All Episodes
The Rare Life — 315 episodes · page 2 of 4
165: What We Want Our Child’s Therapists to Know, But Don’t Tell Them w/ Alex Farha
164: Jillian’s Story | Medical Mom x 2 and the Saying “Someone Always Has It Worse”
Season 10 Kickoff | Episode Sneak Peaks, Newsletters + ISO a Final Board Member w/ Alyssa Nutile
Summer Mini #12: Adjusting to Disability Parenting as a Single Mom | Maddison’s Catch-Up
Summer Mini #11: Family Planning Decisions + Changing Sibling Relationships | Madeline’s Catch-Up
Summer Mini #10: Finding a New Home + Starting Over | Tiffany’s Catch-Up
Summer Mini #9: Our Complicated Relationship with Medically Complex Facebook Groups
Summer Mini #8: Rebuilding After Life-Changing Loss | Kari’s Catch-Up
Summer Mini #7: Everything You’ve Ever Wanted to Know About Madeline
Summer Mini #6: The Oddly Specific Things We Grieve as Parents of Medically Complex Kids
Summer Mini #5: Childhood Cancer + Changing Perspectives | Vanessa’s Catch-Up
Summer Mini #4: Birthdays for Our Medically Complex Kids and the Many Emotions They Can Bring Up
Summer Mini #3: A Close Call, Feelings of Regret + Embracing Second Chances | Suzi’s Catch-Up
Summer Mini #2: 10 Must-Haves for Traveling with Your Medically Complex Child This Summer
Summer Mini #1: What We Wish We Could Go Back and Tell Ourselves
162: Season 9 Finale | A Season of Growth, Listener Thoughts + Summer Mini-Episodes w/ Alyssa Nutile
161: Having a Nondisabled Child After Your Disabled Child + Conflicting Feelings That Brings w/ Brianna Alcox
160: Ashley Smith’s Story | Sibling Dynamics, Nontraditional Gender Roles, + Not Knowing What to Grieve
159: Sharing the Mental Load with Your Partner in Disability Parenting w/ Amanda Griffith-Atkins + Will Atkins
158: Serena’s Story | Disability Advocate Turned Disability Parent, a Degenerative Diagnosis, + the Power of Now
157: Friendships with People Who Don’t Have Disabled Kids w/ Jillian Arnold
156: Should I Get a Divorce? Insight + Solidarity from Divorced Medically Complex Parents w/ Amanda Griffith-Atkins
155: Aneesa’s Story | A Terminal Diagnosis + Dark Clouds and Silver Linings
154: Deaths in the Community | How it Affects Us + Our Relationship with the Parents w/ Rose Watson
153: Hurtful Things Loved Ones Say and Do | How it Affects Us + What to Do About It w/ Amanda Griffith-Atkins
152: Stephanie’s Story | A Stroke in Utero, Recurring Medical Trauma + No Space To Process It
151: Fostering Friendships with Other Disability Parents w/ Kate Livingstone and Kari Harbath
150: Siblings | Listening + Learning from Glass Children w/ Megan Schneider
Mini Episode: A Sprint to the Finish for Our Family and Friends Fundraiser!
149: Annie’s Story | Physician Mom, Infertility, + Comparison Between Twins
Mini Episode: An Exciting Update for Our Family and Friends Fundraiser!
148: The Family + Friends Perspective | What it’s Like to Watch us Navigate Life with Our Medically-Complex Children w/ Kassie Harbath
147: Sex + Disability Parenting | All the Ways It Takes a Hit + Ways to Reclaim It w/ Amanda Griffith-Atkins
146: The Dad Perspective w/ Derek Dizney, Zach Schneider, + Juston Cheney
145: Ashley’s Story | Childhood Dementia, An Ended Marriage, + Learning to Live in The Present
144: Season 9 Kickoff | This Season’s Theme, Our Friends + Family fundraiser, & a Sneak Peek of Upcoming Episodes w/ Alyssa Nutile
When Your Child is Inpatient at Hospital During Holidays or Special Events w/ Amanda Griffith-Atkins [REPLAY]
Isolating at Home During Holiday Events to Avoid Illness w/ Amanda Griffith-Atkins [REPLAY]
The Holidays + Why They Can Be Tough for Disability Parents w/ Amanda Griffith-Atkins [REPLAY]
143: Season 8 Finale | International Listeners, Frantic Behind-the-Scenes Work, and Surprising Popular Episodes w/ Alyssa Nutile
142: What If My Disabled Child Outlives Me? w/ Amanda Griffith-Atkins
141: How Our Faith + Spirituality Can Be Impacted by Our Experiences with Our Medically Complex Children (+ Visa Versa) w/ Ali, Bethany, Melissa, and Rachel
140: Alyssa’s Story | A Mistaken Brain Surgery, Rebuilding Trust in The Medical System, + A Life-Limiting Prognosis
139: In-Home Nursing | The Good, the Bad, + the Ugly w/ Caitlin Castro, Nicole Dennis + Brooke Teremi
138: Therapy 101 | Barriers Disability Parents Face + How to Receive This Much-Needed Care w/ Liz Spitzer, PhD
137: Life After Child Loss | What is Grief, How Does It Show Up, and What Can We Do About It? w/ Cole Imperi + Leah Deason
136: Bethany’s Story | Trach Life, Calloused to Trauma, + Making Space for Anger
135: Careers + Family Roles | The Ways They’ve Been Impacted by Disability Parenting + The Resentment We Feel w/ Amanda Griffith-Atkins, LCSW
