After Ashley Smith’s son Deacon was admitted to the NICU, and one thing after another cascaded out of control with his care, she found herself literally screaming in the nursery “THIS IS NOT MY PLAN!” While not all of us have screamed this out loud, so many of us have had a similar breaking point, where the weight of fear and grief and lost expectations bear down on us. In this episode, Ashley shares what it was like to navigate this complex grieving process in her own family after her son was diagnosed with a rare syndrome. She shares what her family grieves the most (and it’s a little surprising), how her disabled and non-disabled child interact and grow together, and what it’s been like for their family as she continued her career and her husband stayed home as a full-time caregiver for their children. This episode has ALL the feels. Let’s dive in! Links: Fill out our contact form to get a reminder about upcoming discussion meetings and the Skype link to join! Follow Ashley on Instagram @ashleypaigesmith! Follow us on Instagram @the_rare_life! Donate to the podcast or Contact me about sponsoring an episode. Follow the Facebook page. Join the Facebook group Parents of Children with Rare Conditions. Access the transcript on the website here. And if you love this podcast, please leave us a rating or review in your favorite podcast app!