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"
Branko is currently sleeping in an ICU bed at the hospital. He has Influenza B, and pneumonia in his left lung. He has an IV in both arms, and tubes sticking out of his toe, chest, and nostrils. His breathing sounds treacherous; I will definitely need hypnosis to forget these sounds. My husband brought him […]Read more "A garbage-y day turned into an okay day"
When Branko was about 3 months old, we noticed a bony growth on his rib. We weren’t concerned at all, but our pedeatrician wanted to do a chest x-ray, just in case. I remember taking Branko to the x-ray department at Sick Kids, all by myself, and not! even! worrying! for one second. Nothing could […]Read more "First Hospital Visit; Our Health Care is the Shit"
Here it is. Branko’s left leg. And don’t even get me started on the right one. If you look very carefully, you might notice that his tibia (biggest bone) is not quite lined up with the ankle. In fact, the bottom of the tibia is nearly poking out of his skin. What we thought was […]Read more "The left leg; Some Uncertain Certainties"