196: One & Done | Deciding Not to Have More Children After Disability
When your child has complex medical needs, the question of more children isn’t always simple.And for some parents of disabled children, the decision to stop at one might not even feel like a decision at all.In this episode, Alyssa shares responses from hundreds of parents who live in this reality: the sadness of not giving their child a sibling, the guilt of choices that never felt like choices, the relief of knowing their family is complete, and the complicated emotions that sit in between.If you’ve felt sadness, certainty—or both at the same time—about stopping at one, we hope this episode will feel deeplyfamiliar.Links:Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups!Listen to Ep 99: Family Planning.Listen to 194: Season 12 Kickoff forMadeline’s big announcement!Follow us on Instagram @the_rare_life!Donateto the podcast or Contactme 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 usa rating or review in your favorite podcast app!
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195: An Invisible Disability, Living in Survival Mode + Giving Up Her Dream Career | Ali’s Story
What happens when your child’s rare disease doesn’t look “serious enough” to the outside world? For Ali Platt, the invisibility of her daughter’s Eosinophilic Esophagitis (EoE) meant battles with doctors, endless appeals to Medicaid, and colleagues who refused understand as Ali spent months and years trying to prove that her daughter’s suffering is real.In this episode, Ali shares it all: how caregiving collided with her career in law enforcement, the isolation she’s felt without a local support network, the constant state of survival mode, the grief of not being able to stop her daughter’s pain, and what it’s like to advocate for your child when their disabilities aren’t as visible to the general public.If you’ve ever felt unseen, doubted, or forced to do the impossible just to keep your child safe, this episode will hit home.Links:Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups!Listen to 194: Season 12 Kickoff forMadeline’s big announcement!Follow us on Instagram @the_rare_life!Donateto the podcast or Contactme 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 usa rating or review in your favorite podcast app!
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194: Kicking Off Season 12 | Episode Sneak Peeks + a BIG Announcement
Season 12 is here and, once again, the theme is all about relationships: the relationships we have with our children, our partners, our children’s medical teams, and even each other.We’ll be sharing episodes featuring incredibly tender stories, exploring the difficulty around making friends with other disability parents, and discussing the many ways this life can change our romantic relationships, just to name a few.Plus, we have a big announcement! This season is going to be a little different than the last 11, but don’t worry. It’s all good things, and The Rare Life isn’t going anywhere anytime soon.Finally, we’re wrapping up this season opener with clips from the first four episodes. This is one episode you’re not going to want to miss!Links:Join The Rare Life newsletter and never miss an update!Listen to the Getting to Know Alyssa episode.Listen to 140: Alyssa’s Story.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.
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When Therapists Leave | Feelings That Come Up + Knowing When It’s Time to Cut Ties
Therapists come and go, but that doesn’t make it easy. When a beloved therapist leaves, it can feel like losing a member of the family. And when it’s a bad fit, it can be arelief, but it’s still exhausting to start over.In this mini episode, Alyssa reads your experiences ofloving and losing great therapists, finding the courage to end relationships that weren’t the right fit, and navigating the messy emotions in between.If you’ve ever dreaded the change or welcomed it with open arms, you’re not alone in thisrollercoaster.Links:Join The Rare Life newsletter and never miss an update!Listen to Ep. 165: What We Want Our Child’s Therapiststo Know, But Don’t Tell Them w/ Alex Farha.Listen to Ep. 126: Therapies | When to Scale Back andHow to Do So w/ Andrea Loveday-Brown and Larkin O’Leary.Listen to Ep. 9: 3 Ways to Take Charge of Your Therapyand Medical Team.Fill out our contact form to joinupcoming 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.
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How To Talk To Kids About Disabilities
Talking about disability with kids can feel like walking a tightrope. What do you say? How much do you explain? And when do you just… not?In this episode, Alyssa and I share how we each approach these conversations with our own kids, from siblings and cousins to the curious child at the park. We talk about usingneutral language, why we skip the sugarcoating, and the importance of following your kid’s lead.We also explore why it’s okay to keep things simple and ouch on how to talk to our disabled kids in ways that empower them as they grow.Whether you're raising a disabled child, a sibling, or a curious kid with questions, this episode offers real-life examples and encouragement for these tender, tricky conversations.Links:Join The Rare Life newsletter and never miss an update!Fill out our contact form to joinupcoming discussion groups!Follow Alyssa at @alyssanewt!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.
This is the real, raw, and all the feels of loving a child with disabilities. Episodes feature parent-guests, professionals, and solo episodes with host Madeline Cheney.
Their authentic conversations don’t shy away from the strong and mixed emotions that often accompany medically-complex parenting.
Parents listen in to feel seen, validated, and receive much-needed solidarity. Professionals working with disabled people listen in to better understand what is often going on under the surface for a family living with disabilities.
UK