The Rare Life

Yes, disability parenting changes us, but experiences we bring into disability parenting shape the way we navigate this life too!

In today's episode, we're unpacking the baggage we bring into disability parenting, from mental health and childhood trauma to family relationships, religion, and our own experiences with disability. Along with stories from parents in our community, we explore how these experiences influence everything from trusting caregivers to advocating for our kids.

We also dig into how our past can make certain parts of this life harder, give us tools to navigate it, or sometimes both. And why even years of experience with disability can't fully prepare you for parenting a medically complex child.

A huge thank you to our sponsor, Real Food Blends!

Links:

See our sticker designs this week on Instagram ⁠@the_rare_life⁠!

Join The Rare Life newsletter and never miss an update!

Learn more about our sponsor Real Food Blends!

Listen to Ep. 215: Behaviors | Isolation, Guilt + Why It's Not About "Control."

Listen to Summer Mini #7: Why Asking for Help Feels So Hard.

Listen to Ep. 227: Abuse and Neglect Safeguards | Who We Can Trust + How to Protect OurDisabled Children.

Listen to Ep. 188: Belief Systems + Ways They're Affected by Disability Parenting.

Listen to Ep. 40: Wendy + the Sibling Experience.

Listen to Ep. 235: Ways Our Identity is Impacted by Having a Medically-Complex Child.

Listen to Ep. 135: Careers + Family Roles | The Ways They've Been Impacted by DisabilityParenting + The Resentment We Feel.

Fill out our contact form to join upcoming discussion groups!

Donate to the podcast or Contact me about sponsoring an episode.

Season 13 is here, and this time the focus is on our children’s disabilities themselves.

This season, we’ll be talking about things like navigating surgeries and procedures, trachs and vents, behavioral diagnoses, schooling options, sexual health and safety, feeling judgment, and more. As always, there will be story episodes woven throughout the season, featuring parents sharing their experiences in their own words.

We’re also sharing a few updates in this episode, including how hosting will look this season, details about our February Friends & Family Fundraiser during Rare Disease Month, and discussion groups, including the launch of our first international group.

Finally, we’re wrapping up this season opener with clips from the first few episodes. Don't miss it!

Links:

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Fill out our contact form to joinupcoming discussion groups!

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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 usa rating or review in your favorite podcast app!

Did my body fail my child? Did I do something wrong? Could I have prevented this?

You don't have to be a genetic carrier to grapple with the complex feelings around whether you somehow caused your child's disabilities or medical complexities. So many of uscan carry this uncertainty and sometimes even unspecified guilt around these feelings.

In today's episode, we're digging into these complicated feelings, along with experiences shared by parents in our community. From finding out you're a genetic carrierto birth injuries, medical decisions, and spontaneous genetic mutations, we talk about the many different ways these feelings pop up for parents.

And a big thanks to our sponsor for this episode, themakers of the incredible documentary, The Zebra & The Bear!

Links:

Watch The Zebra & The Bear

Listen to Ep. 22: It's All My Fault.

Listen to Ep. 191: Abortion + Parents of Disabled Kids.

Listen to Ep. 77: To Those Who Cannot Say, "I Wouldn't Have Them Any Other Way"

Fill out our contact form to join upcoming discussion groups!

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 withRare Conditions.

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

Who are you when so much of your life revolves around caring for your child? For parents of disabled and medically complex kids, our identities can shift in some pretty significant ways, and figuring out who we are in the midst of it all isn't always easy.

In today's episode, Madeline and Alyssa dig into the ways disability parenting shapes our sense of self. We talk about grieving parts of who we used to be, discovering new things about ourselves, and what it looks like to embrace an identity we never expected to have.

We also explore the pressure to fit a certain mold as a disability parent, how our identities become intertwined with our children's, and what happens when caregiving is a lifelong role. It's a big, complicated topic, and one that looks a little different for everyone!

Also, a big thank you to Functional Formularies, our sponsor for this episode.

Links:

Learn more about Functional Formularies!

Listen to Ep 85: Should A Child’s Disability be Part of Their Parent’s Identity?

