By Madeline Cheney
5
126126 ratings
The podcast currently has 202 episodes available.
After learning to accept and manage her younger daughter’s disabilities, Vanessa thought she had a pretty good understanding of what it was like to raise a child with rare medical issues. But a diagnosis of childhood lymphoma for her older daughter turned all those notions upside down.
In this short catch up with Vanessa, she’s sharing the way that childhood cancer completely changed the way Vanessa looks at raising children with medical complexity. She shares the toll this diagnosis took on their family, and how they’ve all been trying to recover in the past year.
Also, huge thank you to our sponsor Functional 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!
Listen to Ep 69: Vanessa’s Story and Ep 70: Accessibility and Ableism.
Follow Vanessa on Instagram @vanessamcleod_!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
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!
Birthdays, as we understand them societally, are a time
In this episode, we’re sharing all your thoughts and feelings as a community around birthdays: the joy, sorrow, and everything in between.
Also, huge thank you to our sponsor Functional 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
Listen to our episode on being inpatient during the holidays.
Listen to our episode on isolating during holiday events.
Listen to our episode on navigating the holidays with medically complex kids.
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
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!
If you’re thinking about traveling with your disabled or
In this episode, we’re sharing the top ten things you
Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food
Links:
Visit the Functional Formularies website and get
Listen to Ep 127 on traveling with our disabled children.
Read our list of Top 5 Travel Carriers!
Read the original "10 Must-Haves for Traveling with a
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
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!
If you’re thinking about traveling with your disabled or
In this episode, we’re sharing the top ten things you
Also, huge thank you to our sponsor Functional Formularies! They make incredible, nutritious food
Links:
Visit the Functional Formularies website and get
Listen to Ep 127 on traveling with our disabled
Read our list of Top 5 Travel Carriers!
Read the original "10 Must-Haves for Traveling with a
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
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!
When we first start out in this rare life, it’s often terrifying. Everything is coming at us so fast, and sometimes you have to wonder: does it ever get better? Do things ever even out? It might feel impossible in those scary early days, but looking back, many of us have found a new perspective since then.
Today, I’m sharing thoughts from this community on what they wish they could go back and say to that earlier version of themselves who was just beginning on their medically complex journey.
I’m so excited to kick off our summer minis with this heart-warming episode.
Also, huge thank you to our sponsor Functional 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!
Read
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill
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
We’re finally rounding out Season 9, and what
In this episode, 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 9. We’re also sharing the most popular episodes of the season, just for some comparison (it’s not always the ones you might expect!)
Finally, we’re giving you a glimpse into Season 10 and the all-new summer format we’re trying out, as we publish some lighter mini-episodes in the off season this summer.
Thank you so much for being here and supporting The Rare Life for 9 seasons now! We would not be here without you. Let’s dive in!
Links:
Follow Alyssa on Instagram @caffeinated_caregivers!
Follow us on Instagram @the_rare_life!
Donate to the podcast or Contact me about sponsoring an episode.
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
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!
When you have a medically complex child, you probably have some realization that the experience you have with your child isn’t “typical.” But sometimes, it’s hard to understand just how different from the “norm” it was, until another child comes along – particularly one without disabilities or medical complexities.
In this episode, Brianna, a mom of disabled son who went on to have another nondisabled child, joins me to discuss how vastly the experience has been from one child to another. We also play audio clips from listeners as they share their own grief, joy, and insights that came up for them after having a nondisabled child after their disabled child.
And we end the episode by reiterating the honor and privilege it is to be able to raise our nondisabled and disabled children alongside each other, while still the conflicting emotions that come up for us.
This episode is so poignant and full of so many thoughtful reflections. Don’t miss it!
Links:
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Listen to Brianna’s story in Ep 105 and Ep 106.
Listen to Ep 99 on Family Planning.
Follow Brianna on Instagram @brianna.alcox!
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
After Ashley Smith’s son Deacon was admitted to the NICU, and one thing after another cascaded out of control with his care, she found herself literally screaming in the nursery “THIS IS NOT MY PLAN!”
While not all of us have screamed this out loud, so many of us have had a similar breaking point, where the weight of fear and grief and lost expectations bear down on us. In this episode, Ashley shares what it was like to navigate this complex grieving process in her own family after her son was diagnosed with a rare syndrome.
She shares what her family grieves the most (and it’s a little surprising), how her disabled and non-disabled child interact and grow together, and what it’s been like for their family as she continued her career and her husband stayed home as a full-time caregiver for their children.
This episode has ALL the feels. Let’s dive in!
Links:
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Follow Ashley on Instagram @ashleypaigesmith!
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!
Nothing breeds resentment faster than one member of a romantic partnership feeling like they're pulling all the weight in one area of life. And when it comes to the parents of medically complex kids, that resentment can compound even faster, especially as the mental load of navigating medical care often falls onto one partner. (Let’s be real: it’s usually the mom.)
In this episode, we’re diving into this topic of sharing the mental load – and how we can make that load-sharing a little more equitable. Amanda Griffith-Atkins and her husband join me to pull back the curtain on what it was like for them to find a better way to share the mental load that comes with parenting their medically complex child.
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They share the ways they improved their communication, helped each other take equal responsibility and ownership of medical decisions, and built trust that they could each handle situations that would spring up suddenly. Amanda also offers some actionable tips for other families with medically complex children.
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If you’ve been trying and struggling to find a balance that works for your family, this is an episode you can’t miss.
Links:
Get the book “Fair Play” by Eve Rodsky.
Listen to Ep 81 with Amanda on health anxiety.
Follow Amanda on Instagram @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!
Before she had her son, Serena was already a pediatric SLP, business owner, and disability advocate who spent her time empowering families to understand and become more comfortable with their children’s disabilities. So, she was prepared for anything, or so she thought.
But as it turns out, no amount of education or experience can prepare you for the moment your child receives a diagnosis for a disease that will eventually kill them.
In this episode, I sit down with Serena Murison, SLP and owner of Play Spark, as she shares the story of discovering that her son Rudy has Lama2 Muscular Dystrophy, a disease that is progressive and life-limiting.
Serena walks us through the emotional rollercoaster of her son’s first few months, as well as the conflicting feelings that have come up for her in the way that she both embraces her son’s disability and grieves the pain of knowing his disease will likely take his life.
This episode is SO REAL and raw. It’s one you can’t miss!
Links:
Get a copy of “The Power of Now” by Eckhart Tolle.
Get a copy of “Demystifying disability” by Emily Ladau.
Get a copy of “NeuroTribes: The Legacy of Autism and the Future of Neurodiversity” by Steve Silberman.
Listen to Ep 97: Melissa’s Story.
Listen to Ep 77: To those who cannot say I wouldn’t have them any other way.
Visit Serena’s website, Play Spark.
Follow Serena on Instagram @play_spark!
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!
The podcast currently has 202 episodes available.
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