The Rare Life

Latest Episodes:

149: Annie’s Story | Physician Mom, Infertility, + Comparison Between Twins Feb 22, 2024

Show notes

Imagine spending years trying to get pregnant, following every protocol, and struggling through the heartache of not being able to build your family. Then, finally, after all the difficulty, you get to have two beautiful twin girls, and you think maybe, “This is it! The struggle is over!” But, because life isn’t always fair, you find out soon after that one of your twins has a life-altering rare disease.

This is the story of today’s guest, Dr. Annie Kuo. She shares her journey from infertility through the diagnosis of her 15-month-old daughter, Kenzie, with Prader-Willi syndrome. She shares how her experience as a physician shaped how she navigated her daughter’s care but didn’t necessarily make the whole process easier. And she vulnerably describes what it felt like to just never catch a break, and how those experiences have shaped the way she views life today.

This is one story episode you cannot miss, and a big shout out to our sponsor Functional Formularies who made this episode possible!

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!

Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come!

Follow Annie on Instagram @dranniekuo!

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!

Mini Episode: An Exciting Update for Our Family and Friends Fundraiser! Feb 20, 2024

Show notes

Less than a week into our Family and Friends fundraiser, and we have some super exciting news to share!

If you haven’t joined in on this fundraiser yet, we’ve got a list of ways you can get involved, plus some helpful tips to make it all a little easier!

Get more info at https://therarelife.org/fundraiser.

Thank you so much, friends!

Links:

Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come!

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!

148: The Family + Friends Perspective | What it’s Like to Watch us Navigate Life with Our Medically-Complex Children w/ Kassie Harbath Feb 15, 2024

Show notes

Our kids touch the lives of everyone around us, but especially our close family and friends. But we don’t always get to hear that perspective from the outside.

So on this episode of The Rare Life, we’ll finally get to hear from those close to us about what it was like to watch us endure trauma, explore parenthood with a medically complex child, and try to figure out the best ways to support us. Kassie Harbath, auntie of Sloan, a little girl with CHARGE syndrome, joins us to sort through all these complex feelings.
And, this episode is so well-timed, because we’re also starting our Family + Friends Fundraiser! Get more info on the fundraiser at https://therarelife.org/fundraiser.

Also, thanks to the many families and friends who have already donated and sponsored episodes, including the loved ones of Alyssa Nutile, mom of Gemma who has Pyruvate Dehydrogenase Complex Deficiency (PDCD). We couldn’t do it without you!

Links:

Join us for The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come!

Donate to the fundraiser here.

Hear the story episodes of the loved ones whose family and friends who shared today: Alyssa Ep 140, Libby Ep 95, Bek Ep 133, Marci Ep 114, Brianna Ep 105, Madhura Ep 117, Suzy Ep 124, Kari: Ep 123, Ep 10, and Ep 11.

Listen to Ep 146: The Dad Perspective.

Listen to Ep 104: How to Support the Parents of Disabled Children.

Read Show Up and Bring Coffee by Megan Amrich.

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.

Access the transcript on the website here.

147: Sex + Disability Parenting | All the Ways It Takes a Hit + Ways to Reclaim It w/ Amanda Griffith-Atkins Feb 08, 2024

Show notes

If you feel like you’re missing out on sexual intimacy in your life since entering your medically complex or disability parenting journey, you are not alone! We took a poll on Instagram and 90% of respondents said that their sex life had been impacted by medically complex life.

The reasons for this impact are endless: no time, no energy, no space, no emotional bandwidth, and the list goes on. So in this episode, we’re diving into specific thoughts and struggles from this incredible Rare Life community on the state of sexual intimacy in their lives.

Amanda Griffith-Atkins is once again here to help us sort through the conflicting feelings and causes behind these sex struggles, and she also shares several tips for reclaiming your sex life after disability parenting. This spicy episode is one that soooo many of us can relate to. Don’t miss it!

Links:

Visit Esther Perel’s website.

Learn more about sensate focus here.

Listen to Ep 99 on Family Planning.

Listen to Ep 131 on Chronic Stress.

Listen to Ep 138 on Therapy 101.

Follow Amanda on Instagram @amanda.griffith.atkins.