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When Carolina’s daughter Cruz was just days old, newborn screening revealed she had maple syrup urine disease. Almost overnight, Carolina went from first-time mom to managing hospital stays, oxygen, G-tube feeds, and a condition that could become dangerous very quickly.

In today’s episode, Carolina shares what those early years looked like, including the hypervigilance, the pressure to get everything exactly right, and the fear that if she relaxed even a little, something bad would happen.

We also talk about the decision to pursue a liver transplant after years of managing Cruz’s condition, and what life has looked like on the other side. From finally sharing cultural foods with Cruz to finding snack crumbs in the car seat, Carolina reflects on the small, ordinary things that can feel huge after years of medical complexity.

Links:

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Follow Carolina on Instagram @carolq14!

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A hospital admission. A seizure. A certain time of year. Sometimes your body can react to medical trauma long after the moment itself has passed. But when does that become PTSD, and what does that look like when the trauma is tied to your child’s medical care?

In today’s episode, Amanda Griffith-Atkins joins us to break down the difference between PTSD, post-traumatic stress symptoms, and other trauma responses, plus why things like hypervigilance, avoidance, feeling trapped, and physical reactions to reminders can show up so strongly for medical parents.

We also dig into what makes trauma especially complicated when you have to keep returning to the hospital or facing new medical crises, how treatment options like EMDR and medication can help, and why you don’t need an official PTSD diagnosis for your trauma to deserve attention.

And a big thanks to our sponsor for this episode, themakers of the incredible documentary, The Zebra & The Bear!

Links:

Watch The Zebra & The Bear

Listen to Ep 185: Medical Parent Trauma.

Fill out our contact form to join upcoming discussion groups!

Join The Rare Life newsletter and never miss an update!

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.

Amanda’s Episodes:

81: Health Anxiety

85: Should A Child’s Disability be Part of Their Parents’ Identity?

99: Family Planning

108: Holidays + Disability

109: Isolating During Holidays

110: Inpatient During Holidays

130: Fearful of Childloss

131: Chronic Stress + Our Bodies

132: When Self-Care Gives Us the Swears

135: Ways Career + Family Roles Can Be Affected by Disability

142: What If My Disabled Child Outlives Me?

147: Sex + Disability Parenting

153: Hurtful Things Loved Ones Say and Do

156: Should I Get Divorced?

159: Mental-Load Sharing with Your Partner

171: Financial Strain

182: Hobbies

189: Grief in Disability Parenting

203: Strengthening Marriage

222: Intellectual Disabilities

Exercise can be a powerful coping tool, a way to feel stronger, and something that improves our mental health as parents of disabled children. But for those in our community, it can also be hard to access, hard to sustain, and just one more thing on our never-ending to-do list.

In today’s episode, we’re talking about that tension: the ways exercise has helped so many parents cope with stress, anger, trauma, and the physical demands of caregiving, alongside the very real barriers of time, energy, money, childcare, and hospital stays.

We also dig into body image, identity, losing routines you once loved, and why “just make it a priority” doesn’t capture the reality of caregiving. No matter your relationship to exercise, this episode has something for everyone.

Links:

Listen to Ep. 142: What If My Disabled Child Outlives Me?

Fill out our contact form to join upcoming discussion groups!

Join The Rare Life newsletter and never miss an update!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

Scrolling. Comfort shows. Exercise. Reading. Keeping yourself so busy you don’t have time to think. Numbing out can look a lot of different ways.

In today’s episode, we’re talking about why medical parents numb out, especially during stressful seasons, before and after scary medical moments, and after long days of being “on” for everyone else.

We also dig into the difference between numbing out and dissociation, how to tell when distraction is helping versus becoming avoidance, and why sometimes giving your brain a break is exactly what you need.

Also, a big thank you to Functional Formularies, oursponsor for this episode.

Links:

Learn more about Functional Formularies!

Listen to Ep 182: Hobbies for Disability Parents.

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Donate to the podcast or Contact me about sponsoring an episode.

