Explore every episode of the podcast The Rare Life
| Title | Pub. Date | Duration | |
|---|---|---|---|
| 172: Nikole’s Story | Diagnosis Misinformation + Never Giving Up | 24 Oct 2024 | 00:45:23 | |
Nikole’s delivery for her daughter Chloe was... less than ideal for quite a few reasons. Nikole’s health was in jeopardy, Chloe was delivered nearly two months early, and according to one especially rude NICU doctor, Chloe “looked funny.” This difficult experience reached a crescendo when Nikole was given the news of Chloe’s rare diagnosis, Wolf Hirschhorn syndrome—which included some inaccurate information about the disease (like an inaccurate life span.) But despite this traumatic start, Nikole and her family have learned to adjust, adapt, and help Chloe to thrive in the years since. In this episode, Nikole is sharing how she and her family created a team of medical staff they could trust despite some past bad experiences, how they celebrate each and every milestone for Chloe, and how they keep moving forward, as they are determined to never, ever give up on their daughter. This episode is equal parts relatable and uplifting. You can’t miss it! Links: Get tickets to a special screening of The Zebra and The Bear just for The Rare Life listeners! Join The Rare Life newsletter and never miss an update! Fill out our contact form to join upcoming discussion groups! Follow Nikole @martinfamilyshenanigans! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions. Access the transcript on the website here. And if you love this podcast, please leave us a rating or review in your favorite podcast app! | |||
| 171: The Financial Strain of Medical Parenting w/ Amanda Griffith-Atkins + Alyssa Nutile | 17 Oct 2024 | 01:05:32 | |
It’s no secret that parenthood is expensive. But when it comes to parenting a medically complex kid, the dial is turned up to 100. Everything with an “accessible” label is marked up 10x. We have to make renovations to our homes and vehicles with little to no financial assistance. And that’s often on top of career and work changes that have made our finances tighter to begin with. In this episode, I’m bringing back Alyssa Nutile and Amanda Griffith-Atkins to sort through the thoughts, feelings, and anxieties from this community about the financial aspect of this life. We cover many of the stressors, the guilt and shame associated with feeling like you can’t provide for your child, and some of the resources and routes other parents have used to ease some of the financial stress. This episode touches on some deeply personal territory for many of us, but I think it’ll leave us all feeling less shame and loneliness. Let’s dive in! Links: Visit the ABLEnow website to learn how to open an account for your child! Visit SupportNow to start a registry and share with your community. Join The Rare Life newsletter and never miss an update! Fill out our contact form to join upcoming discussion groups! Follow Alyssa on Instagram @caffeinated_caregivers! Follow Amanda on Instagram @amanda.griffith.atkins! Follow us on Instagram @the_rare_life! Listen to previous episodes with Alyssa: Ep 170 on Hospitalizations Ep 140 on Alyssa’s Story Ep 125 on Traveling with Disabled Children & on our recent season opener and finale episodes! Listen to previous episodes with Amanda: Ep 159 on Sharing the Mental Load Ep 156 on Getting a Divorce Ep 153 on Hurtful Things Loved Ones Say Ep 147 on Sex and Disability Parenting Ep 142 on If My Disabled Child Outlives Me Ep 135 on Career and Family Roles Ep 132 on Self-Care Ep 131 on Chronic Stress Ep 130 on Anticipatory Grief Ep 99 on Family Planning & our holiday season eps: Being Hospitalized During Holidays - Isolating at Home During Holidays & Why Holidays Can Suck. Donate to the podcast or Contact me about sponsoring an episode. Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions. Access the transcript on the website here. And if you love this podcast, please leave us a rating or review in your favorite podcast app! | |||
| Summer Mini #12: Adjusting to Disability Parenting as a Single Mom | Maddison’s Catch-Up | 15 Aug 2024 | 00:24:23 | |
It’s only been a year since we’ve heard from Maddison... but oh the things that can change in a year. Shortly after we initially recorded Maddison’s story, she and her husband separated. And the life that Maddison and her daughter knew before with a team of two parents working side by side and supporting each other, it just didn’t look the same anymore. In this mini-episode, Maddison shares how she’s coped with the abrupt adjustment to single medical parenthood. She shares the parts that she’s found to be most difficult, what she still grieves, and the surprising bright spots she’s found despite the painful changes. 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 129: Maddison’s Story. 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! | |||
