and nurturing an empowered mindset, a must-have when caring for children with different needs. Claudia’s book Burnout to Unstoppable: https://amzn.to/2GQyXXk Claudia on IG: https://www.instagram.com/badassautismmoma/ Join Burnout to Unstoppable Moms FB group here: https://www.facebook.com/groups/burnouttounstoppable Submit Season 2 takeaways here: https://www.speakpipe.com/therarelife | |||
| 19 May 2022 | 91: Season 5 Finale w/ Special Guest Brittany Steitz | 00:39:33 | |
Hear all the tea on The Rare Life podcast and celebrate the two-year birthday with us in this incredibly fun finale episode. For the first time ever, I am joined by a special guest to celebrate and reflect right along with me —newest TRL team member and my biggest hype woman Brittany Steitz. This episode is a whole lot of fun and a lot longer than typical finale episodes, too! In this episode, we listen a 3-minute audio clip composed of snippets from each of the 20 episodes of Season 5. We listen to recorded voice messages from three listeners and geek out about the impact of the podcast on us personally and on listeners. We also explain the growth happening in the form of the brand new TRL ambassador team and funding opportunities for the podcast. Links: Join the TRL ambassador team Favorite episode of Hilarie and Rebekah Ep 85 w/ Emily Ladau and Amanda Griffith-Atkins Favorite episode of Laurel Ep. 83: Evolution of Faith pt. 1 and Ep. 83 pt. 2 Follow each of us on IG! Me, Brittany, Rebekah, Laurel and Hilarie Ep. 89 sponsored by Brittany Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions. Donate to the podcast via Buy Me a Coffee. Check out our appointment day merch. Check out our sponsor BetterHelp for online licensed therapy. | |||
| 13 Jul 2023 | The Sibling Perspective w/ Katherine Acton (Rebroadcast) | 00:41:05 | |
Katherine never knew a world without her big brother Jonathon. Their relationship has a lot in common with any other run-of-the-mill siblings—they have inside jokes, a whole lot of love, and a bit of resentment. So, why are we talking about Katherine’s experience growing up? Because Jonathon has rare syndrome that hugely affected their home life and every day. In this episode, Katherine shares what it was like for her and gives us the DL on what we can do and be aware of to be the best possible parents to all of our children. *This is a rebroadcast of one of my favorite episodes of The Rare Life for you to listen to while we work on production for season 8, coming in August! If you’d like to discuss this episode with other members of The Rare Life community, we’ll be holding three different meetings run by our amazing group facilitators every Tuesday at 8pm in PST/CST/EST. Fill out our contact form to get the Zoom link each week!* Links: Sign up to get an invitation for our community discussions every Tuesday during the off-season! Ep. 40: Wendy + the Sibling Experience Ep. 47: Siblings w/ Katie Taylor Follow Madeline on Instagram. Join the Facebook group Parents of Children with Rare Conditions. Donate to the podcast via Buy Me a Coffee. Contact me about sponsoring the podcast. Follow the Facebook page. 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! | |||
| 30 Mar 2023 | 120: Alexis’ Story | Epilepsy, Holland, + Suicidal Ideation | 00:50:33 | |
If you’ve been doing this rare or medically complex life for a while, how much do you remember about those early days? Maybe you were still searching for a diagnosis or maybe you’d just gotten one while still dealing with the fog of having a medically fragile infant. Or maybe you’re in that space right now, still coping with the news of a recent diagnosis or traumatic birth. Those early days are so important and so impactful to reflect on, so today, I’m talking to new mom Alexis about her daughter Claire’s recent rare diagnosis, how she’s coping with her new life as the parent of a medically complex infant, and some of the really hard, really dark parts that can come right after receiving a diagnosis for your child. A warning, this episode will discuss some very heavy mental health thoughts, including suicidal ideation, so if that’s not something you’re in a place to hear, that’s okay! Maybe skip this one. And a big thanks to our generous sponsor for this episode, GeneDx! Links: If you’re dealing with suicidal ideation or have had suicidal thoughts, please reach out. Call 988 if you’re in North America or visit the Suicide and Crisis Lifeline to get help. Visit GeneDx on their website for more information on genetic testing, where they’ve made it their mission to get timely diagnostics to families like ours. Read the poem “Welcome to Holland” by Emily Perl Kingsley. Listen to Ep 95: The Parable of the Pain Scale. Listen to Ep 108: The Holiday + Ways to Cope. Listen to Ep 25: On EMDR and Trauma Therapy. Find a licensed therapist in your state who works with parents of disabled or medically complex children on Amanda Griffith-Atkins' therapist directory. Get remote therapy from a licensed professional at BetterHelp. Follow Alexis on Instagram. Follow me on Instagram! Donate to the podcast via Buy Me a Coffee. Contact me about sponsoring the podcast. 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! | |||
