As a self-certified, part-time, mama blogger, I read all the stuff. I’m borderline obsessive with reading every single tiny thing out there that might have anything to do with children, or more specifically, rare genetic diseases. I may have even reached out to you (yes, you!) over the past year. And you probably ignored me. […]Read more "The One Sentence Parents Need to Stop Saying"
Over the past three years, most of the updates on Branko and the current status of his health were plagued with negativity. It’s not like we wanted to make everyone we spoke to feel like a pile of garbage. Things were just really bad for awhile. Fast forward to Spring 2015, a.k.a., the time when […]Read more "My son is getting better, but here’s why I’m terrified"
I was waiting for Branko’s name to be called for a routine X-ray on his legs. His grandfather took him in when his name was called, and a mother smiled and said Hi to him as he went by. She asked about his nasal prongs (Branko is on oxygen 24/7) and I gave her the […]Read more "Last Wednesday, aka, The day the grandma of a 9-year old non-verbal girl with a major chromosomal defect felt sorry for me…."