Stronger Every Day: For Parents of Children with Rare Diseases

Max Flex: The Rare-Disease Parent's Superpower for Navigating Uncertainty

How do you keep going when rare-disease parenting constantly upends your plans?

If you're raising a child with a rare disease, you know that unpredictability is the norm—canceled plans, last-minute doctor visits, and constant pivots can feel exhausting. In this episode, we explore why these disruptions hit so hard and how a simple mindset shift can help you regain a sense of control.

• Understand why rare-disease parenting makes traditional planning so difficult—and what to do about it.
• Learn a new way to approach daily schedules that reduces frustration and stress.
• Discover how embracing "Max Flex" can help you feel more confident and prepared, no matter what comes your way.

Listen now to learn how rare-disease parents can build a mindset that turns constant disruptions into opportunities for strength and adaptability.

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 lead to significant progress, helping your child feel more secure and thrive in their daily life.

• Discover a groundbreaking physical therapy technique that could change how your child moves and feels.
• Learn how specific shoes can impact your child's stability, confidence, and overall comfort.
• Gain actionable insights into ways you can support your child's mobility and independence at home.

Hit play now to uncover simple, practical changes that can transform your child's mobility and confidence starting today!

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 Tess, who has unique needs that go far beyond the toddler-proofing most families rely on.

• Learn about ingenious solutions we've devised to manage Tess's bedroom, bathroom, and kitchen safety.
• Understand the complexities of hyperphagia and why typical safety measures often fall short.
• Be inspired by real-life examples of persistence, adaptation, and the realities of parenting someone with extraordinary needs.

Hit play now to hear practical tips, unexpected stories, and a call for your ideas—because we're all in this together.

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 strategies to create a CVI-friendly environment that fosters improvement.
• Get a list of book recommendations tailored to children with CVI to make reading more engaging.

Press play now to gain insights and actionable tips that can transform how you support your child with CVI!

Mentioned:

Milwaukee artist and author Lois Ehlert, creator and writer of Fish Eyes and Circus

Luminous, by Julia Kuo

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 cortical visual impairment (CVI) and why early identification matters.
• Discover strategies to manage the emotional toll of feeling dismissed or gaslit as a rare disease parent.
• Gain actionable tips for building resilience and finding allies who truly listen and care.

Hit play now to hear this week's episode and equip yourself with tools to advocate for your child, even when the system feels stacked against you!

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 cornerstone of our lives for over four years.

-Learn why accepting help isn't a weakness but a strength that benefits your entire family. -Hear a heartfelt story about Shawdiya and the deep connection she built with our daughter Tess over the years. -Get practical insights into showing gratitude and fostering lasting relationships with those who support you and your family.

Hit play now and discover how letting others step in can lead to a happier, healthier life for you and your loved ones!

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. - Learn about pica and hyperphagia, two conditions that require constant vigilance, and how they connect to Tess's rare disorder. - Gain insights into how families implement creative safety measures and what happens when those defenses fail.

Hit play now to hear this unforgettable story, understand the stakes of living with pica and hyperphagia, and come away with a new perspective on resilience and love.

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 heartbreak.
• How to shift your mindset and see evaluations as opportunities, not obstacles.
• How to advocate effectively, ensuring your child gets the resources and support they need.

Don't let evaluations control your journey--hit play now to learn how to turn the tables and use these tools to set your child up for success.

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 gain from listening:

• Insight into why caregivers experience burnout and how to recognize the warning signs.
• A simple yet powerful strategy to prevent burnout and feel more connected to the world around you.
• Heartwarming examples of how building relationships in your local community can benefit both you and your child.

Hit play now to learn how a quick outing can transform your day, energize your spirit, and help you and your child feel more connected.

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 busy season.
• Master the mindset shifts and planning strategies that can help you reclaim peace and balance, even when routines are upended.

Listen to this episode now and equip yourself with simple, game-changing tools to make this holiday season the most fulfilling one yet.

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On Every: Michael Ashcroft's article How to Make Unfixated Choices