Today we're gonna talk more about the podcast The Telepathy Tapes and how it applies to our Tess.
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SED 531: This Will Be Our Year
Today I'll be giving you an update on some of the thrilling developments of our foundation in our quest for a cure for Tess and the other patients.
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SED 530: Dunk You Very Much
Today I'll be telling you more about Tess playing basketball, and a new development for her on the court.
Read MoreSED 529: Talking Without Words
Today I'm talking about the ability to read minds. And how it might affect our relationship with Tess.
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SED 528: Pizza Vacuum
Today we're talking about an irksome behavior of Tess's, something that's happening more and more frequently, and what it could mean.
Read MoreSED 527: Why I'm Changing the Show Back
Last summer, I made a big change to this show. Now, I’m changing it back. In this episode, I share why—and how a recent ski day with Tess, in zero-degree weather, reminded me of something important. Tune in to hear the full story.
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Stronger Every Season: A Caregiver’s Mindset Shift
What if the way you think about aging is making caregiving even harder?
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Max Flex: The Rare-Disease Parent’s Superpower for Navigating Uncertainty
How do you keep going when rare-disease parenting constantly upends your plans?
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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?
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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?
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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?
Read MoreSeeing 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?
Read MoreThe 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?
Read MoreUnlocked: 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?
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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?
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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?
Read MoreFilling Your Bucket: Stress-Free Holidays for Rare Disease Families
Are the holidays leaving you feeling drained instead of joyful?
Read MoreUncharted 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?
Read MoreCha 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?
Read MoreBreaking 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.
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