Stronger Every Day

Stepping Forward: How Shoes and Therapy Transformed Tess’s Confidence What if a simple tweak in your child's footwear or a new approach to therapy could drastically improve their confidence and mobility? For parents of children with rare diseases, finding solutions to challenges like mobility and physical discomfort can feel overwhelming. In this episode, you'll learn how small adjustments can lea...

Creative Workarounds for Extraordinary Challenges: Life with Tess Have you ever had to outsmart someone who seems to have superhuman strength and an endless appetite? If you’ve ever faced the challenge of keeping your home safe for a loved one—or if you’re simply curious about creative problem-solving—this episode is for you. Discover how we navigate safety challenges for our 15-year-old daughter...

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. L...

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. Thi...

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 p...

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 explo...

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...

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. B...

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 restore...

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’r...

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 na...

Breaking Through Isolation: Finding Connection as a Rare Disease Parent Have you ever felt isolated, like no one around you understands the unique struggles you're facing? For parents of children with rare diseases, this feeling can be a daily reality. In this episode, you'll learn how to break through the walls of isolation that can accompany raising a child with a rare disorder. Whether it’s the...

Refuel to Be Stronger: Quick Self-Care Hacks for Busy Rare Disease Parents Ever feel like you’re running on empty, with no time to refuel? What if you could recharge without needing hours to yourself? As a parent of a child with a rare disease, you’re constantly on the go, but neglecting self-care can leave you feeling drained and unable to give your best. In this episode, we address this challeng...

Building Your Child's Dream Team: Navigating Therapies for Rare Diseases Are you feeling overwhelmed by the countless therapies and appointments involved in caring for your child with a rare disease? In this episode, we’ll discuss practical solutions to the complex challenges parents of children with rare disorders face, from managing occupational, physical, and speech therapies to building a team...

Stronger Together: Aligning with Your Partner on the Rare Disease Journey Are you and your partner truly aligned when it comes to supporting your child with a rare disease, or are you struggling to get on the same page? This episode dives into a common but unspoken challenge many parents face: navigating a complex healthcare journey with your partner while maintaining your relationship. If you're...

Have you ever struggled to find the right tech tools to help your neurodiverse child? Managing the complex needs of a child with a rare disorder can feel overwhelming, especially when it comes to communication. This episode dives into the use of technology to simplify your life, helping your child express themselves and soothe during sensory overload. -Learn about different communication devices a...

Traveling with Autism: 14 Essential Hacks for a Smoother Journey - Part 2 of 2 Ever found yourself dreading travel because of the unique challenges autism brings along? What if I told you 14 hacks could make your next trip a breeze? Whether you're a parent of a child with autism or navigating the world with autism yourself, traveling can feel overwhelming. This episode is filled with practical str...

Traveling with Autism: 14 Essential Hacks for a Smoother Journey - Part 1 of 2 Ever found yourself dreading travel because of the unique challenges autism brings along? What if I told you 14 hacks could make your next trip a breeze? Whether you're a parent of a child with autism or navigating the world with autism yourself, traveling can feel overwhelming. This episode is filled with practical str...

Unlocking Tess’s Potential: How a Simple Diet Change Transformed Her Health - Part 2 of 2 Have you ever wondered how the right diet could drastically improve your child's health, especially if they're dealing with complex medical conditions? For parents of children with rare diseases, balancing nutrition while managing symptoms like GERD and eczema can be overwhelming. In this episode, I dive into...

Unlocking Tess’s Potential: How a Simple Diet Change Transformed Her Health - Part 1 of 2 Have you ever wondered if a simple change in diet could dramatically improve your child’s cognitive function and overall health? As a parent of a child with a rare genetic disorder, you’ve likely faced numerous challenges in managing their symptoms. This episode shares a real-life story of how a specific diet...

From Stares to Support: Navigating Public Reactions and Guiding Loved Ones in Caring for Your Child What do you do when people stare at your child with a rare disease? How can you turn that awkward moment into an opportunity for connection? If you've ever felt uncomfortable or angry when strangers or even loved ones don’t know how to interact with your child, this episode will help you shift your...

Eight Tools to Get Organized and Run Your Household Better Are you looking to get organized and level up your productivity? With the arrival of autumn, many of us feel the urge to hit the reset button and get our homes and lives back in order. But managing the influx of documents, communications, and daily tasks can be overwhelming, especially for parents balancing the unique challenges of caring...

Are you struggling to balance the needs of your neurotypical child while raising a sibling with a rare disease? This episode dives into how you can shift your mindset to see the hidden benefits your neurotypical child gains from growing up alongside a sibling with a rare condition, helping you address the common concerns of feeling overwhelmed or guilty. 1. Learn how to reframe challenges into gro...

Quick update about Miss Tess and her adventures at summer camp.

How could you change your mindset about taking your child with a rare disease to the doctor? Doctor visits can be overwhelming, especially when managing complex medical needs and balancing your family's well-being. This episode is about your mindset--learning to trust yourself and others. 1. Enlist two types of co-pilots for visits to make sure you don't miss anything. 2. Trust yourself, since you...