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!

146: The Dad Perspective w/ Derek Dizney, Zach Schneider, + Juston Cheney Feb 01, 2024

Show notes

When it comes to parenting children with rare disease, there’s often a lot of focus on the moms and their experiences around birth, the diagnostic process, and the work of giving care. One group we hear a lot less from? The dads.

So in today’s episode, we’re digging in to the Dad side of things. Joined by Derek, whose daughter has intractable epilepsy, Juston whose son has CDPX1, and Zach who daughter also has a rare genetic disorder, these dads share what it was like rebuilding their family structure with rare disease factored in. They share their feelings around responsibility, helplessness, and the ways that they and their partners each coped differently in the wake of their children’s diagnoses.

These dads are so vulnerable and honest with us, and this episode is an absolute must-listen for anyone with a rare disease dad in their life!

Links:

Learn more about our upcoming The Family + Friends Rare Disease Day Fundraiser and see how you can help The Rare Life continue for years to come!

Listen to Ep 97 of The Rare Life on radical acceptance.

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!

145: Ashley’s Story | Childhood Dementia, An Ended Marriage, + Learning to Live in The Present Jan 25, 2024

Show notes

When Ashley’s daughter Sadie was born, medical complexity took their family by surprise. A hospitalization post-birth eventually led to a life-limiting diagnosis of childhood dementia, and Ashley’s family was turned completely upside down.

In this raw and real episode of The Rare Life, Ashley shares what it was like to receive her daughter’s diagnosis, the ways this revelation altered her family, and how she’s found new and fulfilling relationships in her life since then. And while Ashley’s found a new way to look at life, she also shares openly and honestly about her grief and how she’s navigated through her complicated feelings.

This episode is so good and so tender. You don’t want to miss it. And a big thank you to MOOG, our sponsor for this episode!

Links:

Visit MOOG’s website to see the many ways they support families like ours!

Listen to Ep 130: Anticipatory Grief.

Listen to Ep 19: The Story of Claire.

Listen to Ep 51: Isolation vs. Connection.

Follow Ashley on Instagram @savingsadierae!

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!

144: Season 9 Kickoff | This Season’s Theme, Our Friends + Family fundraiser, & a Sneak Peek of Upcoming Episodes w/ Alyssa Nutile Jan 18, 2024

Show notes

It’s wild to think about, but we’re kicking off Season 9 of The Rare Life! And this season, it’s all about relationships. Relationships with your child, your spouse, your peers, your friends, your loved ones, and more! We’re not holding anything back, so some of these topics might get a little spicy!

Plus, we’re introducing our 2024 Friends + Family Rare Disease Day Fundraiser! It’s our first major fundraiser, and if it goes well, we could raise funds to keep running this podcast and supporting and uplifting you for the entire next year! And the best part is we’re not asking for a single cent from you, our listeners. Instead, we’re empowering you to tell your own story and offer an opportunity for those close to you to support you by supporting us. It’s a win-win!

As always, we’re closing out this episode with sneak peeks of the first four episodes of the season, and there are some juicy moments in just these little clips. We can’t wait to share them with you.

Thank you so much for being here and supporting The Rare Life for 9 seasons now! We’re so excited for this slate of episodes. Let’s dive in!

Links:

Follow Alyssa on Instagram @alyssanewt!

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 Your Child is Inpatient at Hospital During Holidays or Special Events w/ Amanda Griffith-Atkins [REPLAY] Dec 07, 2023

Show notes

There’s not much that feels worse than getting stuck in a hospital during the holiday season or having to miss a special celebration due to appointments or illnesses. Of course, there’s the trauma of being in the hospital again, but it’s also lonely, isolating, and demoralizing to feel like everyone gets to celebrate except for your family. You might feel pressure to experience the holiday early or find ways to celebrate in the hospital – or you might be too exhausted and just skip the event altogether.

Whichever way your family chooses to navigate these difficult circumstances is totally valid, and in this episode, Amanda and I share experiences from listeners on how they make it through these moments. We cover feedback from how awful it feels to be inpatient during big events to practical tips to celebrate when you’re in the hospital to encouragement on handling these tough situations in whatever way is easiest and safest for you and your family.