| 100: Raising Awareness | Disabled People (and Their Parents) Do Not Owe Society Anything | 22 Sep 2022 | 00:42:09 | |
So often, we feel that as parents, we need to be raising awareness about issues relating to disability. Maybe we’re sharing our lives on social media in an effort to show that our child really isn’t that different from the next and deserves inclusion. Or perhaps we’re teaching about the importance of being an organ donor because our child wouldn’t be here today without generous donors. Or maybe we’re shouting the symptoms and definition of our child’s rare syndrome in the hopes that they’ll finally get the funding needed to research a cure. There are many causes to fight for and many reasons for doing so. But it’s important to remember that we are not obligated to raise awareness about anything. Becoming a parent to a child with a disability does not require it. In this episode, I invite parents to evaluate their cause and their “why” against the question: “is this serving me? Is it serving my child?” Because at the end of the day, that’s what really matters. Links: Children’s book What Happened to You? by James Catchpole Demystifying Disabilityby Emily Ladau Ep. 85 w/ Emily Ladau and Amanda Griffith-Atkins Ep. 23: Disability Advocacy w/ Jenny McLelland Disabled adults on Instagram whom I love learning from: | |||
| 99: Family Planning When You Have a Medically-Complex Child w/ Amanda Griffith-Atkins LMFT + 13 Special Guests | 15 Sep 2022 | 01:31:31 | |
When you have a child with a medical complexity or disability, so many things get flipped on their head. And one of those things is family planning. Something that may have seemed relatively simple and straightforward becomes muddled and complicated. Links: Episodes with Amanda Griffith-Atkins: Join this group of x-linked carriers called Remember the Girls Connect with us on Instagram! | |||
| 98: Siblings | Ways We Can Protect Our Glass Children w/ Melissa Schlemmer | 08 Sep 2022 | 00:44:46 | |
Siblings of disabled children are often referred to as “glass children.” Glass because people tend to look right through them and focus on the sibling with disabilities. And because they appear a lot stronger than they are. Because they are, afterall, just kids. In this special topic episode, Melissa Schlemmer shares all about her incredible son Alexander and his big heart. She talks about ways she protects his relationship with his disabled brother Christopher by not accentuating their differences and allowing them to simply be brothers. She also tells us of a tragedy that occurred in her mother’s family that has shaped the way she parents them. Links: Check out the Trexo Robotics website Follow us on Instagram: Melissa (Our AMAZING guest!) Trexo Robotics (our AMAZING sponsor!) Follow us on Facebook: Melissa (Our AMAZING guest!) Trexo Robotics (our AMAZING sponsor!) Episodes to listen to next: Ep. 40: Wendy + the Sibling Experience (a solo episode) Ep. 47: Siblings w/ Katie Taylor, CCLS (with a childlife specialist) Ep. 50: The Sibling Perspective w/ Katherine Acton (with an adult who grew up with a disabled sibling) | |||
| 97: Melissa Schlemmer’s Story | A Rare Disorder Affecting the Brain + Radical Acceptance | 01 Sep 2022 | 00:41:40 | |
When Melissa knew something was up with her infant-son Christopher nine years ago, she reassured herself that as long as his brain was ok, they would be ok. So, when his neurologist told her about his rare disorder and the way it affected his brain, everything crumbled around them. After years of navigating all the sub diagnoses that come along with his syndrome, Melissa has come to a place of radical acceptance of her son’s disabilities. In this episode, Melissa shares this and more. Links: Check out NAPA Center and their resources. Get info about NAPA Center’s new Chicago Clinic. Fill out an interest form for NAPA Center's new Chicago clinic. Listen to Ep. 77: To Those Who Cannot Say, “I Wouldn’t Have Them Any Other Way” Follow Melissa on Instagram Follow Melissa on Facebook 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. Access the transcript on the website here. | |||
| 96: “All We Want Is a Healthy Baby” | How This Feels to Parents of Unhealthy Babies | 25 Aug 2022 | 00:40:40 | |
We’ve probably all heard it before: When asked whether a parent is hoping their unborn baby is a boy or a girl, they reply sweetly, “all we want is a healthy baby.” To most people this seems like a valiant proclamation of unconditional love and indifference to the baby’s gender. But to parents of medically complex and admittedly very unhealthy babies, it can really pack a punch. In this solo episode, Madeline unpacks what emotions this often brings up for parents, drawing from her own experience as well as the input from listeners as submitted via Instagram. Links: Check out Worthy Brands website. SeeWorthy eye patches on Amazon. Listen to Ep. 60: Blindness. Listen to the Preface episode. 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. | |||
