Parenting a Child with a Rare Disease: Support and Community in the Netherlands

Parenting a Child with a Rare Disease: Support and Community in the Netherlands

Parenthood rarely follows the script we imagine, but for families navigating a rare disease diagnosis, the shift can feel overwhelming. In this warm, honest, and direct episode for Rare Disease Day, Eva is joined by Sarah, who shares her family’s lived experience of parenting in the Netherlands through the lens of a rare condition. We move past the clinical details to discuss the "human" side: the initial grief, the search for a diagnosis, and the power of finding a community that truly understands.

Sarah introduces A Different Story, a vital space created for parents in the Netherlands to be seen, heard, and held. We discuss how labels can serve as tools for finding support rather than reasons for hiding, and why building a village of "rare" parents is essential for maintaining your own resilience. Whether you are at the start of a diagnostic journey or are looking for ways to advocate for your child’s dignity, this episode reminds you that you don't have to navigate the path alone.

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Episoder(215)

Is My Child's Dutch Getting Worse Over Summer? What Multilingual Families in the Netherlands Need to Know

Is My Child's Dutch Getting Worse Over Summer? What Multilingual Families in the Netherlands Need to Know

You're away for the six weeks of school holiday in your home country. Maybe you dropped your children off and came back to work. Or you're staring down the new school year starting soon with a child w...

29 Jul 27min

You're Allowed to Be Exhausted: A Reality Check Before the Summer Holidays

You're Allowed to Be Exhausted: A Reality Check Before the Summer Holidays

Feeling like an exhausted parent before the summer holidays have even started? You're allowed to be. This short, one-take episode — no editing, no polish, on purpose — is a reality check on parent bur...

22 Jul 6min

Why Does a Hand Lotion Calm Me Down? Nervous System Regulation with Elif Durgel

Why Does a Hand Lotion Calm Me Down? Nervous System Regulation with Elif Durgel

You catch a smell. A lotion, a tea, something cooking. And in under a second — before you've even thought about it — you're home.That's not nostalgia. That's not weakness. That is your nervous system ...

15 Jul 25min

What Is Trauma? Big T, Little T, and Why It Might Be You

What Is Trauma? Big T, Little T, and Why It Might Be You

Have you ever reacted to something and thought — why did I react like that? Or carried a weight you couldn't quite name?Today we're breaking down what trauma actually is — plainly, warmly, and without...

8 Jul 31min

Obligation Sex Is More Common Than You Think — Here's What It's Really Costing Your Relationship

Obligation Sex Is More Common Than You Think — Here's What It's Really Costing Your Relationship

This episode is brought to you by MamaSocial, who connect mums across the Netherlands so you actually have a community to lean on. Brunches, mingles, networking, whatever you need — MamaSocial will be...

1 Jul 23min

Queer Parenting in the Netherlands: Why One Dad Built a 250-Family Community From Scratch

Queer Parenting in the Netherlands: Why One Dad Built a 250-Family Community From Scratch

When Aldo's daughter arrived via surrogacy in Canada, he looked around and realised he'd spent 10 years focused on becoming a dad — and forgotten to build a community for her. So he started a WhatsApp...

27 Jun 28min

Raising Bilingual Children in the Netherlands: What Summer Travel Really Does for Heritage Language Development

Raising Bilingual Children in the Netherlands: What Summer Travel Really Does for Heritage Language Development

Your child speaks the school language all year without thinking. Your language — the one you grew up in, the one your parents use, the one you hoped would just stick — has to fight for space. And then...

24 Jun 24min

Coparenting After Separation in the Netherlands: One Dad's Honest Story

Coparenting After Separation in the Netherlands: One Dad's Honest Story

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20 Jun 29min

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