I’m exhausted and scared. There are days when I can’t believe everything we have been through, and every day it feels like it’s something new. On a day we celebrate really big milestones, we are also delivered devastating news. It is the pattern we live in with a child with chronic illness. For 3 years… Read More When you just want to be a MOM
If you pay attention to the disability and rare disease community, you will read that there is a fight about what we call our children with disabilities and diseases. Some mothers really do not want you to call their child an inspiration. They don’t want you to tell them they are amazing and strong for… Read More Why I'm Ok with you Calling my Child an Inspiration
Ask anyone that knows me personally, and most will tell you I’m a driven and motivated woman. I was the younger sister to a very accomplished brother. Not only did he excel at sports and academics, but he was well liked by everyone who knew him. As I child I spent most of my time… Read More When you Realize Childhood isn't a Sprint but a Marathon
I just had to share this picture! What a doll!
Dear Doctor, I am not sure if you remember me. I met you in the Pediatric Intensive Care Unit while my child was on life support. You weren’t my child’s primary care taker that week, you were just the doctor that happened to be on the floor the night we learned our diagnosis. I remember… Read More To The Doctor that said "Your Child will Never be Einstein"
Von’s language has completely taken off since September. Lately he’s been saying No for everything. He’s typically 3! Today he started saying a new word. This one is adorable. Enjoy!
The day he took his first steps I cried. It was tears of joy and wonder. It was the day I knew no matter how hard it would be for Von to accomplish something he’d meet the goal. I can’t wait for him to keep on reaching more milestones!
Today I have very big news to share. Over the past few years, I have worked in building advocacy and awareness for children with Adrenal Insufficiency. While Von has many diseases, this one is the closest to my heart. Adrenal Insufficiency is the disease that caused Von to nearly die 3 years ago.… Read More Adrenal Insufficiency United Collaboration!
Are you interested to hear my voice and listen to our story? I had an opportunity to meet with Purple Moxie. Each month they feature 1 woman that has turned a difficult situation into something positive. They did an amazing job! I’m so grateful to have such unique opportunities being Von’s mom. I’m grateful… Read More Watch my video
When I woke up this morning, I was reminded by a friend how much easier it was to have a sick child in the early months. Early on you don’t know the language, you don’t know the words, the equipment, the body systems, and you are essentially blissfully ignorant. I still remember being in the PICU… Read More When Treating a Disease Feels Like Gambling