A Leap of Faith - Rare Disease Moms on the Bittersweet Joy of New Babies

Once Upon A Gene

ONCE UPON A GENE - EPISODE 209

A Leap of Faith - Rare Disease Moms on the Bittersweet Joy of New Babies

I'm joined by two new, rare moms, Emily and Katie, to discuss the topic of having additional children after you've had a child with a rare disease.

EPISODE HIGHLIGHTS

How did your experience with your first born children's genetic conditions shake your hopes and fears about having a second child?

Once you connect with the rare disease world and learn about all of the rare disease possibilities, you know rare isn't so rare. The second pregnancy is different because you're aware of the chance that something can happen more than once and your eyes are open to the potential outcomes.

Does having the knowledge the second time take away from the joy?

It definitely does. We had genetic testing done on our second child and it was terrifying until we got results. Throughout the entire pregnancy, I didn't feel safe.

Did you wish you had a typical experience and did you feel bad for feeling that way?

You expect challenges to happen again, and it's a self-preservation mentality, not wanting to set yourself up to be disappointed. I do feel guilty about wanting a typical parenting experience, but that's what everyone wants. That's not to say that you don't love and appreciate your parenting experience with your child who has disabilities. We don't want to see our children suffer and we don't want to suffer as parents.

What is your best advice for families thinking about having another child?

It's important for parents to acknowledge all of their feelings and the complexities of their feelings. It's complicated, so reach out to other people you know who have been through it. Talking to others will help to solidify your decision to continue growing your family, despite how terrifying it might feel.

CONNECT WITH KATIE

A Very Rare Adventure

https://averyrareadventure.com/

Instagram

https://www.instagram.com/averyrareadventure

CONNECT WITH EMILY

Instagram

https://www.instagram.com/emily_amerson_/

LINKS AND RESOURCES MENTIONED

ONCE UPON A GENE - EPISODE 151 - Rare Friends Forever - Hanging Out and Showing Some Love to Brene Brown with Katie Lloyd and Adam Johnson

https://effieparks.com/podcast/episode-151-rare-friends-forever

ONCE UPON A GENE - Episode 125 - A Very Rare and Very Real Adventure with DeSanto-Shinawi Syndrome Mom and Author of a Very Rare Adventure Katie Lloyd

https://effieparks.com/podcast/episode-125-katie-lloyd

ONCE UPON A GENE - EPISODE 205 - Mastering the Art of the Supermarket Answer When Someone Asks, How Are You with Jennifer Siedman

https://effieparks.com/podcast/episode-205-mastering-the-art-of-the-supermarket-answer

CONNECT WITH EFFIE PARKS

Website

https://effieparks.com/

Twitter

https://twitter.com/OnceUponAGene

Instagram

https://www.instagram.com/onceuponagene.podcast/?hl=en

Built Ford Tough Facebook Group

https://www.facebook.com/groups/1877643259173346/