When your first child is medically complex, your experience can look very different from a “typical” parent. But sometimes, that’s only really apparent in hindsight.

In today’s episode, we (finally!) have Amanda Griffith-Atkins on to share the story of her and her son Asher. From the first inkling that something wasn’t quite right to navigating conflicting messages and fears about the future to what her life looks like now seventeen years later, Amanda shares it all.

We also dig into that moment where you realize you have to share diagnostic news with your friends and family, how having typical children later brought up grief for moments she and Asher missed out on, and how the way disabled children are portrayed in medical settings influences parents and can contribute to fear.

This episode has it all! You won't want to miss it.

Links:

Check out Amanda's past episodes on TRL!

81: Health Anxiety

85: Should A Child’s Disability be Part of Their Parents’ Identity?

99: Family Planning

108: Holidays + Disability

109: Isolating During Holidays

110: Inpatient During Holidays

130: Fearful of Childloss

131: Chronic Stress + Our Bodies

132: When Self-Care Gives Us the Swears

135: Ways Career + Family Roles Can Be Affected by Disability

142: What If My Disabled Child Outlives Me?

147: Sex + Disability Parenting

153: Hurtful Things Loved Ones Say and Do

156: Should I Get Divorced?

159: Mental-Load Sharing with Your Partner

171: Financial Strain

182: Hobbies

189: Grief in Disability Parenting

203: Strengthening Marriage

222: Intellectual Disabilities

Fill out our contact form to join upcoming discussion groups!

Join The Rare Life newsletter and never miss an update!

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.

Season 14 is here, and this time the focus is on how raising a disabled or medically complex child impacts us as people.

This season, we’ll be talking about things like anxiety, PTSD, identity, feeling like your body failed your child, numbing out and dissociation, exercise, and being seen as a “Debbie Downer” when you’re honest about the realities of this life. As always, we’ll also have story episodes woven throughout the season, including a long-overdue story episode with Amanda Griffith-Atkins.

We’re also sharing some behind-the-scenes updates in this episode, including how Madeline and Alyssa are splitting hosting and production this season, our first in-person board retreat in Maine, and a little of what we’ve been up to over the summer.

Finally, we’re wrapping up this season opener with clips from the first few episodes. Don’t miss it!

Links:

Access the NICU Survival Guide here or at https://therarelife.org/nicuguide.

Listen to Ep 81: Health Anxiety.

Listen to Ep 85: Should A Child’s Disability be Part of Their Parent’s Identity? w/ Emily Ladau.

Fill out our contact form to join upcoming discussion groups!

Join The Rare Life newsletter and never miss an update!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

It’s finally here! For the last year and a half, we’ve been working on this project to be a big hug for NICU families from parents who just get it.

In this episode, we’re sharing our NICU Guide for the first time, why we created it, who it’s for, and how you can help get it into the hands of families who need it the most.

If you’d like to help, send us a message on Instagram, onhttps://therarelife.org/contact or by emailing us directly at team@therarelife.org.

A huge thank you to our sponsor for this summer season, Real Food Blends!

Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!

Links:

Access the NICU Survival Guide here.

Get involved with distribution efforts by emailing us team@therarelife.org.

Fill out our contact form to join upcoming discussion groups!

Join The Rare Life newsletter and never miss an update!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

Imagine this: You’ve just finished going through the diagnostic process for your child’s rare disease. You’re trying to find your new normal. And in the midst of all this, you continue to uncover your own medical complexities.

That story isn’t foreign to Sarah, our guest in today’s episode. She shares both her and her daughter’s diagnostic journey, how that impacts their life in unique ways, and why she’s ultimately thankful to be able to understand her daughter’s struggles.

A huge thank you to our sponsor for this summer season, Real Food Blends!

Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!

Links:

Fill out our contact form to join upcoming discussion groups!

Join The Rare Life newsletter and never miss an update!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

Parenting a medically complex child without a partner or co-parent can bring a new level of difficulty.

