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 Madelin...
183: Epilepsy | Unpredictability + Emotional Toll it Takes on Parents w/ Hailey Adkisson
Imagine living on high alert, every second of every day. That’s life with severe, uncontrolled epilepsy. You’re always watching, always listening, always bracing for the next seizure. And when they happen multiple times a day, there’s no break. No way to ever fully relax.In Ep 183 of The Rare Life, Hailey Atkison shares the raw reality of parenting a child with severe, refractory epilepsy. She talks about the emotional toll of watching her daughter, Juniper, seize multiple times a day, the way it impacts her entire family—including her sons—and the impossible task of balancing hope with the knowledge that nothing they’ve tried has truly worked.She also dives into the impossible choices—when to push for new treatments, when to let go, and how she’s learning to focus on the good moments in between. Because when epilepsy takes so much, holding onto joy becomes an act of defiance.And a huge thank you to our sponsor, MOOG Medical, for making this episode possible!Links:If your child uses an Infinity pump, you can call the Moog Medical 24/7 Clinical Helpline for any assistance you need at 1-800-970-2337 or moogmedical.com/contact.Listen to Hailey’s previous episodes: 174 on silencing parents and 117 on traumaversaries.Listen to Hailey’s husband Derek on 146: The Dad episode.Get Hailey’s book, What is Epilepsy?Fill out our contact form to join upcoming discussion groups!Follow Hailey at @growing_juniper!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!
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182: Hobbies for Disability Parents | Why We Need Them + How to Squeeze Them In w/ Amanda Griffith-Atkins
When your life revolves around medical schedules, appointments, and constant caregiving, hobbies can feel a little unnecessary. Where do we find the time? The energy? The mental bandwidth?It’s easy to fall into the trap of thinking that any time spent on ourselves is selfish. But for many of us, finding ways to adapt our hobbies to fit into our medicalized life can be game-changing.In Ep 182 of The Rare Life, Amanda Griffith-Atkins joins me to dive into all things hobbies: the loss of identity when we lose them, the guilt and grief that can come with doing something “just for you,” and how even the smallest hobbies can become a lifeline.Plus, our 2nd Annual Friends and Family Fundraiser is live! We’re not asking for your funds, only that you share this fundraiser with your friends, family, and community that may want to contribute. Thank you so much! We couldn’t do this without you!Links:Help us continue The Rare Life by asking your community to donate to our Friends and Family Fundraiser between Feb 14-Feb 28!Fill out our contact form to join upcoming discussion groups!Follow Amanda at @amanda.griffith.atkins!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!
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181: Kait’s Story | Fertility Struggles, A Surviving Twin, + “What Could Have Been”
When Kait Parrish found out she was pregnant with twins, she imagined matching outfits, sibling giggles, and the life she had always dreamed of. Instead, at 24 weeks, she gave birth to two fragile babies fighting for survival in the NICU. Then, two weeks later, she lost one of them.In this raw and deeply personal episode, Kait shares the heartbreak of losing Avery, the terrifying rollercoaster of Addie’s early medical battles, and how her perspective on parenting shifted when she became pregnant again. We also talk about the complexity of raising a medically complex child alongside a non-disabled sibling, and the emotions that come with it all.From NICU trauma to navigating life after loss, Kait’s story is one of resilience, heartbreak, and unexpected love. If you’ve ever felt like your parenting journey didn’t go as planned, you’ll find so much to relate to here.Plus, our 2nd Annual Friends and Family Fundraiser is live! We’re not asking for your funds, only that you share this fundraiser with your friends, family, and community that may want to contribute. Thank you so much! We couldn’t do this without you!And a big thank you to MOOG, our sponsor for this episode! Links:Help us continue The Rare Life by asking your community to donate to our Friends and Family Fundraiser between Feb 14-Feb 28!Visit MOOG’s website to see the many ways they support families like ours!Fill out our contact form to join upcoming discussion groups!Follow Alyssa and Erica at @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!
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180: Does Disability Parenting Ever Get Easier? Survival Mode, Burnout Mode, and Beyond w/ Erica Stearns and Alyssa Nutile
The age old question: Does this life ever get easier? And if so, when?Just as you might expect, the answer isn’t quite cut and dry, but in this episode, I’m joined by Erica Stearns and Alyssa Nutile to sort through this complex question. Using their Caregiver Continuum framework, they offer a way for you to orient yourself and gain footing as a disability parent, even if life doesn’t always feel like it’s getting easier.If you’ve been feeling lost and overwhelmed in this parenting journey, this episode is here to give you an anchor point.And on February 14, we’re launching our 2nd Annual Friends and Family Fundraiser! We understand that this community is overworked and under-resourced, so we’re not asking for your funds, only that you share this fundraiser with your friends, family, and community that may want to contribute. Thank you so much! We couldn’t do this without you! Links:Ask your community to donate to our Friends and Family Fundraiser between Feb 14-Feb 28!Or ask them to donate via Venmo @the_rare_life! https://venmo.com/code?user_id=4224512098830319954&created=1739551472.105737&printed=1 Listen to Ep 170 all about hospitalizations.Listen to Ep 54 on Erica’s perspective as a disabled adult.Hear Alyssa’s other episodes: 179: Exhaustion, 171: Financial Strain, 140: Alyssa’s Story,125: Travel w/ Disabled KidsRead more aboutthe Caregiver Continuum.Fill out our contact form to join upcoming discussion groups!Follow Alyssa and Erica at @caffeinated_caregivers!Follow us on Instagram @the_rare_life!Donate to the podcast orContact me about sponsoring an episode.Followthe Facebook page.Join the Facebook groupParents of Children with Rare Conditions.Access the transcript on the websitehere.And if you love this podcast, please leave us a rating or review in your favorite podcast app!
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179: The Exhaustion of Being a Disability Parent w/ Alyssa Nutile
The exhaustion that comes with disability parenting isn’t just about sleep deprivation.It’s everything else too: the mental exhaustion of managing a child’s entire medical life. The weight of being the only one who knows all the details. The grief. The fear. The constant pressure of doing everything right with so little support. And that’s just scratching the surface.In this episode of The Rare Life, I’m joined by our producer, Alyssa Nutile, to share responses from the community about all the things contributing to our collective exhaustion and why, some days, it does feel like too much for one person to carry.If you’ve ever wondered how you’ll keep going when you’re just so drained, you are not alone. This episode is for you.Also, huge thank you to our sponsorFunctional 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!Fill out our contact form to join upcoming discussion groups!Follow Alyssa at@caffeinated_caregivers!Follow us on Instagram@the_rare_life!Donate to the podcast orContact me about sponsoring an episode.Followthe Facebook page.Join the Facebook groupParents of Children with Rare Conditions.Access the transcript on the websitehere.And if you love this podcast, please leave us a rating or review in your favorite podcast app!
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