{"version":1,"type":"rich","provider_name":"Libsyn","provider_url":"https:\/\/www.libsyn.com","height":90,"width":600,"title":"MERRF Syndrome and Motherhood: Raising and Remembering Dahlia - Jessica\u2019s Story (248)","description":""We followed Dahlia\u2019s lead\u2014and Dahlia was not going to let this stop her.\u201d \u2014 Jessica Fein What happens when your child\u2019s diagnosis is so rare that no one\u2014including your doctors\u2014knows how to help? For Jessica Fein, navigating life with her daughter Dahlia\u2019s MERRF Syndrome meant redefining motherhood, finding joy in unexpected places, and transforming grief into connection and advocacy. In this honest and deeply moving episode, we explore: \u2705 What it\u2019s like to go on a diagnostic odyssey, and finally get answers that bring more questions \u2705 The complexity of parenting a child with medical needs, including the realities of home care and hospital stays \u2705 How grief exists even while your child is alive\u2014and what ambiguous grief means for medical parents \u2705 The power of storytelling, finding meaning through writing, and connecting with community through shared experience Whether you\u2019re a parent, provider, or someone looking to better understand the emotional layers of complex care and rare disease, this episode will resonate with you. Timestamps & Key Topics \u23f1\ufe0f [00:00] \u2013 Episode Intro Meet Jessica Fein and hear the quote that shaped this conversation \u23f1\ufe0f [01:00] \u2013 Jessica\u2019s Story Begins Navigating the early years of parenting without answers \u23f1\ufe0f [03:00] \u2013 Diagnosis & the Unknown The journey to a MERRF Syndrome diagnosis and what came next \u23f1\ufe0f [09:00] \u2013 Life With a Rare Disease Hospital stays, trachs, and becoming the expert in your child\u2019s care \u23f1\ufe0f [13:00] \u2013 Following Dahlia\u2019s Lead Letting joy and silliness guide the way \u23f1\ufe0f [17:00] \u2013 Who Dahlia Was A peek into Dahlia\u2019s personality and how she impacted everyone she met \u23f1\ufe0f [20:00] \u2013 Writing As Healing How Jessica turned to writing as an act of reflection, advocacy, and self-care \u23f1\ufe0f [24:00] \u2013 What Helps in the Hospital Tangible ways friends and providers can support caregivers \u23f1\ufe0f [30:00] \u2013 Grief, Then and Now Understanding ambiguous grief\u2014and the evolution of loss after death \u23f1\ufe0f [33:00] \u2013 How to Connect With Jessica Where to find her book, podcast, and writing Resources & Links from today's episode: \ud83d\udcd5 Read Breathtaking by Jessica Fein: [Available on Amazon and wherever books are sold] \ud83c\udf10 Visit Jessica\u2019s website: www.jessicafeinstories.com \ud83c\udfa7 Listen to her podcast: I Don\u2019t Know How You Do It \ud83d\udcf7 Follow Jessica Fein on Instagram, Facebook and LinkedIn Share Your Thoughts Did this episode resonate with you? Do you have a story of parenting through rare disease or complex medical care? We\u2019d love to hear from you\u2014tag us or leave a comment! If you found this episode meaningful, please subscribe and leave a review\u2014it helps more families discover these conversations. \u2764\ufe0f SupportSpot is Here for You SupportSpot gives you instant access to expert child life tips, emotional support, and medical journey resources. Try it FREE for 7 days! Subscribers can book a complimentary visit with a Child Life Specialist through Child Life On Call. Start now at childlifeoncall.com\/supportspot \ud83c\udf99\ufe0f Meet the Host Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform connecting families and care teams with expert child life services. A certified child life specialist for over 13 years, Katie has worked across pediatric healthcare settings, presented nationally, and is the author of a children\u2019s book. She hosts the Child Life On Call Podcast to amplify parent voices and emphasize the value of child life services. \ud83d\udcf1 Instagram.com\/childlifeoncall \ud83d\udcd8 Facebook.com\/childlifeoncall \ud83d\udd17 linkedin.com\/in\/kfdonovan The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided. Keywords: MERRF Syndrome, Rare Disease, Medical Parenting, Grief, Child Life ","author_name":"Inside the Children's Hospital","author_url":"http:\/\/insidethechildrenshospital.com","html":"