From managing the financial realities of a solo parent household to the emotional weight of making all the decisions on your own to the uncertainty of who would care for your child if something happens to you, we’re covering what makes solo medical parenting a little different from a partnered parenting experience. (And why it’s unfortunately still relatable to some parents who technically have partners too.)

A huge thank you to our sponsor for this summer season, Real Food Blends!

Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!

Links:

Fill out our contact form to join upcoming discussion groups!

Join The Rare Life newsletter and never miss an update!

Listen to Ep 156: Should I Get a Divorce?

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

As parents taking care of disabled and medically complex kids, we could probably use a little more help and support than the average person... But that doesn’t make it easy to ask for it.

From guilt to societal pressure to simply not having anyone you can trust for support, we’re digging into why help is just so hard to ask for.

A huge thank you to our sponsor for this summer season, Real Food Blends!

Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!

Links:

Fillout our contact form to join upcoming discussion groups!

Join The Rare Life newsletter and never miss an update!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

As our disabled and medically complex children grow and mature, caring for and navigating their sexual health can be a tricky topic.

From appropriately navigating sexual activity, consent, basic hygiene and even more complicated topics like birth control and how puberty can bring about new health complications, we’re breaking down a ton of different sexual health aspects in this episode.

A huge thank you to our sponsor for this summer season, Real Food Blends!

Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!

Links:

Fill out our contact form to join upcoming discussion groups!

Join The Rare Life newsletter and never miss an update!

Follow Amanda on Instagram @amanda.griffith.atkins!

Follow Jill on Instagram @jill.arneson!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

Clinical trials are so important. They’re how new therapies and treatments and cures are developed for diseases, and how we update our medical knowledge. At the same time, they aren’t without risk for our kids and our families.

So, how do you decide whether it’s worth it? We’re breaking down that question with pros, cons, and personal experiences.

A huge thank you to our sponsor for this summer season, Real Food Blends!

Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!

Links:

Fill out our contact form to join upcoming discussion groups!

Join The Rare Life newsletter and never miss an update!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

Nature can be healing. But when you have a disabled or medically complex child, getting outside can also be complicated.

Today, we’re talking about the ways nature grounds us, the grief that can come up when it is not accessible to our kids, and the small, beautiful ways our families still find their own version of outside.

A huge thank you to our sponsor for this summer season, Real Food Blends!

Real Food Blends are the only 100% real food meals that are ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!

Links:

Fill out our contact form to join upcoming discussion groups!

Join The Rare Life newsletter and never miss an update!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

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, we share the best tips and tricks from The Rare Life community. 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:

Visit our Youtube channel to see thevideo 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 andtraveling.

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

Follow us on Instagram @the_rare_life!

Fill out our contact form to join upcoming discussion groups!

Join The Rare Life newsletter and never miss an update!

Donate to the podcast or Contact me about sponsoring an episode.

The dads deserve a village too.

In this Father’s Day mini episode, Madeline talks with Lizzy of Wonders of Wally about her poem, The Forgotten Father, and the quiet, crushing ways dads are often expected to carry everything without being seen.

A huge thank you to our sponsor for this summer season, Real Food Blends!

Real Food Blends are the only 100% real food meals that are ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!

Links:

Listen to Ep 146: The Dad Perspective.

Fill out our contact form to join upcoming discussion groups!

Join The Rare Life newsletter and never miss an update!

Follow Lizzy on Instagram @wonders_of_wally!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.

It’s summer! But when you have a disabled or medically complex kids, this season can bring with it many, many mixed feelings.

Today, we’re digging into all of that: how we feel about summer, what makes summer uniquely hard for our families, and the parts of summer we still love anyway.

A huge thank you to our sponsor for this summer season, Real Food Blends!

Real Food Blends are the only 100% real food meals thatare ready-to-feed for people with feeding tubes. Offering 8 different meals and 1 snack for adults & kids, it's the closest thing to homemade blenderized tube feeding. Learn more at realfoodblends.com!

Links:

Fill out our contact form to join upcoming discussion groups!

Join The Rare Life newsletter and never miss an update!

Follow us on Instagram @the_rare_life!

Donate to the podcast or Contact me about sponsoring an episode.