A big, big thank you to all our listeners who sent in tips, clips, and feelings to share with everyone. We used all of your feedback to create this episode, and we are so grateful!

Links:

Listen to Amanda’s other episodes on The Rare Life: Ep 135: How Our Careers are Affected, Ep 132: Self-Care, Ep 131: Chronic Stress, Ep 130: Anticipatory Grief, Ep 109: Isolating to Avoid Illness, Ep 108: Why the Holidays Suck, Ep 99: Family Planning, Ep 85: Disability Identity, & Ep 81: Health Anxiety.

Visit Icing Smiles for custom cakes when in the hospital.

Visit the Confetti Foundation for birthday boxes for hospitalized children.

Visit Little Wishes, a foundation that brings special moments to children who are inpatient.

Follow Amanda Griffith-Atkins on Instagram @amanda.griffith.atkins!

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!

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!

Isolating at Home During Holiday Events to Avoid Illness w/ Amanda Griffith-Atkins [REPLAY] Nov 30, 2023

Show notes

No one wants to spend the holidays feeling isolated or left out, but the reality for parents of medically complex/disabled children is that we sometimes have to skip events and gatherings for the safety of our kids. On top of that, we’re the ones stuck making the decision whether to stay home or go out, requesting accommodations and assurances to protect our kids, and trying to decipher if we’re “overreacting” out of anxiety or just being reasonably careful.

In today’s episode, Amanda Griffith-Atkins and I discuss how to manage and interpret anxious feelings you might be having around the decision to attend a holiday gathering and how to set realistic parameters to help you make that decision. We also share listener feedback and suggestions about how other parents made their decisions and how to approach uncomfortable conversations you might run into when declining invitations to holiday events.

We’re here to validate whatever decision you make for your family because we know how fraught the process can be, but also how frightening it is to feel like you might put your child in a risky health situation. Whatever you choose, we want to help you do it without guilt and with as little anxiety as possible.

Thank you to all the parents who shared their experiences about making these decisions! You all make this podcast possible!

Links:

Listen to Amanda’s other episodes on The Rare Life: Ep 135: How Our Careers are Affected, Ep 132: Self-Care, Ep 131: Chronic Stress, Ep 130: Anticipatory Grief, Ep 99: Family Planning, Ep 85: Disability Identity, & Ep 81: Health Anxiety.

Get a copy of Brené Brown’s book “The Gifts of Imperfection.”

Follow Amanda Griffith-Atkins on Instagram @amanda.griffith.atkins!

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!

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 Holidays + Why They Can Be Tough for Disability Parents w/ Amanda Griffith-Atkins [REPLAY] Nov 22, 2023

Show notes

When you have a child with a disability or other medical complexity, the holidays can feel like a minefield, as trauma triggers, anxiety, and grief for what we wish the holidays could have been for our families lurk around every corner.

And on top of that, having to manage schedules, special diets, gift expectations, and uncomfortable commentary from friends and family can be emotionally and physically draining. The season often leaves parents of disabled children feeling left out, over-worked –and occasionally– like the celebrations might just be more trouble than they’re worth.

In today’s episode, Amanda Griffith-Atkins and I discuss listener feedback and contributions about how complicated the holiday season feels for parents of disabled children, suggestions for how to make the holiday season feel just a little bit more manageable, and how adjusting our expectations has made a big difference for each of our families.

Links:

Join the Sticker Club and help us produce Season 9 coming in January!

Listen to Ep 20: Anticipatory Grief with Katie Peterson.

Check out Ep 104: How to Support Parents of Disabled Children.

Listen to Ep 99: Family Planning with Amanda-Griffith Atkins.

Listen to Ep 132: Self-Care with Amanda-Griffith Atkins.

Listen to Amanda’s other episodes on The Rare Life: Ep 135: How Our Careers are Affected, Ep 131: Chronic Stress, Ep 130: Anticipatory Grief, Ep 85: Disability Identity, & Ep 81: Health Anxiety.

Thank you to our listeners who sent in recordings: Heather, Maddison, and Lysa!

Follow Amanda Griffith-Atkins on Instagram @amanda.griffith.atkins!

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!

Access the transcript on the website here.