This week, as I was relaying health information to a bunch of residents that were examining my daughter, they looked at me quizzically. I smiled really big and gave them my standard answer when people look at me tossing medical jargon around. “I play a doctor on TV,” I joked. Most of them didn’t get it, but the doctor in charge did.
“You are an expert. An expert on Rosie,” she said and she turned back to her team of residents to explain why I actually may be correct in my theory. The experience was validating.
Over the past couple of years, we’ve seen hundreds of doctors (that is not an exaggeration with ER visits and hospital stays built in). Some of the experiences have been incredibly positive but the majority of the interactions I’ve had with medical professionals have been what I like to call neutral. A neutral experience for me is an appointment with a practioner that not only has their own agenda, they also have preconceived notions about my child’s health concerns. They’re all business and don’t really have that touchy feel that you’d like to see when you trust your kid to a doctor. It’s a blah experience. You know they’re going through the motions and that you’re not going to get anywhere. I’ve spoken with lots of parents with chronically ill children and know that my neutral experience is the norm in medicine. It’s a shame.
A further shame is the negative experience. These are the experts that make you feel like a complete idiot when you open your mouth. The symptoms you discuss with them cannot possibly exist because they don’t fit the usual pattern of the disease or malady. They fit their patients into little boxes and treat according to a pre-set protocol. They diagnose quickly and stick a label on your kid because they have to be correct. This experience is a parent’s nightmare and it’s all too common. If you talk to a parent of a chronically ill child, we all have our nightmare doctor and we can all tell you the frustrating stories about trying to be heard to get answers for our kids. It’s awful.
I play a doctor on TV
I joke when I say this but when I look at our journey the past two years, I am the only one that’s been with her the entire way. I’m the one that’s seen the migraines first hand and know how they present now and what they looked like when she was little. I can tell by her mannerisms that she’s about to not feel well. I’ve held her hair as she’s vomited. Brought her medicine in the middle of the night. Been there when she’s passed out and all the times she’s turned white as a sheet because she couldn’t regulate her nervous system. I’ve nursed all her injuries, wiped all her tears and cheered her on to believe she can beat all of this. I am an expert on my daughter. Unfortunately, I’m often surrounded by people that think because they’ve read textbooks, taken exams and seen patients that they know my child better than me. They don’t.
It’s such a pleasure this week to have a doctor that actually wants to listen to what I have to say. In fact, she made it a point to come to Rosie’s room a couple of days ago to get updated because she hadn’t seen her since a December 2014 hospitalization. She wanted details and wanted to know what we thought. She expressed concern and cared. That’s rare in the world of physicians yet, it shouldn’t be. As mothers, we are experts on our children. Doctors need to respect that and listen to us.