| 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 | 18 Aug 2022 | 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. | |||
| 94: Family + Friends | How to Stay Close When You Feel Worlds Apart w/ Chelsea Denham | 11 Aug 2022 | 00:48:12 | |
When receiving a diagnosis for your child—or dealing with medical complications—it can feel like you’re suddenly thrust into a separate world than your family and friends. And this can be super distressing and disorienting at a time you need them most. In this episode, Chelsea shares how her relationship with her family and friends has been impacted by the different life she leads with her disabled sons. We chat about the isolation we feel in knowing our friends and families have no idea what we go through. We also talk about ways we can try to be just a little more vulnerable with them and how to tell our family and friends what kind of support we want and need. Links: A huge thank you to our generous sponsor Moog Medical! Access Moog’s 24/7 live support for current users of their products like the Infinity Pump. Follow Chelsea 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. | |||
| 93: Chelsea’s Story | Airway Issues, a Dirty Baby, and Making Scary Medical Decisions | 04 Aug 2022 | 00:41:34 | |
When her 6-year-old son Jace was born, they quickly recognized how difficult it was for him to breathe. A NICU stay, rare diagnosis, several intense surgeries, and 4 years later, they welcomed their second son Emmerson to the family. Once again, they were facing difficulty breathing, a NICU stay, and surgeries all caused by the same rare condition their older son has. In this episode, Chelsea tells these stories and share how hard it is to make big medical decisions for her children because, so little is known about the rare conditions they have. We also discuss how blindsided they were when their second was born with similar issues, and the way that emergent medical situations with her sons affect her. Links: Follow Chelsea on Instagram @thiselegantlife. Follow The Rare Life on Instagram @the_rare_life. Check out adorable photos of Chelsea + fam! A huge thank you to our sponsor Moog Medical. Access Moog’s 24/7 live support for current users of their products like the Infinity Pump. | |||
| 92: Season 6 Kickoff | 28 Jul 2022 | 00:10:54 | |
We’re back with brand-new episodes of Season 6! In this short and sweet episode, host Madeline Cheney introduces the theme of the upcoming season and gives sneak peeks into the first four episodes of Season 6. Links: 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. | |||
| Jess’ Story | A Twinless Twin and Something to Prove (Rebroadcast) | 21 Jul 2022 | 00:34:32 | |
Not every twin has a living sibling—and Lily is an example of this tragic phenomenon. Her sister, Autumn, passed away at 24-weeks gestation, and she was born a few days later. In this episode, mom Jess shares the pain of losing a child and of the struggles that Lily has had because of her premature birth. Lily has a tracheostomy, is G-tube fed, and has damaged lungs due to her intubation during her 256-day NICU stay as she fought for her life. Lily almost died several times during her stay, but one time in particular has really stuck with her. Jess also opens up about the guilt she holds because of the clotting disorders which ultimately led to Autumn’s death and Lily’s prematurity. This is a rebroadcast of Ep. 37 of Season 3. Join us next time for Season 6’s kickoff episode! Links: Listen to Jess’ special topic epsiode about social media, released immediately after this one. Follow Jess on IG here: https://www.instagram.com/lilyslittlelungs/ Follow me on IG here: https://www.instagram.com/the_rare_life/ Still Apart of Us, a Podcast about Stillbirth, and Infant Loss: https://stillapartofus.com/ | |||
| Summer Mini #11: Family Planning Decisions + Changing Sibling Relationships | Madeline’s Catch-Up | 08 Aug 2024 | 00:24:58 | |
Three years ago, I shared two episodes about my own family: one where I discussed how I discovered that I was a carrier for my son’s condition, and another where I talked about how much my older daughter struggled with accepting her brother. In the years since, we’ve navigated difficult decisions and agonizing choices, and now, for once, we feel somewhat settled. In this episode, I’m sharing those decisions, how we made them, and how they’ll impact our future. Plus, I’m sharing a positive and heart-warming update on how my children have grown their sibling relationship. This episode is so tender, and I’m so honored to share it with you. Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us! Links: Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child! Listen to Ep 22: It’s All My Fault. Listen to Ep 40: Wendy + The Sibling Experience. 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! | |||
