Clinical trials are so important. They’re how new therapies and treatments and cures are developed for diseases, and how we update our medical knowledge. At the same time, they aren’t without risk for our kids and our families. So, how do you decide whether it’s worth it? We’re breaking down that question with pros, cons, and personal experiences.A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!Links:Fill out our contact form to join upcoming discussion groups!Join The Rare Life newsletter and never miss an update!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.

Nature can be healing. But when you have a disabled or medically complex child, getting outside can also be complicated.Today, we’re talking about the ways nature grounds us, the grief that can come up when it is not accessible to our kids, and the small, beautiful ways our families still find their own version of outside.A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real food meals that are ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!Links:Fill out our contact form to join upcoming discussion groups!Join The Rare Life newsletter and never miss an update!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.

For most of us, traveling with medically complex and disabled children can feel daunting, scary, or maybe even impossible. But while not necessarily easy or simple, if travel is a priority for your family, it is possible with the right planning and preparation.In today’s episode, we share the best tips and tricks from The Rare Life community. We cover everything from general planning to airplane specific tips (there are a ton!) to finding the best accommodations and more. We even have a few tips for camping with medically complex kiddos!Plus, we also dive into the big feelings that can come up for us around traveling with our kids and why it’s okay if that’s not a priority for your family right now. If you really want to take your disabled children on a trip, there are many ways to do it, but we also recognize that travel still isn’t feasible or accessible for many.Thank you to everyone who submitted tips, tricks, hacks, and ideas to this episode! And don’t forget to check our website and YouTube channel (linked below) for articles linking our favorite travel items, carriers, and tips, plus images of all the setups and devices parents in our community use.Links:Visit our Youtube channel to see thevideo version of this episode with photos of all the items mentioned and captions so you can read along!Listen to Ep 118: Organization Hacks for helpful devices when packing andtraveling.Listen to Ep 66 with Falesha Johnson on how she travels with her daughter Cali, who was machine dependent at the time.Follow us on Instagram @the_rare_life!Fill out our contact form to join upcoming discussion groups!Join The Rare Life newsletter and never miss an update!Donate to the podcast or Contact me about sponsoring an episode.

The dads deserve a village too.In this Father’s Day mini episode, Madeline talks with Lizzy of Wonders of Wally about her poem, The Forgotten Father, and the quiet, crushing ways dads are often expected to carry everything without being seen.A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real food meals that are ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!Links:Listen to Ep 146: The Dad Perspective.Fill out our contact form to join upcoming discussion groups!Join The Rare Life newsletter and never miss an update!Follow Lizzy on Instagram @wonders_of_wally!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.

It’s summer! But when you have a disabled or medically complex kids, this season can bring with it many, many mixed feelings. Today, we’re digging into all of that: how we feel about summer, what makes summer uniquely hard for our families, and the parts of summer we still love anyway.A huge thank you to our sponsor for this summer season, Real Food Blends! Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!Links:Fill out our contact form to join upcoming discussion groups!Join The Rare Life newsletter and never miss an update!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.

Season 13 is coming to a close, and this season covered a lot of heavy, but necessary ground.In this finale episode, Madeline and Alyssa are joined by Caitlyn, a listener and mom to Miles, to look back on the episodes that were the hardest, most impactful, and most validating to hear. We’re also sharing listener reflections, talking through the clips from all 14 episodes, and discussing why this season felt especially deep for our community.And finally, we’re sharing a few personal and behind-the-scenes updates, including Madeline preparing to become a foster parent, Alyssa editing with a broken foot, and a peek at the summer mini episodes coming next.Thank you for listening, sharing your stories, and being part of The Rare Life community. We’re so grateful you’re here.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!

Most of us can’t be with our children 24/7. At some point, we often must hand off care of our children school staff, nurses, therapists, hospitals, family members, etc to help care for our disabled and medically complex kids. And honestly? That can feel terrifying.In this episode, we're exploring one of the hardest topics parents in this community navigate: preventing abuse and neglect for children who may not be able to fully communicate what happened to them. We talk about the fears parents carry, missed medical care and hospital concerns, building trust with other caregivers, red flags families watch for, and the real-life strategies parents use to try to keep their children safe.If you’ve ever wondered how to balance protection with independence, trust your gut when something feels off, or navigate the reality that you can’t always be there, we hope this episode gives you a little guidance to get started.Links:Fill out our contact form to join upcoming discussion groups!Join The Rare Life newsletter and never miss an update!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.

For many parents of disabled and medically complex children, “raising awareness”, especially on social media, can start to feel like another responsibility sitting on top of an already overwhelming life. Post more. Educate people. Share your child’s diagnosis. Explain disability better. But what actually changes when we do that… and what are we giving up in the process?In this episode, Alyssa and Madeline explore the tension many caregivers feel between wanting the world to better understand disability and wanting to protect their child’s privacy, energy, and family life. They talk about awareness versus advocacy, the pressure social media creates to constantly educate others, the guilt parents carry when they don’t share publicly, and how many families’ relationships with awareness evolve over time.If you’ve ever wondered whether sharing your child’s story is helping, hurting, healing, or just exhausting, this episode will give you a lot to think about.Links:Fill out our contact form to joinupcoming discussion groups!Join The Rare Life newsletter andnever miss an update!Listen to Ep. 100: Raising Awareness | DisabledChildren Don't Owe Society Anything!Listen to Ep. 219: Handling Questions fromStrangers About My Disabled Child!Follow us on Instagram @the_rare_life!Donate to the podcast or Contactme about sponsoring an episode.

For many families of disabled and medically complex children, school is rarely a simple decision. It’s a constant balancing act between medical needs, safety, transportation, therapies, staffing, inclusion, and what your child can realistically access.In this episode, Alyssa is joined by Rachel, a special education professional and fellow disability parent, to talk about the realities of navigating school options for medically complex kids. The types of schooling options available, the differences between these options, support shortages, IEPs, inclusion, and the emotional toll of having to constantly fight for the support your child is legally entitled to.If you’ve ever felt overwhelmed trying to figure out the “right” educational setting for your child, this episode is here to offer you some hope and clarity!Links:Fill out our contact form to joinupcoming discussion groups!Join The Rare Life newsletter andnever miss an update!Listen to Ep. 222: Intellectual Disabilities!Follow us on Instagram @the_rare_life!Donate to the podcast or Contactme about sponsoring an episode.

For most people, a trip to the ER is unexpected. But when your child has medical complexities, it’s often an inevitable and rhythmic part of life.Every time something seems off and feels like it’s progressing, you’re forced to make a gut-wrenching call: do we handle this at home, or do we go in?In this episode, we’re unpacking what those moments actually look like. From the fear that sits in the background of every illness, to the reality of navigating ER teams who don’t know your child, to the emotional whiplash of being hyper-focused in the moment and unraveling later. We talk about how these decisions evolve over time, what experience teaches you (and what it doesn’t), and why “better safe than sorry” doesn’t even begin to capture the full picture.And a big thank you to Functional Formularies, our sponsor for this episode.Links:Learn more about Functional Formularies!Join The Rare Life newsletter andnever miss an update!Fill out our contact form to joinupcoming discussion groups! Listen to Ep. 185: Medical Parent Trauma!Listen to Ep 170: Hospitalizations!Follow us on Instagram @the_rare_life!Donate to the podcast or Contactme about sponsoring an episode.