I am raising a medically complex child. As I’ve said before, it’s very overwhelming for me to see all of Grayson’s symptoms and issues listed in one place. Because he has so many of his body systems that are affected, he sees a lot of doctors. We have eight specialists, plus our pediatrician, that we see regularly.
I have a lot of respect for doctors. Grayson would be in a heap of trouble if not for the medical profession. We have a diagnosis and treatment plan because of aggressive doctors who dug for answers about my little boy. He takes medication and supplements that are keeping him stable and helping him to progress. He gets the nutrition he needs through a tube in his tummy and is now on the growth chart because of a doctor. I truly believe that all of Grayson’s doctors care deeply for their patients and want the very best for them.
But that doesn’t mean I always agree with them.
I am not a science person. I never liked science in school- I opted out of taking science my senior year in high school took geology in college because it was supposed to be the easiest one. I really wish I could go back to my 9th grade self and tell her to pay close attention in biology when they talked about the mitochondria. That one little label on a picture of a cell on that biology final now pretty much consumes my life.
I’m not a science person, but I now spend hours a week researching science-y stuff. I don’t particularly enjoy it, but it makes me feel more in control when I know something about what’s going on in my child’s body.
I don’t claim to be a doctor, or have even a fraction of the knowledge that Grayson’s specialists have. But guess what? I do have a lot of knowledge that I didn’t have a year ago. A lot. And I’ve met a lot of people who know a lot. So I don’t go into doctors appointments ignorant.
Today was challenging. Grayson saw a new doctor, who was very nice and respectful, but we don’t agree on one particular issue. I thought I did a pretty good job presenting my opinion and asking specific questions, but of course was intimidated talking to someone with a lot more credentials than me. But I do have one credential that she doesn’t have: I’m Grayson’s mom. It’s my job to make decisions for him, because he can’t make them for himself. I have to trust my instincts, keep him safe, and not worry about what anyone else thinks of me, even a doctor who probably thinks I’m nuts.
Doctors are amazing people, but they don’t know everything. And they don’t know my child like I do. It’s both incredibly terrifying and empowering that any decision regarding Grayson’s care ultimately is made by Ryan and me. And this is why this liberal-arts-brained-non-science girl will keep on researching, reading, and talking about science. Probably for the rest of my life. Oh, God certainly has a sense of humor.