| The NICU Experience | An Initiation into Medically-Complex Parenting (rebroadcast) | 14 Jul 2022 | 00:38:56 | |
For many parents, the NICU is an initiation into the medically complex world. Medical terminology is thrown around with assumed understanding, and tubes and cords protrude their precious infant. Beyond that, the emotional rollercoaster endured pushes many parents past their limits—and yet here we are. In this solo episode, I share a bit about what Kimball’s NICU experience was for us, with memories that are relatable for my fellow parents of NICU babes, and eye-opening for the less experienced. This is a rebroadcast of Ep. 26 of Season 2. Links: Listen to Anna’s story episode, that released immediately after this one. Listen to the Preface Episode here: https://therarelifepodcast.com/show-notes/preface Ep. 13: Feeding Tube Adventures: https://therarelifepodcast.com/show-notes/ep-13-feeding-tube-adventures Ep. 5: A List of Diagnoses: https://therarelifepodcast.com/show-notes/ep-5-list-diagnoses-solo-episode Donate to Ronald McDonald House Charities here: https://secure2.convio.net/rmhci/site/SPageNavigator/pw/Donation_Landing.html 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. | |||
| Effie’s Story | Siblings, Italy, and a Next-Level Laugh (rebroadcast) | 07 Jul 2022 | 00:38:20 | |
Effie knew something was “off” with Ford from the day he was born, four years ago. After four months of being blown off by his pediatrician, Ford was admitted to the children’s hospital where he was analyzed and given an official (and extremely rare) diagnosis. Effie was completely blindsided and crushed. In this episode, Effie shares this experience of receiving Ford’s diagnosis. We also chat about the huge perspective-shift that comes along with a child with medical complexities—the little things are everything. Effie also talks about the precious relationship Ford shares with his younger sister Ezzy, as well as the bittersweet moments of watching Ezzy develop typically. Effie Parks is the amazing host of the podcast Once Upon a Gene. You can find a link to her podcast in the show notes! This is a rebroadcast of Ep. 41 from Season 3. Links: Listen to Ep. 42: Friendship and Inclusion for Our Children and Ourselves w/ Effie Parks, the episode released right after this one. See photos of Effie + fam: https://therarelifepodcast.com/ Effie’s podcast Once Upon a Gene: https://effieparks.com/podcast Follow Effie on Instagram: https://www.instagram.com/onceuponagene.podcast/ Follow me on Instagram: https://www.instagram.com/the_rare_life/ 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. | |||
| What Your Child’s Doctors Want You to Know, But Don’t Tell You w/ Dr. Dominic Moore, MD (Rebroadcast) | 30 Jun 2022 | 00:42:33 | |
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. This episode is a rebroadcast from Season 4. Links: Ep. 71: Confessions of a NICU Nurse w/ Sam Keirsey, BSN Atypical Truth podcast. The Lower Lights music group on Spotify. 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. | |||
| Confessions of a Medical Mama w/ Anna Brown (Rebroadcast) | 23 Jun 2022 | 00:38:46 | |
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 shares 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. This is a rebroadcast of Ep. 46: Confessions of a Special-Needs Mama w/ Anna Brown from Season 3. We will be back to kick off Season 6 on July 28th. Links: Listen to Anna’s story episode, released just prior to this episode. Listen to the episode about siblings, released just after this episode. Follow Anna on IG: https://www.instagram.com/mothering_rare/ Follow me on IG: https://www.instagram.com/the_rare_life/ 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. | |||
| Medical Equipment| The Ultimate Hate/Love Relationship + How to Vacation With It All w/ Falesha Johnson (Rebroadcast) | 16 Jun 2022 | 00:32:32 | |
Cali 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. This episode is being rebroadcasted from Ep. 66 in Season 4. Links: Listen to Falesha’s story episode released immediately before this one. Listen to Ep. 67, the episode released immediately after this one. 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 | |||
| It’s All My Fault (Rebroadcast) | 09 Jun 2022 | 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. | |||
