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
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. [...]
RARE. – 10 things you didn’t know
If you have followed me for a while now, you most likely know that in January K (Kristine), and I decided we were stronger together, and I became the COO of RARE. An apparel and accessories brand that dedicates its platform to raising awareness for rare diseases and invisible illnesses. K started RARE. as a [...]
The pieces that make you whole
In a world where hate seems to so easily seep out of peoples soul and out of their skin, it is hard to remember that you are enough. It can be hard to remember that the pieces that make you whole are important. The differences in each and everyone of us is what makes the [...]
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 [...]