The Rare Life

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.
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.

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.