The Rare Life

Latest Episodes:

The Parable of the Pain Scale | The Ways Bearing Witness to Our Children’s Suffering Calibrates Our Pain Scales to an Entirely Different Level w/ Libby Holley (Rebroadcast) Jun 29, 2023

Show notes

We are often asked to rate our pain on a scale of 1-10 for medical professionals. Sometimes for ourselves, other times for our children. And it is often so hard to know what number to give our pain.

In this episode, mom Libby Holley shares how this pain scale can also be used to rate our emotional pain, and the ways it calibrates according to our life experiences. So many of us experience pain on a level we’ve never felt before as we become medical parents. Suddenly, what feels like an 8 for our friend may seem completely trivial—a 2 at best on our own personal pain scale. It can be hard to relate and empathize. Libby offers a perspective shift that allows us to remain connected despite this isolating difference in pain scales.

We also discuss the heartbreaking ways we see this exceptional pain tolerance in our children and how important it is to give our pain the gravity it deserves and to seek help.

*This is a rebroadcast of one of my favorite episodes of The Rare Life for you to listen to while we work on production for season 8, coming in August! If you’d like to discuss this episode with other members of The Rare Life community, we’ll be holding three different meetings run by our amazing group facilitators every Tuesday at 8pm in PST/CST/EST. Fill out our contact form to get the Zoom link each week!*

Links:

Check out adorable photos of Libby, Lennon, and fam on the website.

Follow Libby on Instagram.

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Join the Facebook group Parents of Children with Rare Conditions.

Donate to the podcast via Buy Me a Coffee.

Check out our sponsor BetterHelp for online licensed therapy.

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 Story of Claire (Rebroadcast) Jun 22, 2023

Show notes

Although Claire’s medical condition has many characteristics, for Katie and her husband they all pale in comparison to the heart-shattering fact that it is terminal.

In this episode, we laugh and we cry as mom Katie shares all about her adrenaline-junky four-year-old daughter Claire, her pregnancy and birth story, and the gut-wrenching moments of learning that their precious newborn would not survive childhood.

She also shares ways that she has become a stronger, more gratitude-filled and empathetic person because of Claire and the lethal nature of her diagnosis.

Trigger warning concerning childhood death.

Links:

Follow me on Instagram!

Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

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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!

Family Planning When You Have a Medically-Complex Child w/ Amanda Griffith-Atkins LMFT + 13 Special Guests (Rebroadcast) Jun 15, 2023

Show notes

When you have a child with a medical complexity or disability, so many things get flipped on their head. And one of those things is family planning. Something that may have seemed relatively simple and straightforward becomes muddled and complicated.

We wonder—rightfully so—if we have the mental and physical capacity to care for an additional human being. And if we choose to move forward with adding to our family, how can we endure the anxiety that would likely flood us during a subsequent pregnancy? And further complicating matters still, what if we’re a carrier for our child’s condition and could pass it on to other children as well?

In this episode, Amanda Griffith-Atkins and I tackle these very reasonable concerns and include the perspective from 13 parents, each one with a different decision and reasoning behind it.

Links:

Get full show notes and transcript here!

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Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

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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!

It’s All My Fault (Rebroadcast) Jun 08, 2023

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.

Links:

Follow me on Instagram!

Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

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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!

Living with Sleep Deprivation w/ Jill Arneson (Rebroadcast) Jun 01, 2023

Show notes

There are many reasons we lose sleep as parents of children with disabilities. Maybe our child requires nighttime medical care or monitoring, and we don’t have nighttime nursing. Perhaps we feel guilty for sleeping while they’re not. Or we are unable to sleep while our minds buzz with a never-ending list of tasks of care, of past trauma, and fear of the future.

In this episode, Jill shares what keeps her up at night and the things she does to try to get a little more sleep.

Links:

Ep. 25: EMDR Trauma Therapy w/ Rosey S.

Ep. 88: Numbing Out w/ Anna Smyth

Ep. 87: PTSD + Mental Health w/ Karley Henderson

Follow me on Instagram!

Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

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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!

Confessions of a NICU Nurse w/ Sam Keirsey, RN BSN (Rebroadcast) May 25, 2023

Show notes

NICU nurses do what we just can’t do for our babies—and that in and of itself is magical and special and makes me over-the-moon grateful whenever I think about it. And while I’m grateful for all nurses that care for my son, there are certainly nurses that are better at their jobs than others. Better at loving, better at caring, better at making the family’s experience as meaningful and positive as possible.

Sam Keirsey is one of those such exceptional nurses. In this episode, she shares some of her lows and highs, both of which are dripping with love for the babies and families she’s served. She’s held babies as they passed away when parents couldn’t make it in time, and she’s attended birthday parties of thriving NICU grads. With all the ups and downs, she insists that her job loving these babies is full of privilege and transformation.

