Being a parent of a child with a disability can be a lonely, isolating experience. I’ve heard from so many parents who long for connection with someone who understands what they are going through. I’ve also been told that Ruby’s story gives them hope and strength for the future of their own child(ren).

I thought long and hard about how I could possibly reach more parents who need support. I could write from my own perspective, sure, but you guys hear from me all of the time! I wanted to share the voices of some other parents who get it! So, I decided to bring my beautiful friend Jori onto Instagram Live for a candid parent to parent chat this morning.

Jori is wife to Chad and momma to 3 girls, Lulu, Audrey and Charlotte. Lulu is 8 years old and has hemimegalencephaly, a rare brain disorder that can cause epilepsy, development delays, muscle weakness and behavioral differences.

Jori and Lulu

I loved chatting with Jori. Her perspective and experiences spoke straight to my heart. Parenting a child with a disability is NOT easy, but it is also filled with joyful moments that make you appreciate life in such a deep way. I hope you enjoy our interview as much as I did.

We struggled with the Instagram Live technology quite a bit. It kept cutting us off, so I took the best clips and tried to make one cohesive piece. I really enjoyed this experience, so I’m looking into some other options for bringing parents together. Stay tuned! And let me know what you think!

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