Building connections can feel impossible when life is already

In this episode, I’m pulling back the curtain on our discussion

If you’ve been searching for a place where you can connect with other disability parents who just get it, this is your invitation.

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For disability parents, the New Year doesn’t always mean

In this episode, I’m sharing your thoughts on New Year’s

If the traditional “new year, new me” doesn’t fit your life, this one’s for you.

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Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

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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

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:

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Listen to Ep 108 on

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Donate to the podcast or Contact me about sponsoring an episode.

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Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And if you love this podcast, please

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

If you’ve ever felt like you’re carrying the weight of it all, alone, this one’s for you.

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Listen to Ep 108 on

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Holidays are supposed to be full of joy, right? But for disability parents, gift-giving can bring a whole mix of feelings: grief, frustration, and why did they buy this moments. Instead of magic, we’re juggling unconventional (or maybe not age-appropriate) toys for our kids, therapy equipment wrapped in bows, and family members who just don’t get it.

In this episode, I’m replaying part of Ep 108 with Amanda Griffith-Atkins where we talk about the challenges of shopping for our disabled kids and managing those tricky expectations. We're diving into the heartbreak of gifts that miss the mark and the joy of gifts that actually make your kid light up (think Elmo toys and shiny balloons).

If the holidays bring up all the complicated feels, 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.

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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!

So many parts of this life are difficult, traumatic, and honestly just unfair for us and our children... but there are bright spots and things we find ourselves grateful for, despite the hardship.  

So to prepare for this episode, we asked you about those things you’re most grateful for in this life, and boy, did you all deliver. You mentioned things big and small and oftentimes, things we’d have probably never considered before this life of disability parenting.

And in this episode, we’re sharing them all, from the way moments with our disabled children feel so much more precious to just having the best parking. If you need a little feel-good episode to brighten your day, don’t miss this one!
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Links:

Join The Rare Life newsletter and never miss an update!

Fill out our contact form to join upcoming discussion groups!

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Access the transcript on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

Season 10 is coming to a close, and it’s been a good one! While a little shorter than seasons in the past, we covered some big topics from hospitalizations to crunchy medical parenting to online bullying with some amazing stories mixed in. Outside of the podcast, we added two new board members, and we had our most successful round of Sticker Club yet!

So to celebrate the end of this season, per tradition, we’re sharing a little recap of the season, plus audio from three listeners as they describe which episodes touched them the most from Season 10. And we’re sharing our most listened to episodes from this season as well.

Finally, we’re giving you a look into what Season 11 has in store, and the mini episodes that we’re sharing in between seasons again.

Thank you so much for being here and supporting The Rare Life for 10 seasons now! We would not be here without you ❤️

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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!

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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.

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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.

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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