Links:

Ep. 26: The NICU Experience, a solo episode.

Ep. 11: Embracing Your Therapy and Medical Tribe w/ Kari Harbath

Ep. 67: What Your Child’s Doctors Want You to Know but Don’t Tell You w/ Dr. Dominic Moore

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Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

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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!

127: Season 7 Finale + 3 Year Anniversary | How This Podcast Has Changed My Life w/ Juston Cheney May 18, 2023

Show notes

It’s the very last episode of Season 7! We have clips from every episode this season, listener take-aways, and a very special guest: my husband Juston. This finale is a little different from seasons past because we’re not just celebrating another season, it’s also the third anniversary of the podcast.

To honor that milestone, I’m answering a ton of questions with Juston from this community about what it’s like behind the scenes, how I plan and run the podcast, and how I handle the sometimes heavy topics and stories that I bring to you all week after week.

Not going to lie, this last season and planning for Season 8 have been a little tougher than previous seasons. But this podcast is a labor of love. It’s for all of us: those who wished we had something like this when our children first received their diagnosis and the families who will come after us who can hopefully find space and hope here, instead of feeling scared and alone. And my goal for the future is that we share this podcast far and wide so everyone who needs it will have access.

Finally, make sure you catch our exciting announcement about ways you can connect with other listeners over the summer! If you’ve ever wanted to chat about the topics we cover each week, you’re in luck! Thank you for being here these last three years, and I feel so honored to create even more episodes for you next season.

Links:

Fill out our contact form to be added to our email list for Discussion Groups!

Listen to Ep 114 about grieving intellectual disability with Marci Dunning.

Listen to Ep 124 about living in survival mode with Suzy Boubion.

Check out Ep 77: To Those Who Cannot Say, “I Wouldn’t Have Them Any Other Way” one of my favorites.

Listen to Ep 19 and Ep 20 with Katie Peterson about her daughter’s terminal diagnosis and anticipatory grief.

Connect with Rebekah, Andie, and Emily!

Follow me on Instagram!

Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

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!

126: Therapies | When to Scale Back and How to Do So w/ Andrea Loveday-Brown and Larkin O’Leary May 11, 2023

Show notes

Most parents, myself included, fall into this trap when we first bring our medically complex kids home: We want what’s best for them, and that usually feels every type of therapy we can get (OT, PT, Speech, and more!) And if some therapy is good, then more is great, right?!

But after months or years of running from one therapy session to another, often while juggling school, siblings, work, and homelife, it can become too much, and not just for us, but our kids that are supposed to be receiving benefit from these services.

So in today’s episode, I’m talking with Andrea Loveday-Brown of @centeringdisability and Larkin O’Leary from the Common Ground Society to talk about when –and how – to start limiting therapies and how that can benefit our kids and our families! More isn’t always better, and we’re going to dive into all the nuances around these tough decisions today.

Links:

Listen to Ep 9 of The Rare Life all about taking charge of your child’s medical team and therapy plan.

Follow Andrea on Instagram!

Follow Larkin on Instagram!

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Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

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!

125: Tips and Tricks for Traveling with Disabled Kids w/ Alyssa Nutile May 04, 2023

Show notes

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, Alyssa Nutile and I share the best tips and tricks from The Rare Life community, plus a few of Alyssa’s own tips from all the traveling she’s done with her daughter Gemma. 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:

Check out the blog section of our website for a list of our must-have items for traveling with a disabled child, our favorite child carriers, and more!

Visit our Youtube channel to see the video 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 and traveling.

Listen to Ep 66 with Falesha Johnson on how she travels with her daughter Cali, who was machine dependent at the time.

Follow Alyssa on Instagram!

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Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

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!

124: Suzy’s Story | Brain Injury, the Exhaustion of Living in Survival Mode, + Wondering If This Is the End Apr 27, 2023

Show notes

Life as parents of medically complex children is full of extremes: intense love for our children, deep exhaustion from handling their medical care, incredible resilience to keep going, and extreme anguish that comes with having to make decisions that none of us can even fathom until we find ourselves in that position.

Today’s episode with Suzy Boubion is so raw and so tender as we discuss some of those impossible choices we face as parents to medically complex children. She tells the story of her son Oliver’s brain injury during birth, how the experience of raising a medically complex child changed her relationships, including her marriage, and how the exhaustion of living in survival mode for years takes a toll on your mind and body.

And toward the end of the episode, we also touch on the topic of child loss and how Suzy is navigating her emotions and decisions that come along with that possibility for her own family. If that’s a sensitive topic for you, please listen with care.

Links:

Listen to Ep 33 of The Rare Life with palliative care worker Orley Bills.

Follow Suzy on Instagram!

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Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

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!