Social Media: The good, the bad, & the ugly

Social Media: The good, the bad, & the ugly

Social media is a tricky thing to navigate for anyone. It's much trickier for people who have children that don't "fit the norm". The fact that I even have to write that bothers me, but it's true. I have been sharing my family and our story on social media for a year and a half [...]

Cancer – Care Before: A BWS Q & A with Amber

Cancer – Care Before: A BWS Q & A with Amber

Amber is the mother of Vivian. A 3 and a half-year-old little girl diagnosed with Upd Beckwith-Wiedemann Syndrome and most recently Stage 4 Wilm's Cancer. I connected with Amber on Instagram and have watched her family's journey with her daughter. Vivian had an ultrasound in December of 2019 and no cancer was seen. Fast forward [...]

Motivation & ignorance – a fuel to be reckoned with

Motivation & ignorance – a fuel to be reckoned with

Dedicated to those who stoke my fire - Thank you for continuing to remind me everyday why what I am doing is so important. Thank you for being my motivation-Mom of a mountain mover Something that I find incredibly difficult when it comes to Beckwith-Wiedemann Syndrome is figuring out other peoples reaction to Owen’s physical [...]

Leave your mark. What journey will you take?

Leave your mark. What journey will you take?

It wasn’t until Owen was recently hospitalized that I realized how much of an impact he has had on people. Most of those people he has never even met. Choosing to share our family's story has turned into so much more than I expected. Sometimes it's overwhelming. Sometimes it’s stressful and quite honestly sometimes I [...]

Autism – The Perfect Puzzle Piece

Autism – The Perfect Puzzle Piece

Autism Is not something Owen has, yet it is not foreign to my family. My husband works with autistic children and adults so it’s not something I am completely unfamiliar with. However, I didn’t gain a true appreciation for autism and the struggles that come with it until Owen was diagnosed with sensory defensive disorder. [...]

Decisions

Decisions

Have you ever had to try and make decisions based on something unknown? Sounds kind of impossible right? How could you possibly make an informed decision about something when you don’t have all the facts? You don’t have all the answers or information. Imagine how terrifying those decisions become when you're making them about your [...]