My son, B-man or Bucky, depending on his mood, had just awoken from a 6-hour surgery. The surgeon comes to give us an adrenaline-fueled recap. I will never tire of hearing this part: He’s going to be fine. Everything is going to be okay. That pervasive melty feeling in my legs starts to fade. The […]Read more "That time my son impressed a nurse by asking for a pillow"
The rap sheet for all the stuff that’s happened to my son’s body is beginning to sound fictitious: multiple fractured femurs, pneumonia, lung failure, rodding surgeries, and more. My husband and I have spent an extraordinary amount of time in the hospital with him. While most people would rather experience a rapid succession of mouthburn […]Read more "Top 5 Reasons Why I’m Super-Excited to Spend the Holidays in the Hospital"
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"
My almost 4-year old son, Branko, has a sometimes scary chronic illness, and has had hospital stays anywhere between two and twenty-four days. I had never even been inside a children’s hospital until he was first diagnosed. I had never known anyone who had a kid with a chronic illness. I was a new mom […]Read more "Hospital Stays and the Curse of the Chocolate Timbits"
There are days when the internet reminds me of a piece of mystery garbage, one that I can’t quite locate on my kitchen floor. The insidious smell is usually just the right amount of foul for me to establish that, yes it exists, and no, I won’t have the energy any time soon for a […]Read more "To the Mom in the Hospital Waiting Room, Part 2"
Dear Mom Waiting at the Orthopedics Clinic with her Kids, It was a hot day. And heat means it’s going to be a rough day for my son, Branko. Summertime breathing was a gruelling task due to all the fluid junk in his chest. I showed up in the waiting room, scanning the area for […]Read more "To the Mom in the Hospital Waiting Room"
Branko had his first surgery yesterday, or, as I’m sure all the more experienced Sick Kid-ders call it surg. It went off without a hitch. He is cranky, but at least he’s cranky + morphine. The irritating part was that the series of events leading up to this surgery never should have happened. I feel […]Read more "The First Surgery"