Michael Jr. and I found these random painted rocks at Tyler Park. The one stats "I choose peace" and the other "I'm a survivor"
Big Piece of Humble Pie – eat it and learn
Blog Feed
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 [...]
An unexpected career change
This isn't the life I planned or even the life I necessarily wanted. Contrary to what people think, I had an amazing career before blogging. A career I loved. I never had the desire to be a full time stay at home mom or a blogger. Don't get me wrong I LOVE my kids and [...]
Changing the ignorant narrative
As a rare disease family it occurred to me quickly that the rest of the world is ignorant. Let me clarify that. You aren't necessarily a malicious person if you are ignorant. It just means that you may not be aware of how harmful some of your statements can be. Our family has experienced a [...]
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 [...]
Overheating to anger
A common thing that many BWS parents have noticed with their children is their inability to regulate their body temperature. Before my blog I had no idea this was a common theme that many BWS children struggled with. It wasn't until I started to connect with BWS families and ask them, that I realized many [...]
Overheating: A BWS Q & A
Meet the Delgado Family. I connected with Tim over instagram and reached out to him with several questions over the past year. Tim's son Dax has BWS and is 10 years old. Since Owen is only 2 I constantly have questions for the parents who have older BWS children. I have learned so much from [...]
Diggerland – From tractors to water slides
It has been more than a hot minute since I have blogged about a fun place to go! The last time I did was almost a year ago when I wrote about my yearly girls trip with my sisters and mom in Ocean City, NJ. I am challenging myself to get back into writing and share [...]
The signs that went unseen
Pregnancy comes with a lot of unknowns. No pregnancy is the same. I remember when I found out we were pregnant with Owen, so many people told me “it won’t be like your last one”. That statement could not be more accurate. Early on in my pregnancy with Owen, I had a gut feeling something [...]
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 [...]
You are a diamond
After sharing a lot about my husband on social media, I realized that most people don’t know our story. I could take up pages telling you every detail about him and I but I won’t bore you to death! What I really hope you take from our story is that you deserve to be happy. [...]