230: Amanda’s Story | Medical-Parent Anxiety, Fear of the Future + 17 Years of Perspective

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.