Are you grappling with the added logistics of raising a medically complex child? Yeah. Us too.
How do you keep track of countless appointments, medications, treatments, therapies, and durable medical equipment (DME) orders? What resources are out there to help parents and caregivers stay organized and not lose their sanity? Meet our returning guest, Lily Brown from Parent to Parent USA, who shares what she fondly calls “brutally practical tools” and resources to simplify and support the caregiver’s life.
In this conversation, Lily shares tips, tools and organizations which have helped her in her personal parenting journey, and which might help you, too. Some of the tools mentioned include:
- Stages of adaptation
- Parent to Parent USA
- Parent Training and Information Centers,
- Project Sunshine,
- Hear Your Song
- Personal Kanban
- She is Charlotte
This list is by no means exhaustive, but barely scratches the surface of the many tools available for those raising children with complex medical needs.
Wrapping up the episode, Emily and Lily discuss the book She is Charlotte, and how Emily transformed her real-time journal entries into this detailed book about her personal medical parenting journey. There’s immense value in connecting with and learning from other parents who have shared experiences. This conversation is woven with practical advice, shared experiences, and endless compassion and understanding—a conversation that promises to leave you better equipped for the journey ahead. So, join us, listen in, and remember that you are not alone.
