The Rare Life

Latest Episodes:

114: Grieving Our Children’s Intellectual Disabilities + Facing Our Internalized Ableism w/ Marci Dunning Feb 16, 2023

Show notes

Society’s values are slowly shifting away from a focus on physical beauty toward intellect instead. We’re taught that academic and intellectual achievement is so valuable, maybe even one of the most valuable things we can accomplish. On the surface, that might feel like a good thing, but where does that leave our children with intellectual disabilities?

In today’s episode, Marci Dunning shares with us her experience of learning that her daughter Freya has an intellectual disability. At first, she couldn’t believe that her precious, cheeky child who was full of personality could even have an intellectual disability because it seemed so different than the way intellectual disability is portrayed in media and society. But after a long journey to a diagnosis and confirmation of Freya’s intellectual disability, Marci has begun to face her grief and to unlearn the internalized ableism that plagues nearly all of us.

Marci explains that part of her grief isn’t simply about Freya’s disability, but also from the guilt of knowing that she spent so long viewing intellectual disability in a negative light. We also talk about the frustration of knowing that testing still doesn’t capture of full range of Freya’s capabilities and interests and how letting go of certain therapies allowed Marci and Freya to develop a closer relationship.

And finally, we discuss Marci’s acceptance that disability is part of life and that she and Freya have a full life anyway, even if she still feels some sorrow for the struggles Freya may face.

Links:

Listen to Ep. 77: To Those Who Couldn’t Say “I Wouldn’t Have Them Any Other Way”.

Listen to Ep. 9: Taking Charge of Therapy.

Follow Marci & Freya on Instagram!

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!

113: Blenderized Diets for Tubies | The Life-changing Health Benefits and How to Get Started w/ Cassie Krings and Hilarie Dreyer, RD Feb 09, 2023

Show notes

For years, Cassie and her tube-fed daughter Eloise tried to accept that vomiting, pain, and hospitalization was just part of tubie life. After all, that’s what they kept hearing from many medical professionals when Eloise had difficulty tolerating formula after formula. But as Cassie discovered, highly processed formulas aren’t the only option available for many tube-fed kids.

After working with Hilarie Dreyer, a registered dietitian who specializes in blenderized diets, Cassie was able to switch out the formula that made Eloise’s life so difficult to blends that she makes from whole foods at home. This change in food has been life-changing for Eloise’s overall health and her relationship with food by now being able to choose and help mix her own blends.

In this episode, I talk with both Hilarie and Cassie as we discuss all things blenderized diets, from what that actually means to what the research says about its health benefits. Cassie shares the story of how working with Hilarie and changing to a blenderized diet for Eloise improved life for her entire family. Hilarie and Cassie also share ways to integrate blends into your child’s feeds that can help the whole process feel less overwhelming.

Blenderized diets might not work for everyone, and it doesn’t have to be an all or nothing switch either! There are a ton of options when adding blends into your child’s diet, including shelf-stable blends made from whole foods from Functional Formularies. If you’ve been considering integrating more “real” food into your child’s diet, this episode is for you.

Links:

Visit Functional Formularies for formula made from whole food that can make switching to a blenderized diet that much easier.

Research about benefits of blenderized diets:

Visit the Feeding Tube Awareness Week website for more resources.

https://www.functionalformularies.com/researches/blenderized-enteral-nutrition-diet-study-feasibility-clinical-and-microbiome-outcomes-of-providing-blenderized-feeds-through-a-gastric-tube/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6660979/ - Health Outcomes and Quality of Life Indices of Children Receiving Blenderized Feeds via Enteral Tube

(paid research)https://aspenjournals.onlinelibrary.wiley.com/doi/10.1002/ncp.10493

(paid research)https://aspenjournals.onlinelibrary.wiley.com/doi/10.1002/jpen.1049

Follow Hilarie on Instagram.

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.

Transcript on the website.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

112: Abby’s Story | Skeletal Dysplasia, a Prenatal Diagnosis with Grim Hopes of Survival, + Ditching the Bubble Wrap Feb 02, 2023

Show notes

For the first part of Abby’s pregnancy with her son Jackson, everything was perfectly uneventful. But at her twenty-week ultrasound, her medical team discovered some unusual markers. This appointment set off a chain of visits, tests, and specialists that eventually ended in a diagnosis of a rare and life-threatening form of skeletal dysplasia called osteogenesis imperfecta.

In this episode, Abby and her family were thrown into the world of medically complex caregiving and advocacy, which sometimes included teaching other nurses and medical professionals how to care for their son. Abby tells us how, in the years since his birth, she has continued to advocate while also accepting that she can’t protect her son from every single injury and illness, but she can offer him new experiences, intense love, and a joyful life.

I can’t tell you just how much I love this story, and I can’t wait to share it with you.

Links:

Learn more about the sponsor Moog Medical’s Infinity Feeding Pump and their customer panel.

Listen to Ep. 82 which covers Kimberly’s experience with osteogenesis imperfecta.

Follow Abby on Instagram.

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 and download the research articles Hilarie cited on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

111: Season 7 Kickoff Jan 26, 2023

Show notes

We’re back for another season, and we’re focusing on disabilities and medical complexities again! We’ll cover managing symptoms, helpful organization hacks, trauma-versaries, grief and acceptance for our child’s disabilities, and more.

For the last six seasons, we’ve been using the same pattern and order for planning episodes, and I’ve been really comfortable with that structure. BUT I want to give even more parents an opportunity to share their stories and their wisdom, so season 7 is going to flow a little differently as we interview a new guest every episode.