| 23 Dec 2021 | Announcement and Recommended Episode #6 | 00:02:50 | |
For those of you who haven’t heard, we are currently BETWEEN seasons 4 and 5, with a longer break than usual—7 weeks to be exact! I’m using this time to catch up in episode production compassionately and intentionally. I’ll be back in full force with season 5 on January 6th. But this break is no reason to stop consuming great episodes! I have 72 awesome episodes at your disposal. And each week, I’ll recommend an episode that I think you’ll enjoy. Each of them are under-listened gems that you may have missed, but will be glad to catch. I’m so excited to re-share them with you! This week’s recommended episode is Ep. 54: Disabled-Adult Perspective with the lovely Erica Stearns. In this heartwarming episode, Erica shares the dos and don’ts of medically complex parenting as she has learned as both a medically complex daughter, and mother to two medically complex children. | |||
| 23 May 2024 | 162: Season 9 Finale | A Season of Growth, Listener Thoughts + Summer Mini-Episodes w/ Alyssa Nutile | 00:47:10 | |
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! | |||
| 20 Jan 2022 | 75: My Journey as an Adoptive and Foster Medical-Mama w/ Sarah Yates | 00:33:33 | |
Over the two years Sarah and her husband Steve have been foster and adoptive parents, they have had to face intense feelings towards those who have harmed their children, and work through intense grief. In this episode, Sarah talks about her grieving process in regards to Zariah, ways she’s changed as a person because of her, and how she’s dealt with the difficult feelings towards her children’s birth parents. She also shares the intensely difficult feelings towards the nurse that caused her daughter’s death, and her desire to someday forgive her. Links: Check out our affiliate partner BetterHelp, an online therapy service. Follow meon Instagram. Follow Sarahon Instagram. | |||
| 29 May 2020 | Preface: Kimball’s Origin Story and a Little More About TRL | 00:31:19 | |
A devastating ultrasound, a misdiagnosis of down syndrome, an incredible birth, and a whole lot of complicated feelings make up Madeline’s entrance into the special needs world. Just listened to the trailer? Come here next. This episode covers a more in-depth road map of the show, and a chance to get to know Madeline as she shares her origin story as Kimball’s mama. --- TRANSCRIPT: (full transcript at https://therarelifepodcast.com/show-notes/preface) Madeline Cheney: "They had to give him an extra dose of sedation because he was being so feisty and trying to grab everything out. Which is really cute to know." Well, hey, you're listening to the preface episode for The Rare Life. I'm so glad that you're listening to this. This is a great episode to get started with before you dive into the meat of the podcast. I'm going to cover a few things. I'll cover: 1. who this podcast is for a little more in depth 2. a bit more about the seasonal structure and a few fun facts about my family and me so you can kind of get to know me a little bit before I dive into all the nitty gritty of my experiences with Kimball and other parents as well. 3. And my origin story as I entered the ranks of special needs motherhood which is code for Kimball's pregnancy and birth, really when we found out that he- his body was not forming correctly. So first of all, with this podcast I keep two groups of people in mind but mainly the first group which is derived from the name of the podcast, parents of children that have rare medical conditions. So this is really who I have in mind while I'm creating episodes and curating different topics for various episodes and different professionals, but it really applies to all parents of children with any kind of special needs or medical conditions or medical complexities. Regardless of how common or rare they are. We talk about rareness, partially because each individual diagnosis when they are rare, are so isolating, and so I mean, special needs parenting is isolating anyway, but it's a new