116: Kinda Obsessed | Celebrating Our Relationships with Our Children With Rare Conditions w/ 24 Parent-Contributors

The Rare Life

Today, we have one of my favorite episodes ever to share with you! It’s Rare Disease Day, and while we’ve done episodes for this awareness day in the past, I wanted offer something a little different this time around.

So instead of a discussion of rare diseases or diagnoses or even awareness, we’re celebrating the beautiful and unique relationships we get to have with our rare kiddos. I asked parents from our community to record their answers to four questions about their relationship with their kids, from your favorite thing about your child to your favorite moments with your kids to the moments that have made you the most proud, and we received 24 responses. Listening back through them to compile this episode, I teared up more than once because all these responses were bursting with love and connection.

Some of the reflections shared were so personal and tender. At the end of the day, it’s so clear to me that we are all our kids’ fiercest advocates and number one fans, but it’s not every day that we actually get a space to talk about just how amazing our kids are. If you’re the parent of a child with a rare disease (or any medical complexity!), you’re going to love this episode.

And if you’d like to join in the celebration, we’ll be asking these questions again on Instagram this week (link to my page is below) and you’ll be able to share your own answers with all of us.

Thanks again to each and every parent who shared audio with us for this episode. I’m so honored that you feel safe and supported in this space and that you’ve let us into these tender moments. Together, we’ve created something so special and I’m so excited to share this episode with you.

Links:

Check out our incredible sponsor Trexo Robotics and learn more about their robot legs!

Follow me on Instagram!

Donate to the podcast via Buy Me a Coffee.

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Follow the Facebook page.

Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript and download the research articles Hilarie cited on the website here.

And if you love this podcast, please leave us a rating or review in your favorite podcast app!

A big, big thank you to everyone who contributed thoughts and suggestions to this episode:

Madeleine @madeleineoudin

Alison @growinupgrounded

Sarah @s_fowler19

Katie @katiemelan_

Brittany @britbratsteitz

Daniel @disorderrarediseasefilms

Kathryn @bornbyariver

Karley @karley_l_h

Loren @lorenecm

Carolina @carolq14

Rachel @alvesmomkickingcask

Julianna @howlinghive

And more! Checkout the website for all the details.