Blessed With Chaos

A mother sharing daily experiences, stories, information, and lessons learned through caring for a child diagnosed with a rare genetic condition, Rett Syndrome.

Our Story Lives Here

We are blessed to share our story with others as a light of hope for families and individuals struggling with any kind of hardships. Click below to read our story, then head over to our blog to follow our journey through life with Rett Syndrome and helping others!

This is how it all started…

My name is Bethanie Faulk, and I reside in Indiana with my husband Cody, daughter Stetsyn, and loyal Labrador, Drake. I am a social worker by trade, though I left my job in October 2024 to stay home and care for Stetsyn. I enjoy crafting and being creative, especially through making polymer clay jewelry and crafts, which I began in 2020 as the pandemic was ramping up and started my business The Butterfly Panda in 2020.

I have always enjoyed writing, from poetry and short stories in elementary school to beginning writing a book in junior high and high school. Unfortunately, I do not have the attention span to write a book, so that still sits incomplete. I was fair queen and during the week of the fair a local paper asked me to write a blog each day, and I loved it! According to family members and friends, my entries were pretty good and enjoyable to read. Fast forward to present, and it seems like I can never post on Facebook without over-sharing or writing too much, so I typically do not share much about my life on social media because I don’t want to be “one of those people” who shares too much in novel-length posts all the time.

On a few occasions, I have posted lengthy updates about happenings in my life. Most importantly, when Cody received a kidney transplant. Cody was born with a genetic mutation causing Polycystic Kidney Disease, similar to the commonly heard of Polycystic Ovarian Syndrome, affecting both of his kidneys and causing fluid-filled cysts to form and basically take over his kidneys. We waited and one day got the call that a deceased donor kidney, which was a perfect match for Cody, was available and waiting for him. What a wild, whirlwind of a journey, yet one of the biggest blessings of our lives.

Now, we have a daughter named Stetsyn, and she was diagnosed with a rare genetic disorder called Rett Syndrome. Her short life has brought many emotions, hurdles and struggles, but it has given us so much more.

I have taken a deep dive into my faith and relationship with God, and I believe we were given our Rett Angel to guide us to Christ to learn His way and to live life set forth for us. I feel strongly that it is my duty and responsibility to share our journey and Stetsyn’s story to not only raise awareness of this devastating illness, but also to share our life and journey of faith with others.

I hope you enjoy our blog, stay tuned for more!

  • Swallow Study

    Stetsyn had a swallow study (videofluroscopic swallow study- VFSS) on December 31st, 2024 at Riley and it went great! The reason for this study is because of Stetsyn’s frequent vomiting and gagging causing vomiting. This is a big concern for her since she is already small, and is continuing to struggle to gain weight since…

    CONTINUE READING: Swallow Study
  • Welcome!

    Hello, and welcome to Blessed With Chaos blog! I chose the name “Blessed With Chaos” because of how much the literal meaning resonates with me. With my daughter Stetsyn being diagnosed with Rett Syndrome, a rare genetic neurological disorder, we have experienced a LOT of chaos in our life lately. Though life has been stressful,…

    CONTINUE READING: Welcome!