The Rare Life

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?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 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:Fill out our contact form to join upcoming discussion groups!Join The Rare Life newsletter and never miss an update!Follow Carolina on Instagram @carolq14!Follow us on Instagram @the_rare_life!Donate to the podcast or Contact me about sponsoring an episode.

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 BearListen 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 Anxiety85: Should A Child’s Disability be Part of Their Parents’ Identity? 99: Family Planning108: Holidays + Disability109: Isolating During Holidays 110: Inpatient During Holidays130: Fearful of Childloss 131: Chronic Stress + Our Bodies 132: When Self-Care Gives Us the Swears135: 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 Do156: Should I Get Divorced?159: Mental-Load Sharing with Your Partner171: 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.