The Rare Life

Latest Episodes:

94: Family + Friends | How to Stay Close When You Feel Worlds Apart w/ Chelsea Denham Aug 11, 2022

Show notes

When receiving a diagnosis for your child—or dealing with medical complications—it can feel like you’re suddenly thrust into a separate world than your family and friends. And this can be super distressing and disorienting at a time you need them most.

In this episode, Chelsea shares how her relationship with her family and friends has been impacted by the different life she leads with her disabled sons. We chat about the isolation we feel in knowing our friends and families have no idea what we go through. We also talk about ways we can try to be just a little more vulnerable with them and how to tell our family and friends what kind of support we want and need.

Links:

A huge thank you to our generous sponsor Moog Medical!

Access Moog’s 24/7 live support for current users of their products like the Infinity Pump.

Follow Chelsea on Instagram.

Follow me on Instagram.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Donate to the podcast via Buy Me a Coffee.

Check out our appointment day merch.

Check out our affiliate BetterHelp for online licensed therapy.

93: Chelsea’s Story | Airway Issues, a Dirty Baby, and Making Scary Medical Decisions Aug 04, 2022

Show notes

When her 6-year-old son Jace was born, they quickly recognized how difficult it was for him to breathe. A NICU stay, rare diagnosis, several intense surgeries, and 4 years later, they welcomed their second son Emmerson to the family. Once again, they were facing difficulty breathing, a NICU stay, and surgeries all caused by the same rare condition their older son has.

In this episode, Chelsea tells these stories and share how hard it is to make big medical decisions for her children because, so little is known about the rare conditions they have. We also discuss how blindsided they were when their second was born with similar issues, and the way that emergent medical situations with her sons affect her.

Links:

Follow Chelsea on Instagram @thiselegantlife.

Follow The Rare Life on Instagram @the_rare_life.

Check out adorable photos of Chelsea + fam!

A huge thank you to our sponsor Moog Medical.

Access Moog’s 24/7 live support for current users of their products like the Infinity Pump.

92: Season 6 Kickoff Jul 28, 2022

Show notes

We’re back with brand-new episodes of Season 6! In this short and sweet episode, host Madeline Cheney introduces the theme of the upcoming season and gives sneak peeks into the first four episodes of Season 6.

Links:

Follow me on Instagram.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Donate to the podcast via Buy Me a Coffee.

Check out our appointment day merch.

Check out our sponsor BetterHelp for online licensed therapy.

Jess’ Story | A Twinless Twin and Something to Prove (Rebroadcast) Jul 21, 2022

Show notes

Not every twin has a living sibling—and Lily is an example of this tragic phenomenon. Her sister, Autumn, passed away at 24-weeks gestation, and she was born a few days later. In this episode, mom Jess shares the pain of losing a child and of the struggles that Lily has had because of her premature birth.

Lily has a tracheostomy, is G-tube fed, and has damaged lungs due to her intubation during her 256-day NICU stay as she fought for her life. Lily almost died several times during her stay, but one time in particular has really stuck with her.

Jess also opens up about the guilt she holds because of the clotting disorders which ultimately led to Autumn’s death and Lily’s prematurity.

This is a rebroadcast of Ep. 37 of Season 3. Join us next time for Season 6’s kickoff episode!

Links:

Listen to Jess’ special topic epsiode about social media, released immediately after this one.

Follow Jess on IG here: https://www.instagram.com/lilyslittlelungs/

Follow me on IG here: https://www.instagram.com/the_rare_life/

Still Apart of Us, a Podcast about Stillbirth, and Infant Loss: https://stillapartofus.com/

The NICU Experience | An Initiation into Medically-Complex Parenting (rebroadcast) Jul 14, 2022

Show notes

For many parents, the NICU is an initiation into the medically complex world. Medical terminology is thrown around with assumed understanding, and tubes and cords protrude their precious infant.

Beyond that, the emotional rollercoaster endured pushes many parents past their limits—and yet here we are.

In this solo episode, I share a bit about what Kimball’s NICU experience was for us, with memories that are relatable for my fellow parents of NICU babes, and eye-opening for the less experienced.

This is a rebroadcast of Ep. 26 of Season 2.

Links:

Listen to Anna’s story episode, that released immediately after this one.

Listen to the Preface Episode here:

https://therarelifepodcast.com/show-notes/preface

Ep. 13: Feeding Tube Adventures:

https://therarelifepodcast.com/show-notes/ep-13-feeding-tube-adventures

Ep. 5: A List of Diagnoses:

https://therarelifepodcast.com/show-notes/ep-5-list-diagnoses-solo-episode

Donate to Ronald McDonald House Charities here: https://secure2.convio.net/rmhci/site/SPageNavigator/pw/Donation_Landing.html

Follow me on Instagram.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Donate to the podcast via Buy Me a Coffee.

Check out our appointment day merch.

Check out our sponsor BetterHelp for online licensed therapy.

Effie’s Story | Siblings, Italy, and a Next-Level Laugh (rebroadcast) Jul 07, 2022

Show notes

Effie knew something was “off” with Ford from the day he was born, four years ago. After four months of being blown off by his pediatrician, Ford was admitted to the children’s hospital where he was analyzed and given an official (and extremely rare) diagnosis. Effie was completely blindsided and crushed.