| It’s OK to be Angry w/ Orley Bills, LCSW (Rebroadcast) | 02 Jun 2022 | 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. | |||
| When Your Mommy-Gut Is Alarming and The Doctors Won’t Listen w/ Tameka Diaz (Rebroadcast) | 26 May 2022 | 00:46:36 | |
Mom Tameka Diaz followed her gut that something was off with her daughter Evely (and had suspicions confirmed) not once, not twice, but three times! In each instance, she faced resistance of medical professionals and felt like she was on trial to prove that her daughter deserved tests and screens. The first time, Evely’s profound heart failure was discovered. The second time, Evely received a sleep study after much resistance and found she had severe sleep apnea and required surgeries and machines to help her breathe at night. And most recently, they found epilepsy after another round of fighting doctors to give her daughter the tests to look into her concerns. Because of these experiences, Tameka is passionate in empowering other parents to follow our gut and never stop fighting for them. In this episode, she shares each of these three experiences and gives us advice on fighting for our own medically-complex children. She also speaks to the emotional breaking point she hit from all the stress and the necessity for caring for ourselves, too. Links: Book a free strategy session with Chardell or check out her courses on her website. Grab your free Appointment Day Fuel Plan. Find Tameka on Instagram @thediazgirls. Find me on Instagram @the_rare_life. Listen to Ep. 24: Disability Advocacy w/ Jenny McLelland. Listen to Tameka's story episode that was released prior to this one. Listen to Educational Advocacy w/ Catherine Whitcher, released just after this one. | |||
| 91: Season 5 Finale w/ Special Guest Brittany Steitz | 19 May 2022 | 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. | |||
| 90: Living with Sleep Deprivation w/ Jill Arneson | 12 May 2022 | 00:28:04 | |
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. Links: Ep. 25: EMDR Trauma Therapy w/ Rosey S. | |||
| Summer Mini #10: Finding a New Home + Starting Over | Tiffany’s Catch-Up | 01 Aug 2024 | 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! | |||
| 89: Gaslit by Others and Ourselves | 05 May 2022 | 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 | |||
| 88: Numbing Out When Things Are Tough w/ Anna Smyth, MS, RYT | 28 Apr 2022 | 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. | |||
| 87: Depression, Anxiety, + PTSD in Medically-Complex Parenting w/ Karley Henderson | 21 Apr 2022 | 00:38:12 | |
Karley has always dealt with anxiety. But as is the case for many of us, her mental health took a turn for the worse when her daughter Nora was born. Because of the medical trauma that ensued for the whole family, she now deals with night terrors, panic attacks, and depression as well. In this episode, Karley shares how she copes with these things while caring for her daughters. She also shares the difficulty of therapy, accepting a diagnosis of PTSD, and seeing her six-year-old daughter struggle with her own mental health. Links: Listen to Ep. 25: EMDR Trauma Therapy w/ Rosey Shaeffermyer, LCSW Check out our sponsor BetterHelp for online licensed therapy. Follow Karley on Instagram. Follow me on Instagram. | |||
| 86: Karley’s Story | Two Rare Syndromes, Playing the What-If Game, and Appointments on The Daily | 14 Apr 2022 | 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. | |||
| 85: Should A Child’s Disability be Part of Their Parent’s Identity? w/ Author Emily Ladau and Amanda Griffith-Atkins, LMFT | 07 Apr 2022 | 00:51:49 | |
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? Links: Check out our sponsor WorthyBrands Eye and Port Patches. 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” | |||
| 84: Grieving Our Child’s Medical Complexity w/ Carrie M. Holt | 31 Mar 2022 | 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. | |||
| 83: An Evolution of Faith w/ Kimberly Arnold, Part 2 | 24 Mar 2022 | 00:32:21 | |
Kim grew up in a very religious household. Her faith was relatively straightforward until she was thrown a major curveball—her daughter was born with a rare bone disorder. In this episode, Kim shares the anger towards and betrayal from God that she felt whilst she pled for a miracle for her daughter. Everything shifted for her when her daughter was involved in a critical accident, and she chose to place her daughter in His hands, regardless of the outcome. This episode is divided into two parts. This is part 2. Links: Check out our sponsor BetterHelp for online licensed therapy. 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. | |||
| 83: An Evolution of Faith w/ Kim Arnold, Part 1 | 17 Mar 2022 | 00:36:30 | |