level of isolation. So this is a way for us to band together and create our own big thriving group of everyone who relates with rare. And that brings me to group number two, which I also have in mind, but this is not really created for you, but you can benefit from it. This is for anyone who is curious about what it is like to be a special needs parent. This includes, maybe you have a family member who has a special needs child or a friend with a special needs child. Maybe you just admire special needs parents, which like I don't blame you, because like, we're awesome. Maybe you're a therapist or doctor and you want to hear the other side of the story, you want to learn more about what's on the other side of the mirror. So to all: welcome to The Rare Life. ... You can read the full transcript at https://therarelifepodcast.com/show-notes/preface | |||
| 08 Jul 2021 | 55: Season 3 Finale | 00:16:35 | |
It’s time to celebrate another fantastic season of fantastic episodes! This season was full of gains and setbacks, from the size of our TRL community doubling, to a ridiculous number of last-minute guest cancellations due to hospitalizations. It’s been a rollercoaster for all involved and I’m grateful to all that have supported, including each of my loyal listeners. In this episode, we get to listen to brief clips from each episode of season 3. We also hear from three listeners about what they learned from this season and what episode impacted them the most. Join us in two weeks for season 4’s kickoff episode as I introduce the new theme and we get an extended sneak peek into the first four episodes coming your way. Links: Go catch up with Season 3’s episodes on the website. Let’s be buds on Instagram. Never miss an episode and follow TRL on Facebook. | |||
| 06 May 2021 | 46: Confessions of a Special-Needs Mama w/ Anna Brown | 00:37:16 | |
The parenting experience with a child with medical complexities can feel worlds away from those around us. There are so many aspects that no one knows or sees. In this episode, Anna Brown comes back to share three of her infamous “Confessions of a special-needs mama” that she has a reputation for on Instagram. We unpack three of her—and her followers’—favorites: 1. I am not stronger than you. 2. What happens when it stops being cute? 3. I wish your pity were replaced with empathy. Links: Answer this month’s question: https://therarelifepodcast.com/ Follow Anna on IG: https://www.instagram.com/mothering_rare/ Follow me on IG: https://www.instagram.com/the_rare_life/ | |||
| 11 Jun 2020 | 2: The Story of William | 00:34:25 | |
Alyssa was told her son William would die shortly after birth. He is now 4 years old, and Alyssa shares her incredible birth story, her deep connection with him despite his inability to speak, and the transformation Alyssa has experienced because of William. Alyssa and her perspective on life is totally and completely inspiring. William has several diagnoses and symptoms, some of which are seizures, dysphasia (inability to swallow), hydrocephalus, cutis aplasia, balance issues, vision impairments, developmental delays, and hormonal abnormalities. | |||
| 21 Nov 2024 | 176: Season 10 Finale | A Spicy Season, Sticker Club Tallies, + What’s Coming Next w/ Alyssa Nutile | 00:30:13 | |
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! | |||
| 20 Feb 2025 | 181: Kait’s Story | Fertility Struggles, A Surviving Twin, + “What Could Have Been” | 00:44:28 | |
When Kait Parrish found out she was pregnant with twins, she imagined matching outfits, sibling giggles, and the life she had always dreamed of. Instead, at 24 weeks, she gave birth to two fragile babies fighting for survival in the NICU. Then, two weeks later, she lost one of them. In this raw and deeply personal episode, Kait shares the heartbreak of losing Avery, the terrifying rollercoaster of Addie’s early medical battles, and how her perspective on parenting shifted when she became pregnant again. We also talk about the complexity of raising a medically complex child alongside a non-disabled sibling, and the emotions that come with it all. From NICU trauma to navigating life after loss, Kait’s story is one of resilience, heartbreak, and unexpected love. If you’ve ever felt like your parenting journey didn’t go as planned, you’ll find so much to relate to here. Plus, our 2nd Annual Friends and Family Fundraiser is live! We’re not asking for your funds, only that you share this fundraiser with your friends, family, and community that may want to contribute. Thank you so much! We couldn’t do this without you! And a big thank you to MOOG, our sponsor for this episode!