In this episode, Effie shares this experience of receiving Ford’s diagnosis. We also chat about the huge perspective-shift that comes along with a child with medical complexities—the little things are everything. Effie also talks about the precious relationship Ford shares with his younger sister Ezzy, as well as the bittersweet moments of watching Ezzy develop typically.

Effie Parks is the amazing host of the podcast Once Upon a Gene. You can find a link to her podcast in the show notes!

This is a rebroadcast of Ep. 41 from Season 3.

Links:

Listen to Ep. 42: Friendship and Inclusion for Our Children and Ourselves w/ Effie Parks, the episode released right after this one.

See photos of Effie + fam: https://therarelifepodcast.com/

Effie’s podcast Once Upon a Gene: https://effieparks.com/podcast

Follow Effie on Instagram: https://www.instagram.com/onceuponagene.podcast/

Follow me on Instagram: https://www.instagram.com/the_rare_life/

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Donate to the podcast via Buy Me a Coffee.

Check out our appointment day merch.

Check out our sponsor BetterHelp for online licensed therapy.

What Your Child’s Doctors Want You to Know, But Don’t Tell You w/ Dr. Dominic Moore, MD (Rebroadcast) Jun 30, 2022

Show notes

Although we often only see them for a brief 20-minutes at a time, our children’s doctors play a huge part in our children’s health and well-being. And depending on their bedside manner, we assume we know how much they care.

In this episode with Dr. Dominic Moore, chief of palliative care at the local children’s hospital, gives us insights into how much our children’s providers really care. He shares the pain and grief they feel when things take a turn for the worse for our children, and the triumph they experience when the opposite occurs. He also gives us much-needed reassurances in our role as our children’s caregivers.

This episode is a rebroadcast from Season 4.

Links:

Ep. 71: Confessions of a NICU Nurse w/ Sam Keirsey, BSN

Atypical Truth podcast.

The Lower Lights music group on Spotify.

Follow me on Instagram.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Donate to the podcast via Buy Me a Coffee.

Check out our appointment day merch.

Check out our sponsor BetterHelp for online licensed therapy.

Confessions of a Medical Mama w/ Anna Brown (Rebroadcast) Jun 23, 2022

Show notes

The parenting experience with a child with medical complexities can feel worlds away from those around us. There are so many aspects that no one knows or sees. In this episode, Anna Brown shares three of her infamous “Confessions of a special-needs mama” that she has a reputation for on Instagram.

We unpack three of her—and her followers’—favorites:

1. I am not stronger than you.

2. What happens when it stops being cute?

3. I wish your pity were replaced with empathy.

This is a rebroadcast of Ep. 46: Confessions of a Special-Needs Mama w/ Anna Brown from Season 3. We will be back to kick off Season 6 on July 28th.

Links:

Listen to Anna’s story episode, released just prior to this episode.

Listen to the episode about siblings, released just after this episode.

Follow Anna on IG: https://www.instagram.com/mothering_rare/

Follow me on IG: https://www.instagram.com/the_rare_life/

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Donate to the podcast via Buy Me a Coffee.

Check out our appointment day merch.

Check out our sponsor BetterHelp for online licensed therapy.

Medical Equipment| The Ultimate Hate/Love Relationship + How to Vacation With It All w/ Falesha Johnson (Rebroadcast) Jun 16, 2022

Show notes

Cali relies on her trach and feeding tube for life. And as most parents with children who are dependent on life-sustaining equipment, Falesha both loves and resents it. Our children would not be alive today without them, and yet we still can feel annoyed and resentful towards the hassle and fears they bring.

In this fun episode, Falesha advises NICU parents to take training seriously, shares both the how-to and the benefits of traveling with equipment in tow and laughs at the fact that we as parents are dependent on the machines too, but at more of an emotional level.

This episode is being rebroadcasted from Ep. 66 in Season 4.

Links:

Listen to Falesha’s story episode released immediately before this one.

Listen to Ep. 67, the episode released immediately after this one.

Listen to Episode 13: Feeding Tubes.

BetterHelp, online counseling affiliate link.

Let’s be friends on Instagram! @the_rare_life

Follow The Rare Life podcast on Facebook.

Follow Falesha on:

Instagram, @falesha11

YouTube Channel, https://www.youtube.com/channel/UC-UdvhoZdoYouPL40cue5vg

Blog, https://www.faleshajohnson.com/

It’s All My Fault (Rebroadcast) Jun 09, 2022

Show notes

Finding out I’m a genetic carrier for my son’s syndrome of CDPX1 was a very tough pill to swallow; and it has a whole slew of implications for my life.

It means I caused all of my son’s hugely challenging and life-threatening birth defects. And it also means that each of our children have a 50/50 chance of inheriting the unlucky genes.

Listen to find out what it was like to receive this life-changing news and what we’ve decided to do about it.

This is a rebroadcast of Ep. 22 of Season 2.

Links:

The episode that released right after this one Ep. 23: Jenny’s Story.

Follow me on Instagram.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Donate to the podcast via Buy Me a Coffee.

Check out our appointment day merch.

Check out our sponsor BetterHelp for online licensed therapy.