The Rare Life

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!  

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. 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!

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!⠀⠀⠀⠀⠀⠀⠀⠀⠀ Links: 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!

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!