134: Child Loss 101 | What to Expect, Decisions You Can (and should) Make Now + How to Make The End Of Your Child’s Life As Beautiful As They Are
133: Bek’s Story | Solo Medical Parenting, 13 Years of Living in Survival Mode + Grieving the Children She Dreamed of Having
132: When “Self-Care” Gives Us the Swears | the Inaccessibility of Self-Care + How to Redefine It w/ Amanda Griffith-Atkins, LMFT
131: Chronic Stress + Our Bodies | Ways Our Physical Health Takes the Hit w/ Amanda Griffith-Atkins, LMFT
130: Fearful of Child Loss | Anticipatory Grief + the Ways it Guts Us w/ Amanda Griffith-Atkins, LMFT
129: Maddison’s Story | A Delayed Diagnosis + Painful Comparisons
128: Season 8 Kickoff | a New Theme, Sneak Peeks of Brand-new Episodes + a 9-Month Secret Revealed w/ Brittany Steitz
Health Anxiety w/ Amanda Griffith-Atkins, LMFT (Rebroadcast)
To Those Who Cannot Say, “I Wouldn’t Have Them Any Other Way.” (Rebroadcast)
The Sibling Perspective w/ Katherine Acton (Rebroadcast)
Should A Child’s Disability be Part of Their Parent’s Identity? w/ Author Emily Ladau and Amanda Griffith-Atkins, LMFT (Rebroadcast)
The Parable of the Pain Scale | The Ways Bearing Witness to Our Children’s Suffering Calibrates Our Pain Scales to an Entirely Different Level w/ Libby Holley (Rebroadcast)
The Story of Claire (Rebroadcast)
Family Planning When You Have a Medically-Complex Child w/ Amanda Griffith-Atkins LMFT + 13 Special Guests (Rebroadcast)
It’s All My Fault (Rebroadcast)
Living with Sleep Deprivation w/ Jill Arneson (Rebroadcast)
Confessions of a NICU Nurse w/ Sam Keirsey, RN BSN (Rebroadcast)
127: Season 7 Finale + 3 Year Anniversary | How This Podcast Has Changed My Life w/ Juston Cheney
126: Therapies | When to Scale Back and How to Do So w/ Andrea Loveday-Brown and Larkin O’Leary
125: Tips and Tricks for Traveling with Disabled Kids w/ Alyssa Nutile
124: Suzy’s Story | Brain Injury, the Exhaustion of Living in Survival Mode, + Wondering If This Is the End
123: “Special Needs” + Why Parents Need to Drop the Term w/ Kari Harbath and Disability Activist Hannah Setzer (VOICEOVER)
123: “Special Needs” + Why Parents Need to Drop the Term w/ Kari Harbath and Disability Activist Hannah Setzer
122: 5 (Surprising) Things Parents Want Special Ed. Professionals to Know w/ Tiffany Goodchild
121: When Strangers “Just Ask” + How to Handle That w/ Disabled Author James Catchpole
120: Alexis’ Story | Epilepsy, Holland, + Suicidal Ideation
119: Your Child’s Medical Team | How to Push Back, Ask Questions, and Build Your Dream Team w/ Dr. Kelly Fradin, MD
118: Medical Organization Hacks | Supplies + Info + Appointment Scheduling
117: Trauma-versaries + Other Triggers to Our Medical Trauma w/ Hailey Adkisson and Madhura Katre
116: Kinda Obsessed | Celebrating Our Relationships with Our Children With Rare Conditions w/ 24 Parent-Contributors
115: Melanie Dimmitt’s Story | a Diagnosis Delivered in Bite Sizes + How It Started Vs. How It’s Going
114: Grieving Our Children’s Intellectual Disabilities + Facing Our Internalized Ableism w/ Marci Dunning
113: Blenderized Diets for Tubies | The Life-changing Health Benefits and How to Get Started w/ Cassie Krings and Hilarie Dreyer, RD
112: Abby’s Story | Skeletal Dysplasia, a Prenatal Diagnosis with Grim Hopes of Survival, + Ditching the Bubble Wrap
111: Season 7 Kickoff
110: When Your Child is Inpatient at the Hospital During Holidays w/ Amanda Griffith-Atkins
109: Isolating at Home During Holiday Events to Avoid Illness w/ Amanda Griffith-Atkins
108: The Holidays + The Ways They Can be Tough for Disability Parents w/ Amanda Griffith-Atkins
107: Season 6 Finale episode w/ Brittany
106: Respecting and Honoring Our Nonspeaking Children w/ Brianna Christian
105: Brianna’s Story | Regression, Finding Purpose, and a Nurse-Turned-Medical-Mom
104: Tangible Ways to Support Parents of Disabled Children | A Message for Our Loved Ones
103: Instilling Body Image Resilience in Children with Disabilities w/ Dr. Lexie Kite
102: Becoming a Single Medical Mom w/ Tiffany Pasillas
101: Tiffany’s Story | T18/Edward Syndrome + Advocating for Her Daughter’s Right to Live
100: Raising Awareness | Disabled People (and Their Parents) Do Not Owe Society Anything
99: Family Planning When You Have a Medically-Complex Child w/ Amanda Griffith-Atkins LMFT + 13 Special Guests
98: Siblings | Ways We Can Protect Our Glass Children w/ Melissa Schlemmer
97: Melissa Schlemmer’s Story | A Rare Disorder Affecting the Brain + Radical Acceptance
96: “All We Want Is a Healthy Baby” | How This Feels to Parents of Unhealthy Babies
95: The Parable of the Pain Scale | How Bearing Witness to Our Children’s Suffering Calibrates Our Pain Scales to an Entirely Different Level w/ Libby Holley
94: Family + Friends | How to Stay Close When You Feel Worlds Apart w/ Chelsea Denham