Links: Help us continue The Rare Life by asking your community to donate to our Friends and Family Fundraiser between Feb 14-Feb 28! Visit MOOG’s website to see the many ways they support families like ours! Fill out our contact form to join upcoming discussion groups! Follow Alyssa and Erica at @caffeinated_caregivers! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions. Access the transcript on the website here. And if you love this podcast, please leave us a rating or review in your favorite podcast app! | |||
| 08 Feb 2024 | 147: Sex + Disability Parenting | All the Ways It Takes a Hit + Ways to Reclaim It w/ Amanda Griffith-Atkins | 00:55:46 | |
If you feel like you’re missing out on sexual intimacy in your life since entering your medically complex or disability parenting journey, you are not alone! We took a poll on Instagram and 90% of respondents said that their sex life had been impacted by medically complex life. The reasons for this impact are endless: no time, no energy, no space, no emotional bandwidth, and the list goes on. So in this episode, we’re diving into specific thoughts and struggles from this incredible Rare Life community on the state of sexual intimacy in their lives. Amanda Griffith-Atkins is once again here to help us sort through the conflicting feelings and causes behind these sex struggles, and she also shares several tips for reclaiming your sex life after disability parenting. This spicy episode is one that soooo many of us can relate to. Don’t miss it! Links: Visit Esther Perel’s website. Learn more about sensate focus here. Listen to Ep 99 on Family Planning. Listen to Ep 131 on Chronic Stress. Listen to Ep 138 on Therapy 101. 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. 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! | |||
| 17 Feb 2022 | 79: Debilitating Guilt + the ‘You Break It, You Fix It’ Mentality w/ Wendy Hair | 00:35:10 | |
When her son was young, Wendy grappled with the crushing feeling that she somehow caused her son’s disabilities and delays. The weight of that guilt and shame was unbearable, and it wasn’t until she saw herself in another mom struggling in similar ways that she discovered self-compassion. This aha moment changed her perspective for the better. Ammon was five years old then, and in the ten years that’s past since that point, she’s developed a much healthier view of her relationship with Ammon and her relationship with guilt. In this episode she shares what that was like for her, and ways that she has been able to rise above the guilt and shame, while also using the guilt she feels to make necessary adjustments to her life. Links: Check out our affiliate BetterHelp’s therapy services. | |||
| 20 Apr 2023 | 123: “Special Needs” + Why Parents Need to Drop the Term w/ Kari Harbath and Disability Activist Hannah Setzer | 01:03:03 | |
**This is the original version. A voiceover version is available on this platform. If you have hearing loss or auditory processing difficulties, or are listening in a noisy car, the voiceover version is here for you to access this awesome conversation! Have you ever given much thought to the terminology we use to describe our medically complex kids (and ourselves)? The words we use might seem inconsequential at first glance, but I’m talking with Kari Harbath (mom to a disabled daughter) and Hannah Setzer (disabled activist), to explain why the terms we use for our kids are really important and set the tone for how disabled children and adults can move about in the world. In this episode, Hannah describes her experience as a disabled child and now a disabled adult and why she prefers the term “disabled” instead of special needs. She and Kari also discuss how they’ve heard the term “special” used in society and why that just isn’t an ideal description for our kids. And I want to add, this conversation isn’t about calling out or shaming anyone! We’re just here to give you another perspective and offer you an alternative to some very popular (but kind of infantilizing) terms often used in wider society. We’re so grateful that you’re here and willing to tackle topics like this with us.
