Seeing the Unseen: Navigating CVI and the Power of Being Heard - Part 2 of 2 Have you ever been told you're wrong about your child’s needs, only to trust your gut and be proven right? If you’re a parent of a child with cortical visual impairment (CVI), navigating medical appointments and creating a supportive environment can feel overwhelming. This episode dives into a real-life journey of overcoming dismissal from professionals and finding clarity and solutions for CVI. Learn how to advocate effectively for your child, even when faced with skepticism from experts. Discover practical strategi ..read more

Seeing the Unseen: Navigating CVI and the Power of Being Heard - Part 1 of 2 What happens when a medical professional dismisses your concerns about your child’s health? How do you move forward when you're made to feel like you're imagining things? If you're a parent of a child with a rare disease, you've probably faced moments of disbelief from others—especially from those you trusted to help. This episode dives into one such experience, sharing practical insights on how to navigate this emotional and isolating journey while advocating for your child. Learn how to recognize the signs of corti ..read more

The Power of Accepting Help: A Farewell to Shawdiya Have you ever struggled with the idea of asking for help--feeling like you need to power through alone? What if embracing help could transform your family’s well-being? This week’s episode explores a challenge many of us face: letting go of the belief that we must do everything ourselves. Whether you're a parent, caregiver, or just navigating life’s demands, accepting help can unlock balance and peace. Discover how this mindset shift has impacted our family, especially through the support of an incredible BHP, Shawdiya, who has been a corners ..read more

Unlocked: Tess’s Midnight Adventure and the Lessons It Taught Us Have you ever woken up in the middle of the night to a situation so surprising, it leaves you both laughing and shaking with relief? For families dealing with conditions like pica and hyperphagia, everyday routines can turn into unpredictable adventures. This episode dives into a real-life story of Tess's nighttime escapade and explores how these conditions impact not just her safety but also her family's peace of mind. - Discover what happened during Tess’s late-night piano performance and how her family managed the aftermath ..read more

Turning the Tables: How to Face Evaluations and Advocate for Your Child How do you handle evaluations when every question feels like a punch to the gut, and the evaluators hold all the power over your child's future? If you're a parent of a child with a rare disease, evaluations can feel like a never-ending series of heartbreaks and hurdles—whether it's for early intervention, an IEP, or critical funding like Medicaid. But what if you could reframe these evaluations as tools to help your child thrive? In this episode, you'll discover: How to answer tough evaluation questions without heartbrea ..read more

Burnout Busters: How Caregivers Can Find Energy and Connection Outside the Home Feeling burned out as a caregiver? What if the simple act of leaving your house could be the key to restoring your energy and creating meaningful connections? If you’re juggling endless tasks like medical appointments, therapy sessions, and daily care for your child with a rare disease, burnout might feel inevitable. But in this episode, you'll discover how small changes in your routine can help you overcome that soul-crushing fatigue while fostering a sense of community for you and your child. Here’s what you’ll g ..read more

Filling Your Bucket: Stress-Free Holidays for Rare Disease Families Are the holidays leaving you feeling drained instead of joyful? For parents of children with rare diseases, the holiday season often amplifies stress, disrupts routines, and makes it hard to enjoy quality time. This episode tackles these challenges head-on, offering actionable tips to help you turn the season into one that restores and uplifts you. Discover unconventional ways to approach holiday gift-giving that reduce stress and bring genuine joy. Learn quick and easy Amazon shopping hacks to save time and money during the ..read more

Student-athlete Tess. She's been on a team this winter through her school, and we've just come off a massive, colossal celebration of the whole shebang ..read more

Uncharted Territory: ADHD, Rare Disease, and the Struggles with Medication What happens when your child with a rare disease reacts unpredictably to a medication meant to help them focus and thrive? In this episode, we explore Tess’s journey with ADHD, rare disease, and her unexpected reaction to a new medication—highlighting the complex realities of balancing treatments and unknowns. Whether you’re a parent navigating similar challenges or a caregiver seeking insights, this episode is for you. Understand the complexities of combining anxiety and ADHD treatment with rare disease care. Learn wh ..read more

SED 514:  Cha Cha Moments: Navigating Anxiety, Impulsivity, and Focus Challenges in Rare Disease Parenting What would you do if your child faced anxiety so intense it disrupts their daily life, paired with impulsivity and struggles with focus? In this episode, we dive into Tess’s journey with anxiety, impulsivity, and executive function challenges—issues that may resonate with many parents navigating similar struggles. Learn about how we’re uncovering the roots of these behaviors and seeking effective strategies to help Tess thrive. Discover how anxiety and attention challenges can compo ..read more