E54: Raising a Child with an Invisible Disease
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E54: Raising a Child with an Invisible Disease
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About this listen
Some of the hardest things about motherhood are the ones no one can see.
In this episode, we talk about parenting children with invisible diseases—specifically Caley’s son, Whitten John 💪🏼, who lives with AVP deficiency (Diabetes Insipidus). He looks completely “normal,” acts like every other kid, and yet requires very real, very specific care to stay safe.
We unpack what it’s like to trust others with your child when their needs aren’t obvious, and how exhausting it can feel to constantly explain precautions that make you sound “dramatic” to people who don’t understand.
We also dive into scanxiety as Whitten prepares for another MRI—bringing up emotions tied to cancer, LCH recurrence fears, anesthesia, NPO days, and all the heavy feelings that come with them. There are tears. There’s honesty. And there’s deep empathy.
If you’re a mom navigating an invisible disease—or loving a child whose struggles aren’t visible—this episode is for you.
You’re not crazy. You’re not alone. And you’re doing better than you think. 💛
#invisibledisease #diabetesinsipidus #specialneedsmom