Links: Watch this episode with subtitles on YouTube. Get a copy of Hannah’s book “I’ll Pray for You: and Other Outrageous Things Said to Disabled People.” Get a copy of Demystifying Disability by Emily Ladau. Listen to Ep 85 with Emily Ladau and Amanda Griffith-Atkins on the identity of parents related to their disabled children. Listen to Ep 121: When Strangers “Just Ask” with disabled author James Catchpole. Listen to Episode 10 and Episode 11 to hear Kari’s first episodes on The Rare Life. Follow Hannah on Instagram! Follow Kari (and Sloan) on Instagram! Follow me on Instagram! Donate to the podcast via Buy Me a Coffee. Contact me about sponsoring the podcast. 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! | |||
| 26 Dec 2024 | Holiday Mini 4: 2024 for Medical Parents | Highs and Lows | 00:19:20 | |
What 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! | |||
| 11 Nov 2024 | SC Mini #2 | Behind the Heart of a Listener and Supporter | 00:22:59 | |
Summary: 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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| 10 Oct 2024 | 170: Hospitalizations | Triggers, Shoddy Sleep and Food, + Discharge Hangover w/ Alyssa Nutile and Larisa Bothma | 01:28:04 | |
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! | |||
| 25 Mar 2021 | 40: Wendy + the Sibling Experience | 00:53:15 | |
It felt like Wendy and I were drowning right beside each other in the same stormy water, and I couldn’t save her. Wendy has struggled right along with me since Kimball’s arrival in our family, and it’s something that has improved with time. In this episode, I share all about that as well as what Wendy has taught me along the way. I also tell stories of Wendy’s hysterical schemes with Kimball including her infamous “bro time” and the boarding school she hopes to create for “buddy boys like Kimball” when she grows up. Links: Child Life on Call podcast: https://www.childlifepodcast.com/ Child life on IG: https://www.instagram.com/childlifeoncall/ | |||
| 21 Mar 2024 | 153: Hurtful Things Loved Ones Say and Do | How it Affects Us + What to Do About It w/ Amanda Griffith-Atkins | 01:15:57 | |
Have you ever been in a conversation with someone close to you only to be cut to your core by their offhand commentary about your disabled child, their medical issues, or the life you and your child have? Friend, you are not alone. In Ep 153 of The Rare Life, Amanda Griffith-Atkins, whose sone has Prader-Willis syndrome, joins us to address some of the hurtful comments we've received from those close to us. She gives us some helpful tips for navigating those uncomfortable interactions, mending certain relationships, and how to know when a relationship might not be worth repairing. Because while hurtful words from our loved ones are often grounded in their own unresolved baggage... sometimes, we discover someone's true character, and it can be a relationship ender. This is one episode you won’t want to miss. And a big thank you to our sponsor SupportNow.orgfor making this episode possible! Check out their website to get the exact support you need from you community! Links: Check out SupportNow.org to get the help you need during tough times! Listen to Ep 94 on how our friends and family can support us. Listen to Ep 148 on the family & friend’s perspective. Listen to Ep 101 & Ep 102 to hear Tiffany’s story. Follow Amanda @amanda.griffith.atkins! 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! | |||
| 07 Nov 2024 | 174: A Case Against Silencing Disability Parents on Social Media w/ Alyssa Nutile | 01:40:25 | |
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! 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 | |||
| 11 Jul 2024 | Summer Mini #7: Everything You’ve Ever Wanted to Know About Madeline | 00:13:43 | |
Each week, I share a new episode and guest, but I realized that it’s been a long time since I’ve shared much of me, Madeline, with you. So today, I’m peeling back the curtain today and sharing all sorts of fun (and maybe a few not so fun) facts about me, my life, and my family. I’m sharing what motherhood looks like these days, traits that I do and don’t love about myself, and lots of other lower stakes facts. I’m so grateful for this opportunity to be vulnerable with all of you, and I am so excited to share this episode. 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 Ep 127 on traveling with our disabled children. Read our list of Top 5 Travel Carriers! Read the original "10 Must-Haves for Traveling with a Disabled Child” blog post. 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! | |||
