198 episodes
The Rare Life Madeline Cheney
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- Kids & Family
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5.0 • 129 Ratings
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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.
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Summer Mini #1: What We Wish We Could Go Back and Tell Ourselves
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
the original “What We Wish We Could Go Back and Tell Ourselves” blog post.
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! -
162: Season 9 Finale | A Season of Growth, Listener Thoughts + Summer Mini-Episodes w/ Alyssa Nutile
We’re finally rounding out Season 9, and what
a season it’s been. The topic of this season was relationships, and perhaps as expected, the episodes this season were weighty, tender, and so touching. And besides the production of the podcast, we were busy coming into our own with some big milestones for The Rare Life as a nonprofit with grant submissions and running our first major fundraiser.
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! -
161: Having a Nondisabled Child After Your Disabled Child + Conflicting Feelings That Brings w/ Brianna Alcox
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
review in your favorite podcast app! -
160: Ashley Smith’s Story | Sibling Dynamics, Nontraditional Gender Roles, + Not Knowing What to Grieve
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! -
159: Sharing the Mental Load with Your Partner in Disability Parenting w/ Amanda Griffith-Atkins + Will Atkins
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! -
158: Serena’s Story | Disability Advocate Turned Disability Parent, a Degenerative Diagnosis, + the Power of Now
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!
Customer Reviews
A belonging I longed for
Thank You Madeline, so much for The Rare Life. Your content touches more people than you may think. I am a mother of a medically complex child, though he does not have a rare diagnosis of any kind. I had a complicated pregnancy and traumatic birth with my son Vincent, who arrived unduly early at 25 weeks gestation. Due to his very early arrival, he has a laundry list of diagnoses. He’s now 17 months and I only recently saw “medically complex child” written in his medical record. Interestingly enough, it immediately made me think of The Rare Life and I scanned for an episode I could relate to and began to listen [once again].
Being the mother of a micro-Preemie has plenty of challenges, and while I know we’re extremely lucky that our son will grow out of most of those challenges; for the time being listening to other Momma’s of medically complex kiddos on your show has made me feel seen and heard in a way that I just haven’t found in my own community.
Thank you for your thoughtful content and the time you take to find experts/personal stories that resonate so much for us Mommas of medically complex kiddos.
5-Star Review - Dr. Tay
I love this podcast because of the honest and authentic conversations Madeleine brings to the table. As a licensed psychologist that works with neurodivergent children, it makes my heart so full that there are resources like this podcast for all families to listen to!
Nicu nurses
I am a nicu nurse. It was so nice to hear how so many of us feel. And what parents can expect. I am retired now but I still miss the babies and the families I got close too. It is a privilege to take care of these little babies who fight to live. And make no mistake we do love the babies I mean real love.
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