193 episodes
The Rare Life Madeline Cheney
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- Kids & Family
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5.0 • 126 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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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! -
157: Friendships with People Who Don’t Have Disabled Kids w/ Jillian Arnold
Friendship, especially with those who don’t have disabled children, gets more complicated once you’ve had your own child with disabilities. It’s not necessarily fair, but it doesn’t change the fact that we often end up interacting differently with friends we had before our children were born.
In this episode of The Rare Life, I’m joined by Jillian Arnold, host of her own disability parent podcast and mom to Roman and Stella, who both have ASMD (a.k.a. Niemann Pick Disease Type A/B).
We dig into all the aspects of befriending and maintaining friendships with parents who don’t have disabled children. We cover the logistical difficulties, the triggers that come up for us, the beautiful parts, and how to stay empathetic to those who are experiencing the world so differently from us.
This is a gem of an episode, and it was made possible by our generous sponsor Moog Medical. They are so dedicated to our children with medical complexity that they've created an entire Feeding Pump Guide to share with anyone who cares for your child to help operate and troubleshoot your Infinity pump.
Links:
Visit MOOG’s website to learn about all the resources they’ve created to support your tube-fed child (and you!)
Listen to Ep 151: Befriending Other Disability Parents.
Listen to Ep 95: Parable of the Pain Scale.
Listen to Jillian’s podcast Confessions of a Rare Disease Mama.
Visit Jillian’s website to raise funds to cure her children’s rare disease ASMD (a.k.a. Niemann Pick Disease Type A/B).
Follow Jillian on Instagram @confessionsofararediseasemama!
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! -
156: Should I Get a Divorce? Insight + Solidarity from Divorced Medically Complex Parents w/ Amanda Griffith-Atkins
Making the decision to leave your partner is no small thing, but sometimes, the rifts that come from the stresses of life as medically complex parents can erode our relationships.
So how do you know if divorce is an option, and where do you start if you’re exploring that possibility?
In this episode, Amanda Griffith-Atkins joins me to share advice on the unique issues surrounding divorce between parents of medically complex kids and read experiences shared from the community of other women who have already separated or divorced their partners. We talk through fears, hesitations, and some options that you might have if you feel like divorce is in your future.
Whether or not you’re considering separation or divorce, we hope you leave this episode feeling capable and empowered!
And a big thank you to our sponsor Hibi for making this episode possible! Hibi is an app that helps you organize, manage, and share your child’s medical information. Check them out here!
Links:
Visit Hibi’s website to download the app!
Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join!
Find a therapist who understands your life as the parent of a disabled child via Amanda’s therapist directory!
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.
If you’d like to reach out to any of the women who contributed to this podcast, you can find them here:
Abigail @gail.putmannn (its hard, there will be tears and a lot of fear but its so worth it. ace needs his dad)
Alex @_alexishome (confide in someone you can trust and do whatever you can to be able to say you tried it all no regret)
Susan @susiev76 (not in episode but welcomes messages)
Amber @ambysaslytherin (not in episode but welcomes messages)
@Johanna_holtz (cheating for 5 years, healing in heartbroken kind of way)
Sandra @_sandraviramontes_ (during covid totally stopped seeing him and now is super hands off, sometimes it works for parents to go half and half on expenses)
Mckenzie @Kenzie.and.jett (wasn’t much fight for our son. NICU for 350 days and brought him home)
Barby @Barslol88 (heaviness in my life, imagine if there were no children. would you still be there?)
Maddison ward @maddisonjward (last one, mic drop that I said I was supposed to read first, you may feel cemented together but its really just Velcro)
Andie @We.are.takingcare (let go of control and discuss everything and get it in writing)
And if you love this podcast, please leave us a rating or review in your favorite podcast app! -
155: Aneesa’s Story | A Terminal Diagnosis + Dark Clouds and Silver Linings
When her son Jeremiah was first born, Aneesa had no medical training or experience. But as it became clear that something was out of the ordinary with Jeremiah’s health, she did what so many of us do when our kids need support: she started advocating and asking questions. Eventually through her research and advocacy, her son was diagnosed with a rare life-limiting mitochondrial disease, TK2D.
In this episode of The Rare Life, Aneesa shares the new skills she had to learn as she was thrust into the medical world, the grim prognosis her family received about Jeremiah, and the bright spots that keep them going. Aneesa also shares why she’s so passionate about documenting Jeremiah’s life and how she’s raising her other three boys in addition to her medically-complex son.
This is a sweet, tender episode you won’t want to miss!
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 assistance in working with your insurance company to provide their top-tier nutrition to your tube-fed child!
Follow Aneesa and Jeremiah on Instagram @jeremiahgracentk2dwarrior!
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! -
154: Deaths in the Community | How it Affects Us + Our Relationship with the Parents w/ Rose Watson
As heart-breaking as it is, if you’ve been in the rare disease community for long enough, you probably know someone, maybe even someone close to you, who has lost a child. And because that potential reality looms large for so many of us, this loss can affect us as well.
In this episode, Rose Watson, whose daughter Lavender has Trisomy 18, joins me to discuss her experience of maintaining a relationship with a friend who lost a child and how that experience impacted her and her friend individually.
We also share thoughts from parents who have lost children on how they would like to be supported by their community (spoiler alert: don’t forget about their child or act like their child never existed), and finally we discuss the way deaths in the community reach far beyond just the families of these children.
This is a tender episode you cannot miss, and it was made possible by our generous sponsor Moog Medical. They are so dedicated to our children with medical complexity that they've created an entire Feeding Pump Guide to share with anyone who cares for your child to help operate and troubleshoot your Infinity pump.
Links:
Grab your copy of Moog’s Caregiver Feeding Pump Guide to keep on hand for nurses, family, or maybe even yourself!
Listen to our episodes on child loss and grief, Ep 130 on anticipatory grief, Ep 134 on Child Loss 101, and Ep 137 on life after child loss.
Follow Rose on Instagram @little.miss.seamstress!
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! -
153: Hurtful Things Loved Ones Say and Do | How it Affects Us + What to Do About It w/ Amanda Griffith-Atkins
Have you ever been in a conversation with someone close to you only to be cut to your core by their offhand commentary about your disabled child, their medical issues, or the life you and your child have? Friend, you are not alone.
In Ep 153 of The Rare Life, Amanda Griffith-Atkins, whose sone has Prader-Willis syndrome, joins us to address some of the hurtful comments we've received from those close to us. She gives us some helpful tips for navigating those uncomfortable interactions, mending certain relationships, and how to know when a relationship might not be worth repairing.
Because while hurtful words from our loved ones are often grounded in their own unresolved baggage... sometimes, we discover someone's true character, and it can be a relationship ender. This is one episode you won’t want to miss.
And a big thank you to our sponsor SupportNow.orgfor making this episode possible! Check out their website to get the exact support you need from you community!
Links:
Check out SupportNow.org to get the help you need during tough times!
Listen to Ep 94 on how our friends and family can support us.
Listen to Ep 148 on the family & friend’s perspective.
Listen to Ep 101 & Ep 102 to hear Tiffany’s story.
Follow Amanda @amanda.griffith.atkins!
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!
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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