Kim grew up in a very religious household. Her faith was relatively straightforward until she was thrown a major curveball—her daughter was born with a rare bone disorder. In this episode, Kim shares the anger towards and betrayal from God that she felt whilst she pled for a miracle for her daughter. Everything shifted for her when her daughter was involved in a critical accident, and she chose to place her daughter in His hands, regardless of the outcome. This episode is divided into two parts. This is part 1. Links: Check out our sponsor BetterHelp for online licensed therapy. 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. | |||
| 82: Kim's Story | Hard-Earned Awe, Mothering a Glass Doll, and a Brand-New Marriage Put to the Test | 10 Mar 2022 | 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. | |||
| 81: Health Anxiety w/ Amanda Griffith-Atkins, LMFT | 03 Mar 2022 | 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. | |||
| Summer Mini #9: Our Complicated Relationship with Medically Complex Facebook Groups | 25 Jul 2024 | 00:21:01 | |
You know that thing that you can’t seem to live without, but also don’t want to live with most of the time? That seems to describe the relationship most of us have with the medically complex and rare disease Facebook group community. In this episode, we’re sharing all your thoughts, feelings, and frustrations with these crucial, life-saving, and yet sometimes difficult to navigate spaces on the internet. 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! | |||
| 80: Celebrating Our Children + Our Growth w/ Lexie Emory, Roya Malaekeh, Analy Navarro, Heather Cox, and Rayel Lockhart | 24 Feb 2022 | 00:40:41 | |
In this special Rare Disease Day episode, five parents share ways they have been changed by the rare disease journey, as experienced from the parent-perspective. They also share a few of their favorite things about their child. This episode is a celebration of the beauty of being parent to medically-complex children and the important lessons we pick up along the way. Links: Book “Mighty Me” by Analy Navarro Book “Special” by Melanie Dimmitt Join the Facebook group Parents of Children with Rare Conditions. Rayel Lockhart on Instagram: https://www.instagram.com/itsalockhartlife/ Lexie Emory on Instagram: https://www.instagram.com/lexie_be_cheesin/ Heather Cox on Instagram: https://www.instagram.com/ariannasarmy1/ Analy Navarro on Instagram: https://www.instagram.com/the_a_navarro/ Roya Malaekeh on Instagram: https://www.instagram.com/the_destroya/ Follow me on Instagram. Follow the Facebook page. Donate to the podcast via Buy Me a Coffee. Check out our appointment day merch. Check out our sponsor BetterHelp for online licensed therapy. | |||
| 79: Debilitating Guilt + the ‘You Break It, You Fix It’ Mentality w/ Wendy Hair | 17 Feb 2022 | 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. | |||
| 78: Wendy’s Story | 10 Feb 2022 | 00:41:43 | |
When Ammon was born, Wendy immediately knew something was different about him. He was baby no. 6, and her internal alarms were sounding. As he grew, more and more medical issues arose. In this episode, she shares the trauma she experienced when no one took her concerns seriously. She also tells us of the incredible story of finding his rare genetic syndrome diagnosis when he was five years old, and how that affected her grief. Ammon is now 15 years-old and brings her and her family so much joy. Links: Check out the website for photos of Wendy + fam. Ep. 64: Improvement-Triggered Grief Connect with Wendy on Instagram. Connect with me on Instagram. | |||
| 77: To Those Who Cannot Say, “I Wouldn’t Have Them Any Other Way.” | 03 Feb 2022 | 00:28:54 | |
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 than the sadness or pain we have over anyof these disabilities or medical issues always stems from the love we have for our children. Links: 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. | |||
| 76: Medical Mom Soul-Searching w/ Moira Cleary, CPC | 27 Jan 2022 | 00:45:07 | |
As caregivers, our needs often get pushed to the side. Self-care can seem impossible. Which is why I love the simple act of recognizing our top four values. According to Moira Cleary, when we identify our top four values, we identify what we need most in our lives. These can vary wildly from person to person. Moira gives us the tools we need to do a little soul-searching and figure out just what these values are for us. Simply being aware of these things can inspire us to make subtle and simple adaptations to our ever day (busy) lives that truly make a difference. In this episode, we also discuss the need let go of the expectations we had for parenthood and embrace our very different reality. Moira also speaks to the importance of recognizing our limited capacities—We cannot and should not try to do it all. Links: Ep. 32: Self-Care w/ Jessica Patay. Download Moira’s Value Exercise. Moira’s website. Follow Moira on Instagram. Follow me on Instagram. | |||