| 16 Jul 2020 | 7: Educating Others About Your Child’s Differences w/ Emily Young | 00:30:16 | |
Emily’s mission is to help the others see past her daughter Nora’s differences and treat her like anyone else; and she has had plenty of experience doing so. In this episode, she shares things she’s learned from it, like when to speak up and when to drop it and how to set the example for siblings and eventually Nora to be able to speak up on her behalf. For a full transcript, images, comments, and more visit the website: https://therarelifepodcast.com/show-notes/ep-7-educating-others-about-your-childs-differences-w-emily-young TRANSCRIPT: Madeline Cheney Emily Madeline Cheney Emily | |||
| 10 Mar 2022 | 82: Kim's Story | Hard-Earned Awe, Mothering a Glass Doll, and a Brand-New Marriage Put to the Test | 00:41:46 | |
When Kim’s picture-perfect pregnancy ended with a textbook delivery, she had no reason to expect that her newborn daughter would have a broken arm. After further imaging, they found she had fractured a rib while still in utero. This led to the suspected diagnosis of OI—a rare syndrome that results in extremely breakable bones. After they were discharged, little Julianne broke just about every limb. Kim and her husband were reeling with the unexpected medical journey they were on. In this episode, Kim shares what it was like to endure the learning curve during the first several months of her daughter’s life. She also talks about the awesome things that have come because of her daughter’s diagnosis, and the ways that her brand-new marriage was affected. Links: Follow Kim on Instagram Follow me on Instagram. Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions. Donate to the podcast via Buy Me a Coffee. Check out our appointment day merch. Check out our sponsor BetterHelp for online licensed therapy. | |||
| 14 Sep 2023 | 134: Child Loss 101 | What to Expect, Decisions You Can (and should) Make Now + How to Make The End Of Your Child’s Life As Beautiful As They Are | 01:12:01 | |
Losing a child isn’t something any of us want to think about... However for some of us, we know that we don’t have the luxury of putting off planning the logistics around the end of our child’s life. But where do you even start? In today’s episode, bereaved mother Leah Deason, pediatric hospice nurse Gina Thuene, and Tiffany Goodchild, a mother who has dealt with hospice care, share their experiences with us to offer a guide for parents who may find themselves preparing for the loss of their child. We talk about the hospice system, decisions that you can make ahead of time to make the end of your child’s life smoother and more peaceful, and what the process of losing a child can look like. TW: This episode will discuss child loss and the logistics of planning for such an event in gentle but frank terms. If this topic is triggering for you, consider saving it to come back to or listening in smaller segments to give you time to digest this heavy material. Links: Listen to Ep 130 on Anticipatory Grief. Visit the website for Now I Lay Me Down to Sleep (end of life photography). Look at @adventuresofamelieandbros stories for information on her diamond ring made from ashes of daughter. Check out Leah’s hospice memory making Amazon list. Follow Leah on Instagram @becauseofozzie! Follow Tiffany on Instagram @lifewithkourageouskarter! 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. If you love this podcast, please leave us a rating or review in your favorite podcast app!
And finally, here is Leah’s list of books that helped her through the child loss process: Holding On to Hope: A Pathway through Suffering to the Heart of God Hearing Jesus Speak into Your Sorrow It's OK That You're Not OK: Meeting Grief and Loss in a Culture That Doesn't Understand Finding Meaning: The Sixth Stage of Grief You Are the Mother of All Mothers - A Message of Hope for the Grieving Heart Born to Shine: Practical Tools to Help You SHINE, Even in Life’s Darkest Moments I Am Here: The Journey from Fear to Freedom Hope in the Dark: Believing God Is Good When Life Is Not Gentle Willow: a story for children about dying (their own death or others) by Joyce C. Mills, PhD Little Tree: A Story for Children with Serious Medical Illness | |||