ONCE UPON A GENE - EPISODE 112

Being Mindful of the Sibling Experience with Founder of We Are Brave Together - Jessica Patay

Jessica Patay has three kids- one born with prader-willi syndrome. She joins me today to discuss the relationship and complexity of sibling's experiences and how she navigates the extra layer of parenting. She founded a nonprofit called We Are Brave Together, which hosts the Brave Together podcast. We Are Brave Together provides respite, community and mentoring for mothers raising children with disabilities and medical complexities.

EPISODE HIGHLIGHTS

Can you tell us about yourself and your family?

I've been married to my husband Chris for over 24 years and we have three kids. Luke is 21, Kate is 16, and Ryan is 18 and has prader-willi syndrome, a rare genetic disorder. 

What was it like having a child with a rare genetic disorder before there was connection through social media?

I tried to keep up with email and chat groups, but I got overwhelmed with and would only pop in chats periodically to see what people were posting. I didn't know the beautiful connections I was missing like what you can form today. My husband and I joined prader-willi support groups, found our people very early in the journey, and we were able to create a tribe without the presence of social media. 

What were your fears or hopes when having a third child?

Ryan was an easy baby and it left us wanting another child. We thought about Luke a lot and wondered if he'd grow up feeling like an only child. We wanted him to have another sibling and we wanted another child ourselves. 

Have Luke and Kate had to grow up faster than most kids?

They've experienced crisis after crisis. They're amazing human beings who are resilient, wise, patient, loving and compassionate. It's really hard for siblings. We have tried, but there's no way of fully compensating for what they go through.

Do you discipline all of your kids equally?

Each kid is different, but Kate and Luke have been disciplined differently than Ryan because consequences don't work. I discipline on principle to demonstrate to Luke and Kate that Ryan does still have consequences despite them not changing his behavior.

Can you tell us about We Are Brave Together?

We are a 501c3 organization I launched in 2017 with the intent to combat the isolation and compassion fatigue that moms of children with disabilities or challenges face. Our focus is moms and we offer support groups, educational workshops, retreats and respite scholarships. We also launched a podcast, Brave Together.

LINKS & RESOURCES MENTIONED

We Are Brave Together Website

https://www.wearebravetogether.com/

Brave Together Podcast

https://www.wearebravetogether.com/podcast.html

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