| 75: My Journey as an Adoptive and Foster Medical-Mama w/ Sarah Yates | 20 Jan 2022 | 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. | |||
| 74: Sarah’s Story | 13 Jan 2022 | 00:43:04 | |
When Sarah was assigned to care for baby Zariah in the NICU, she fell in love with her. When Zariah’s birth parents neglected to visit or be involved, it was clear that Zariah would need a foster home, and eventual adoption. Sarah immediately knew she was meant to be her mother. Convincing her husband Steve was another story. Because of HIPAA laws, he wasn’t allowed to meet Zariah until they were officially her foster parents. Miraculously, he agreed. After several months as a family, Zariah passed away as a result of a tragic trach accident with her home health nurse. In this episode, Sarah shares their journey with Zariah, and all the love they share. Links: Follow Sarah on Instagram @adoptive.foster.medical.mama. Answer this month’s question. Join Parents of Children with Rare Conditions FB group. | |||
| 73: Season 5 Kickoff | 06 Jan 2022 | 00:13:09 | |
It is SO good to be back! After an extra long break between seasons, I’m here with a brand-new season of episodes all centered around our personal journey as parents and caregivers. Obviously, we refer to our personal journeys frequently in virtually every episode, but Season 5 is a chance to really home in on and talk about what occurs for us at a very personal level while facing a very different reality than we had envisioned for ourselves. In this episode, you’ll get a closer look at this season’s theme, and listen to extended clips of the first four episodes coming your way. Links: Follow meon 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. | |||
| Announcement and Recommended Episode #7 | 30 Dec 2021 | 00:02:56 | |
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. 22: It’s All My Fault, an exceptionally vulnerable solo episode about finding out I’m a carrier for my son’s genetic syndrome. I share the profound guilt I carry, and the emotions surrounding the fact that I might pass it on to another child someday. Next week’s episode is Season 5’s Kickoff! I’m stoked to be back with fresh, new episodes. | |||
| Announcement and Recommended Episode #6 | 23 Dec 2021 | 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. | |||
| Summer Mini #8: Rebuilding After Life-Changing Loss | Kari’s Catch-Up | 18 Jul 2024 | 00:24:50 | |
Kari was one of our very first guests almost four years ago now. When we talked then, her daughter Sloan was still tiny, her husband was still alive, and the Covid-19 pandemic hadn’t happened yet. And now? Well, her entire world has changed in big and small ways. In this catch-up episode, Kari shares with us what it’s been like trying to relearn how to live in the world without her husband and partner, and she shares all the ways that Sloan has been the driving force to keep her going in some of her darkest moments. She also shares how full her life is now, despite the despair she’s waded through. This episode is so real and raw, and I’m so honored to share it with you. Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food for our tube-fed kids that’s easy to access and use. Honestly, if our kids are eating Functional Formularies formula, they’re probably eating better than us! Links: Visit the Functional Formularies website and get easy, nutritious, tube-friendly meals for your child! Listen to Ep 10: The Story of Sloan and Ep 11: Embracing Your Medical Community with Kari. Listen to Ep 123: “Special Needs” with Kari Harbath and Hannah Setzer. Listen to Ep 151: Fostering Friendships with Other Disability Parents with Kari and Kate. 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! | |||
| Announcement and Recommended Episode #5 | 16 Dec 2021 | 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. | |||
| Announcement and Recommended Episode #4 | 09 Dec 2021 | 00:02:53 | |
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. 39: Inclusive Books are for Everyone. In this episode, I chat with three fabulous authors of inclusive children’s books—Macy Gilson (author of Kindness is Golden), Jessica Parham (author of Good to be Me and Baking up a Storm), and Megan DeJarnett (author of No Such Thing as Normal). | |||
| Announcement and Recommended Episode #3 | 02 Dec 2021 | 00:02:29 | |
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. 37: The Story of Lily. In it, I chat with one of my all-time favorite guests Jess Wolff whose twin daughters were born at 24-week gestation. One of her daughters, Autumn, sadly passed away, and Lily spent her first year in the NICU. | |||