Stronger Every Day

Mar 04 2025 100 ep. 10 mins 66

Stronger Every Day Podcast artwork

I quit my law job to be at home with my kids. Turns out our daughter Tess has a rare genetic disorder called Hao-Fountain Syndrome, or USP7. She's different. And now, so is everything else. #USP7 #HaoFountainSyndrome #autism

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SED 529: Talking Without Words

Mar 04 2025 10 mins

Today I'm talking about the ability to read minds. And how it might affect our relationship with Tess.

SED 528: Pizza Vacuum

Feb 25 2025 9 mins

Today we're talking about an irksome behavior of Tess's, something that's happening more and more frequently, and what it could mean.

SED 527: Why I'm Changing the Show Back

Feb 18 2025 10 mins

Last summer, I made a big change to this show. Now, I’m changing it back. In this episode, I share why.

Stronger Every Season: A Caregiver’s Mindset Shift

Feb 11 2025 5 mins

If you're a caregiver, you know the toll it can take on your body—aching muscles, exhaustion, and the creeping fear that one day you just won’t be able to do it anymore. But what if there’s a different way to look at it? A mindset shift that keeps you strong, capable, and even optimistic?

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

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.

Stepping Forward: How Shoes and Therapy Transformed Tess’s Confidence

Jan 28 2025 9 mins

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.

Creative Workarounds for Extraordinary Challenges: Life with Tess

Jan 21 2025 12 mins

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.

Seeing the Unseen: Navigating CVI and the Power of Being Heard - Part 2 of 2

Jan 14 2025 12 mins

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.

Seeing the Unseen: Navigating CVI and the Power of Being Heard - Part 1 of 2

Jan 07 2025 11 mins

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.

The Power of Accepting Help: A Farewell to Shawdiya

Dec 31 2024 7 mins

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 cornerst