My child’s doctor never tells me what’s next. I tell him. Or her. Or them. Or, if I’ve fired them from his case, the new set of “them.”
They don’t dictate what happens to him, because they didn’t carry him, love him before his first breath, spend hours in pain trying to birth him, or spend days, weeks and months in even more pain worrying about him.
The first month of trying to figure “everything” out, I nodded ferociously and said very little when the barrage of specialist came raining down on our sad little mint-colored NICU room. These are highly specialized, important, well-educated physicians, my head told me. They know what they’re doing.
It became disgustingly obvious that was not the case. And, the more I was repulsed by their lack of attentiveness and eagerness to help my son in a timely manner, the angrier and more frustrated I became. “First, do no harm,” includes being ignored while hospitalized.
I became demanding. And shrill. And unpleasant. And downright rude. I feel awful for the nurses who were stuck with me for the second consecutive month of my little boy’s hospitalization, because I think I spent all 30 days of it jumping from furious to inconsolable. There was no in between. Either I spoke to you like I wanted to damage your soul, or I was speaking with tears running down my cheeks.
The third month, the final month, was different. I had a game plan. And a purpose. And a backbone.
1) I fired doctor’s from his case. If you didn’t speak to me, or my son, in a caring, calm manner that led me to believe you cared about our emotional and mental well-being, or brushed off my concerns as some idiot parent with too much time to browse Dr. Google, you were gone. GONE. Next.
2) I had doctors explain their diagnoses to me, sometimes several times before I understood it. Then, I wanted to know why. What was their reasoning? Were there alternatives? Why this diagnosis over that one?
3) Then, I hopped on Dr. Google (bite me, jerk doctors), and researched my butt off. Every medication, every clinical trial, every medical forum… I read and read and read, which was easy to do spending 24 hours a day in a 12×12 foot room.
4) Then, I went searching for other parents. Facebook groups and pages, Yahoo! forums, baby website chat rooms; anywhere. Anywhere there were parents talking about their kids with the same diagnosis as mine. I needed to know how they were diagnosed with it, when they received the diagnosis, what the criteria was, what they were told could be done about it, and about 10 million other questions.
5) Then, I would speak to the doctor again. I would discuss what I had read, and talk about other parents’ stories. Talk about what those parents had said worked for their children and asked about it for my son.
You have to know everything about your own child, inside and out, and then educate yourself on the things the doctors tell you. Doctors aren’t gods, even though some of them think they are. Don’t get me wrong, we were fortunate to have a few really awesome doctors that wanted our input and questions, encouraged us to research things, and did some researching themselves. Those are the doctors that hug you after a positive outcome. Those are the doctors you never forget.
But, until you get one of those doctors, you have to be your child’s voice.
Listen to your gut, it’s never wrong.
Be the pain in their ass. It’s your child, you’re allowed to be a pain in the ass when advocating for them. I encourage it.
Never let someone tell you to stay off Dr. Google. Knowledge is your greatest source of power, and your voice is your second greatest.
Take back the control.