In this episode, I’ll give you some details about the busy offseason, more insight into the new season structure, and sneak peeks for the first four episodes of this season. Thanks for joining me for this new season. I’m so excited to dive in with you!

Links:

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!

110: When Your Child is Inpatient at the Hospital During Holidays w/ Amanda Griffith-Atkins Dec 15, 2022

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 our other episodes in this holiday series with Amanda: Ep 108 & Ep 109.

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.

Donate to the podcast via Buy Me a Coffee.

Follow Amanda on Instagram.

Follow me on Instagram.

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!

109: Isolating at Home During Holiday Events to Avoid Illness w/ Amanda Griffith-Atkins Dec 08, 2022

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 our other episode in this holiday series with Ep 108: Why Holidays Kinda Suck with Amanda Griffith-Atkins.

Check out Ep 81: Health Anxiety which also features Amanda Griffith-Atkins.

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

Donate to the podcast via Buy Me a Coffee.

Follow Amanda on Instagram.

Follow me on Instagram.

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!

108: The Holidays + The Ways They Can be Tough for Disability Parents w/ Amanda Griffith-Atkins Nov 17, 2022

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:

Listen to Amanda’s previous episodes: Ep 81: Health Anxiety, Ep 85: On the “Disability Parent” Identity, & Ep: 99: Family Planning.

Listen to Ep 20: Anticipatory Grief with Katie Peterson.

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

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

Donate to the podcast via Buy Me a Coffee.

Follow Amanda on Instagram.

Follow me on Instagram.

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!

107: Season 6 Finale episode w/ Brittany Nov 10, 2022

Show notes

Brittany Steitz is back for the Season 6 finale! For the first time ever, every episode in this season was sponsored, which meant that we were able to grow our team and I was able to branch out creatively to bring you an even better podcast episode each and every week. This episode was so fun as we reflected on how the podcast has grown this last season.

In this episode, we listen to a short clip featuring snippets from every episode in Season 6. Then we’ve got three recorded voice messages from listeners where we get to relive our favorite parts of the season. Toward the end of the episode, Brittany and I recap some fun behind-the-scenes updates and how it’s been working with sponsors including this amazing community who sponsored the last two episodes this season! And finally, we’re sharing how I’ve changed up The Rare Life’s upcoming “off-season.”

I can’t wait for you to hear this episode, and I’m so grateful to have shared another season of The Rare Life with you. See you next season!

Links:

Listen to the episodes that you, as a community, sponsored: Ep 105: Brianna’s Story & Ep 106: Respecting Our NonSpeaking Children

Donate to the podcast via Buy Me a Coffee.

Contact me about sponsoring the podcast.

Favorite episode of Madhura & Alyssa - Ep 100: Raising Awareness

Favorite episode of Kahrissa - Ep 94: Family + Friends w/ Chelsea Denham and Ep 95: Parable of the Pain Scale

Follow each of us on Instagram! Me, Brittany, Kahrissa, Madhura, & Alyssa!

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!

106: Respecting and Honoring Our Nonspeaking Children w/ Brianna Christian Nov 03, 2022

Show notes

I think most of us have a vision of what our relationship with our children might look like when we first step into parenthood. We know what we want our kids to experience, how we hope to interact with them, and how we want to communicate with them to build a strong bond.

But, as parents of children with disabilities, we also know that these visions don’t always play out. In the case of nonverbal children, we have to learn how to use communication devices and become incredibly attuned to body language instead of having the verbal conversations we might be used to. It doesn’t change our hopes for our relationship with our children, but it does affect the way we communicate and build that bond with them.

In this special topic episode, Brianna Christian shares how she celebrates her son Isaac’s ability to communicate in his own unique way. She talks about all the ways she can see him growing and developing his personality even though he doesn’t meet “milestones” prescribed by the typical medical community. At the same time, she acknowledges the difficulty that her son faces when he has trouble expressing himself to others, and the frustration of trying to teach others to read his body language and understand his communication skills and respect his intellectual capabilities.

Through it all, Brianna’s main goal is to always honor and respect her son and the many complex feelings that he has as a three-year-old, even if the way he communicates looks unfamiliar to most. Allowing him to feel his feelings and letting Isaac guide Brianna about his needs has only strengthened the bond between the two of them.

Links:

Listen to Ep 105: Brianna’s Story.

Donate to the podcast via Buy Me a Coffee.

Follow Brianna on Instagram.

Follow me on Instagram.

Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

And thank you so much to our sponsor for this episode, Miranda Dobrowolski!

105: Brianna’s Story | Regression, Finding Purpose, and a Nurse-Turned-Medical-Mom Oct 27, 2022

Show notes

After struggling with fertility issues for years, Brianna was overjoyed to finally be pregnant, carry the pregnancy to term, and bring home her sweet baby Isaac. As a nurse herself, she understood the risks and complications and possibilities for things that could go awry, but there were never any indications during birth or pregnancy that something was amiss with her son’s health until several months after he was born.

After months of consultations, monitoring, blame from medical staff, and confusion, Brianna and her family were finally given a diagnosis for Isaac that had the potential to change the way they planned for their future family.

In this episode, Brianna tells us what it was like to feel like to have the sense that she was just missing something around her son’s health, especially after such a “perfect” pregnancy and delivery and the difficult journey to receiving his diagnosis.

Links:

Listen to Ep. 77: Wendy’s story.

Listen to Ep 99 on family planning after having a child with medical complexities.

Donate to the podcast via Buy Me a Coffee.

Follow Brianna on Instagram.

Follow me on Instagram.

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!