By Madeline Cheney
5
133133 ratings
The podcast currently has 226 episodes available.
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 ❤️
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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!
It’s our final Sticker Club mini episode, and today, Alyssa Nutile, producer and doer-of-all-the-things at The Rare Life, is here to break down what production looks like for each episode of the podcast, from start to finish. (It’s probably a lot more than you would think!)
And for the sake of transparency, we’re also sharing our mission here at The Rare Life, why we only fundraise twice a year, and how we use those funds. If you’ve ever wanted to get a glimpse of how The Rare Life works behind the scenes, this episode is for you!
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 a book bundle, sign up for Sticker Club! Today is the last day!
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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!
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!
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
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!
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Links:
Join the TRL Sticker Club and learn about our Book Bundle
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join
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
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.
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Links:
Join Sticker Club so you can support The Rare Life all year long (and get some awesome stickers as a thank you!)
Join The Rare Life newsletter and never miss an update (including the moment when Sticker Club opens!)
Fill out our contact form to join upcoming discussion groups!
Listen to Ep 155 with Aneesa.
Follow Alyssa & Erica on Instagram at @caffeinated_caregivers!
Follow Hailey on Instagram @growing_juniper!
Follow Suzi on Instagram @oliversodyssey1!
Follow us on Instagram @the_rare_life!
Erica’s Episodes: 54: Disabled Adult Perspective
Hailey’s Episodes: 117: Traumaversaries
Sticker Club 2024 is live!! And to celebrate, we’ll be handing out a book bundle of six amazing disability parenting books in a giveaway sponsored by Amanda Griffith-Atkins.
In this episode, we’re sharing the titles of these disability parenting books, what we love about them, and how you can enter the giveaway to win this book bundle! (Spoiler: joining Sticker Club today will get you a leg up!)
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, don’t miss this episode!
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Links:
Join the TRL Sticker Club 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!
It’s the moment you’ve all been waiting for... The Rare Life Sticker Club is back and better than ever! In case you missed it last year, Sticker Club is an annual fundraiser for listeners to help support the show by signing up for a monthly donation (and as a thank you, we send you stickers!)
In this episode, we’re telling you all about the new designs (there are three this year, and they are so cool!), how Sticker Club works, the new options for receiving your stickers, and how to join an awesome giveaway for Sticker Club members sponsored by Amanda Griffith-Atkins.
If you want to learn more about how to support The Rare Life AND get some awesome stickers as a thank you, don’t miss this episode!
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Links:
Join the sticker club: https://therarelife.org/stickerclub
Join The Rare Life newsletter and never miss an update (including the moment when Sticker Club opens!)
Fill out our contact form to join upcoming discussion groups!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
Nikole’s delivery for her daughter Chloe was... less than ideal for quite a few reasons. Nikole’s health was in jeopardy, Chloe was delivered nearly two months early, and according to one especially rude NICU doctor, Chloe “looked funny.”
This difficult experience reached a crescendo when Nikole was given the news of Chloe’s rare diagnosis, Wolf Hirschhorn syndrome—which included some inaccurate information about the disease (like an inaccurate life span.)
But despite this traumatic start, Nikole and her family have learned to adjust, adapt, and help Chloe to thrive in the years since. In this episode, Nikole is sharing how she and her family created a team of medical staff they could trust despite some past bad experiences, how they celebrate each and every milestone for Chloe, and how they keep moving forward, as they are determined to never, ever give up on their daughter.
This episode is equal parts relatable and uplifting. You can’t miss it!
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Links:
Get tickets to a special screening of The Zebra and The Bear just for The Rare Life listeners!
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Follow Nikole @martinfamilyshenanigans!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
It’s no secret that parenthood is expensive. But when it comes to parenting a medically complex kid, the dial is turned up to 100. Everything with an “accessible” label is marked up 10x. We have to make renovations to our homes and vehicles with little to no financial assistance. And that’s often on top of career and work changes that have made our finances tighter to begin with.
In this episode, I’m bringing back Alyssa Nutile and Amanda Griffith-Atkins to sort through the thoughts, feelings, and anxieties from this community about the financial aspect of this life. We cover many of the stressors, the guilt and shame associated with feeling like you can’t provide for your child, and some of the resources and routes other parents have used to ease some of the financial stress.
This episode touches on some deeply personal territory for many of us, but I think it’ll leave us all feeling less shame and loneliness. Let’s dive in!
Links:
Visit the ABLEnow website to learn how to open an account for your child!
Visit SupportNow to start a registry and share with your community.
Join The Rare Life newsletter and never miss an update!
Fill out our contact form to join upcoming discussion groups!
Follow Alyssa on Instagram @caffeinated_caregivers!
Follow Amanda on Instagram @amanda.griffith.atkins!
Follow us on Instagram @the_rare_life!
Listen to previous episodes with Alyssa:
Ep 170 on Hospitalizations
Ep 140 on Alyssa’s Story
Ep 125 on Traveling with Disabled Children
& on our recent season opener and finale episodes!
Listen to previous episodes with Amanda:
Ep 159 on Sharing the Mental Load
Ep 156 on Getting a Divorce
Ep 153 on Hurtful Things Loved Ones Say
Ep 147 on Sex and Disability Parenting
Ep 142 on If My Disabled Child Outlives Me
Ep 135 on Career and Family Roles
Ep 132 on Self-Care
Ep 131 on Chronic Stress
Ep 130 on Anticipatory Grief
Ep 99 on Family Planning
Ep 85 on Parental Identity
Ep 81 on Health Anxiety
& our holiday season eps: Being Hospitalized During Holidays - Isolating at Home During Holidays & Why Holidays Can Suck.
Donate to the podcast or Contact me about sponsoring an episode.
Follow the Facebook page.
Join the Facebook group Parents of Children with Rare Conditions.
Access the transcript on the website here.
And if you love this podcast, please leave us a rating or review in your favorite podcast app!
There are few things as intense as an inpatient stay with your child. The pressure is on, the anxiety is at an all-time high, and the hypervigilance is ever present. And honestly? It doesn’t even matter if it’s a planned observation or an emergency situation, it’s still so stressful.
In this episode, I talk through the whole experience of hospital stays with Alyssa Nutile and Larisa Bothma. We discuss experiences and thoughts shared from the community, as we cover topics like the lack of food and sleep, the triggers that are all over the hospital, the difficulties that continue as we come home, and so much more.
Plus, we cover those existential questions that come up during hospital stays... like if this might be the one we don’t all come home from, and how those around us can help out during a hospital stay.
If your child has ever had a hospital stay, this episode is going to be so relatable.
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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!
The podcast currently has 226 episodes available.
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