“The life so short, the craft so long to learn.” ― Hippocrates
I have to say that this Sunday has gone much better than last Sunday. Last Sunday, we were taking Mia to the emergency room at Children’s because she couldn’t breathe without difficulty. It was a long week. From the ER we were transferred to the Pediatric Intensive Care Unit for two nights, and then we were transferred to a regular hospital room for two more nights. In those four nights, we saw no less than 30 medical professionals. It occurred to me as new people entered the room, suggested procedures, suggested problems Mia might be having, suctioned, nebulized, dosed with medications, that something had gotten out of hand. Somewhere around night three, I started to wonder if the doctors and nurses had even read her chart. Some of their statements were odd, some of them didn’t know she had a trisomy disorder, and some of them looked confused when I said ventricular septal defect.
It has left me with a chilling feeling. With Fynn, we hadn’t had many trips to the hospital. Aside from one broken leg, Fynn has been remarkably healthy. He even contracted RSV this week and he cleared up in two days. With Mia, this is going to be a life-long struggle. She’s healthy and has minor problems, but health issues will inevitably crop up. How do I remain clear-headed, informed, and strong in these healthcare situations? It’s not in my nature to question doctors. I don’t question authority. My natural inclination is to say yes and to please those in authority.
I guess the big question is how am I supposed to be her advocate? I don’t want to be THAT mother. I don’t want to alienate those caring for her. I’m struggling with how to navigate this world. How do I educate? How do I help her when the healthcare professionals that I need to rely on in an emergency don’t really understand Trisomy 21 or even know that there are AAP guidelines for care?
How am I supposed to be her advocate in a system that feels broken? How will I know what questions I need to ask? How am I supposed to help her when I barely understand all of this myself?
That feeling has cropped up again. I feel scared.